What I Wish I Knew Before My Mother’s Alzheimer’s Death

By Jasja De Smedt Kotterman | March 16th, 2018

As with many Alzheimer’s patients, it was the family who suggested my mother get her memory tested. She was 68 years old, repeating herself, losing things and occasionally paranoid and combative with my father, something we had never seen from her before. We thought she might be depressed, but the notion that she might have dementia crossed our minds. She was diagnosed with mild cognitive impairment, the earliest stage of forgetfulness, in 2008, but was not officially given the diagnosis of Alzheimer’s until 2010, when she had an epileptic seizure. After that, her memory and cognitive faculties deteriorated sharply.

This is not the story of an Alzheimer’s patient swinging between the ignorance of their forgetfulness and the panic of watching their own ongoing decline come into focus, nor the story of the fear, the bouts of irritability, and the deep sorrow felt by family members watching their loved one slowly disappear before their eyes. We went through all that, yes. But this is the story of the last three excruciating months of my mother’s life. She died in her family’s arms at the age of 76, having battled Alzheimer’s bravely for more than eight years.

What does it mean for a person to die from Alzheimer’s? Alzheimer’s is a terminal illness. Like many family members of the newly diagnosed, I researched the various stages of Alzheimer’s, as well as the experience of patients and caregivers. I wanted to know what to expect. I knew that complications might occur—pneumonia, weakened immune system, blood clots—that might be attributed as the trigger of the end. What I couldn’t find is how someone dies from Alzheimer’s. What do those complications look like in an Alzheimer’s patient? What does it mean for the patient and their family? I never found an answer until I watched it for myself.

The author with her mother in 2016.

I realized my mother had reached end-stage Alzheimer’s in mid-March 2017 when I went to visit her. Just the month before, she was able to join us to celebrate my younger sister’s wedding in Amsterdam. But even then, it was clear that she had gotten worse rather quickly. We had moved her into a care home one and a half years before, and she had settled in as well as could be expected, progressing slowly down the curve of Alzheimer’s.

She had been in stage 6—characterized by confusion, personality changes, and the need for supervision—for a while, and we thought she would remain in this stage for another few years at least, as she was physically fit and engaging with others. But while she was still able to walk, we noticed that she was having difficulty figuring out how to walk up the stairs and getting in and out of the car was almost impossible for her. It looked like she couldn’t figure out what she had to do—which leg needed to go where.

She had picked up a very distracting tick—clapping with her hands to a rhythm only she knew in her head. At my sister’s wedding, my father and I had to hold her hands to stop her from clapping. If we held just one hand, she would start tapping the same rhythm on her leg with the other. This repetitive tick would become worse, where she would end up hitting her head quite hard with the repetitive clapping rhythm. We never could figure out why she would do it. “Part of the disease” was what we were told by doctors. It was part of the disease that meant she was no longer welcome in the main living room of her care home, because it annoyed the other patients, and she was relegated to spending hours alone in her own room. I walked in once to watch her sitting there alone in her chair, staring blankly out the window and hitting her cheek, her forehead, her hair, then her hands with this maddening clapping rhythm. And she was hitting herself hard—to the point that it must have hurt, but she didn’t seem to notice or mind. It was gut-wrenching to witness.

My mother was a gifted piano player. She was self-taught and could play any piece of music you put in front of her. This gift is what helped her through many long weeks, months and the final year of her disease. She could play for hours on end, and even when she had forgotten the faces and names of all her friends, long after the passing of time had become meaningless to her, she could still read the music and play. But in February that stopped. When the care home nurses led her to the piano, she stared at it blankly, put her hands on the keys, and stopped and then stared off into space, disinterested in the thing that had given her so much joy her whole life. The caregivers surmised that maybe she felt frustration or embarrassment that she couldn’t figure out how to play anymore.

“When the care home nurses led her to the piano, she stared at it blankly, put her hands on the keys, and stopped and then stared off into space, disinterested in the thing that had given her so much joy her whole life.”

They say the disease takes a big downward step and then stabilizes, but that those periods of stability get shorter and shorter. That was the case in February. When we would come visit, her face would light up – “Hi, Poepie,” she would say to me, even when she had lost all her other words. But one day in late February, my sister found her sitting alone in her room, staring vacantly and unresponsive. Nothing my sister did elicited a response. It was the first wakeup call of many for us. The next day, it was back to normal.  My mother was her old—albeit post-Alzheimer’s—self, smiling and responding with yes, no, nods and shakes of the head.

Read Next: The Alzheimer’s Advice I Would Give My Past Self

By the end of March, after a few more of these vacant staring episodes, she had lost the ability to walk—no amount of tugging or pulling could get her to stand up, and she was visibly afraid of taking steps. With the lack of mobility came the bed sores. In the case of my mother, they manifested as very large blisters on her heels—so large the blisters covered half her foot. Why was she getting blisters there? No one could answer—maybe she was rubbing her feet up and down the mattress at night because she was uncomfortable. She had lost the ability or the know-how of turning over. Even now, I still cringe to think of her rubbing her feet in her anguish, alone in the dark. I pleaded with the nurses to give her something to sleep better at night.

The blisters didn’t heal, and then an old bruise on her leg opened up and started bleeding and crusting over. It was due to poor blood circulation, made worse by the fact that she was having trouble eating and her protein intake was too low, exacerbating the fluid build-up in the blisters. And then she stopped being able to swallow her medicine; no antibiotics to help heal the wounds on her heels and legs, no paracetamol to ease the discomfort, not even a relaxant to help her sleep at night.

I didn’t know it then, but we finally encountered the real killer with Alzheimer’s—forgetting how to swallow.

In late March I found her still sitting at the dining table two hours after the meal, staring at her bowl of fruit. The nurses said she had become a slow eater. I realized at that point that the suddenness of my mother’s spiral had even surprised the staff. They didn’t realize the blisters were from bedsores, thinking her shoes were too tight; they didn’t help her to eat, thinking she was taking her time. It was the disease, slowly shriveling the part of her brain that takes care of the physical processes and basic functions.

It was the swallowing, or lack thereof, that was the beginning of the end. She would chew her food for hours, forgetting what to do with the food in her mouth. So, the nurses moved her to liquid shakes, or thickened her water to make it easier to swallow, and started giving her water and juice in sippy cups.  She hated those—even in her advanced state, she refused those pastel, toddler sippy cups. I could get her to take one or two sips of water from a normal glass, but her eyes would go dark when I tried with a sippy cup. I clung to that. She may have been in the grips of the last stages, but by gosh, she wasn’t going to lose what shred of dignity she still had by drinking from a plastic pink sippy cup!

One day she just stopped eating and drinking completely. Not only does Alzheimer’s make you forget how to swallow, but it also attacks the part of the brain that sends thirst and hunger pangs. And that’s when I understood what would kill her—she would slowly wither away, dry up, unable and unwilling to eat or drink.

By April, she was mostly bed-ridden, requiring a special sling-lift to lift her onto her wheelchair, to change her adult diapers, to wash and clean her, to change her clothes. She always tensed up when they started putting her in the sling-lift, obviously embarrassed in front of the caregivers. Why is Alzheimer’s so cruel to steal memories and awareness, but leave the emotions?

By then, I started to wonder how long this would go on.  She was awake, tapping away to that incessant rhythm in her head, sometimes responding, mostly staring away vacantly. How long could someone go without eating and drinking? She had lost a lot of weight, her cheekbones becoming more prominent. Looking into her eyes, I couldn’t find my mother anymore, just dark, grey-colored eyes.

We were there constantly the last week of April, coming every day, going home exhausted at night. I postponed my plans to go home; my sister took time off work. Nobody could tell us when, but said if she didn’t eat and drink, it would go quickly. How quickly? Weeks or days, they said.

Watch our talk “The Last Stage of Alzheimer’s: What You Need to Know” with Jasja Kotterman and Dr. Liz Sampson of University College London:

[embedyt] https://www.youtube.com/watch?v=yvfWGa0MDf8[/embedyt]

And then one day, the spell broke. She was hungry and thirsty, and drank and even ate and chewed, slowly, but with relish. And we gave her as much as we dared without causing her to choke. The doctor told us we would have many more months with her if she kept eating. It was a relief to hear this, and we had a few good days—so good that I planned to go back home, my sister made plans to head back to work, and my father planned to visit friends in France. We would keep in touch and be ready to come back as soon as things got worse again.

But worse came the following day. The doctor called saying my mother had developed a lung infection. She must have choked on something on one of the good days, some water, some food had entered her lungs and triggered a lung infection.

Read the rest of Jasja’s story on page 2 –>

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174 thoughts on “What I Wish I Knew Before My Mother’s Alzheimer’s Death

  1. Thank you for sharing this. Both of my parents had Alzheimer’s and my experience with their deaths was similar yet different. The sudden changes, the rapid decline and not knowing what was next was the most difficult part. You have painted a clear picture on what to expect in many ways.

    1. Thank you so very much. My question was exactly like yours—Yes, people die of Alzheimer’s but what is it that kills them. My mother went quickly. In reading of your mother’s ‘journey’ I realize my mother did the same except in months versus years.

      1. Thank you for posting your thoughts. I’m struggling watching my mother’s rapid decline in the last 4 months. She’s now losing the ability to swallow, has lost a significant amount of weight, and not able to communicate. My heart breaks every day as I watch her look expressionless, unresponsive, and vacant.

        1. Hello. I just read your post. My mom died of Alzheimer’s about 6 years ago. She, like your mom, had some swallowing difficulties, and, like you, I was so sad to see her decline. She was once vibrant, active and intelligent, and Alzheimer’s changed that, bit by bit. I tried to find some humor in the situation though, when I could. I even wrote a book about it called, “My Mother Has Alzheimer’s and My Dog has Tapeworms: A Caregiver’s Tale.” They each were diagnosed with their respective diseases around the same time; hence, the title. My mom would sometimes unwittingly say funny things, like when she wanted to tell someone that she pounded the pavement, looking for a job in NY after college, (an accounting job), she said, “I walked the streets of NY, if you know what I mean.” My mom might have been a sweet talker, but she wasn’t a street walker. When I’d get overwhelmed with her decline, I’d try to remember something funny, and that helped. Best of luck.

          1. Thank you for your post… for letting me know what might to expect. May god gives everyone Who is going through tough time the strength to carry on and sending blessing and love to you and your family.

        2. I’m sorry for what your going through as I went through exactly same thing in last 4 months with Alzheimer’s but she started off with dementia five years ago. In the end her brain destroyed after one day in bed at 10:30pm her breathing changed to longer slower breaths and very fast heartbeat until 1:47 am. Worst time of my life seeing her gasp the last ten breaths. It’s only been three days and I feel like I’m mourning myself too death. I am a Christian and I know all the good things but I miss my mom. We were extremely close and my life will never be the same. God bless you.

          1. Sherri,

            I am so sorry for your pain. My Mom has had Alzheimers longer than 10 years. Also, I am a Christuan, but feel such pain.

            Keep clinging to God each day. He alone csn heal our hearts. May you heal soon and know that you will spend eternity with your Mom.

            Bless you!

          2. Sherri, I just had a similar experience as yours. My stepmother was diagnosed with ALZ in Jan 2021. After scans it became vascular dementia. In March she could walk with a cane . In April a walker. In may , she could no longer support her weight. 2 weeks later hospice was admitting, she seemed to have strokes during the process of recliner to bed transfer and catheter induction. Her breathing never settled. She was upset she couldn’t breathe. She started Cheyenne-stokes and as my dad and I held each hand there were no more breaths. Such a hard way to pass.

        3. my mom is still trying to drink her water and does so successfully( and responds to me) only when the other siblings are not around. I think they want her to pass sooner than she should. she swallows her water easily, responds to me with a thank you for the water. BUT they refuse refuse to listen to my positive feedback on her behalf. I feel hopeless, she’s in hospice( BELVEDERE in CHESTER,PA.) can anyone help

          1. You are helping yourself. You are being strong for both of you. I’m 83 and have seen a lot and know a lot about these situations. Lean on God or whoever is the Light in Your Life. Actually you are also leaning on yourself. That’s good. We need to be strong and that’s what you are doing. Sadly, however, we seldom realize how strong we are. That’s why I’m telling you. I recognize your strength. You are going to be all right.

        4. I only found out my mother was diagnosed with alzheimers disease about 1 hour ago. Although – we knew something was wrong for the last year. This is the first article that I have read in order to educate mydelf. I was profoundly moved and did not understand what the future may hold for us. Thank you.

          1. I just had the same experience. We already lost Dad to cancer so we know hospice, but this is frightening all over again. Thank you all for sharing and that you to the author for this article.

          2. Thankyou so much for for sharing your mother with us. My mother is also suffering from Alzheimer’s disease and im so heart broken warching a clever loving and beautiful lady, fade away a bit by bit on front of me. Your story has helped me see its about family staying strong together, communucation love and dignity. Thankyou xx

      2. This was so enlightening to me. I witnessed a seizure with my mother as well. Her decline was steady after that. I thought it was a stroke but epileptic seizure is more accurate.

        1. I truly appreciate this article. My Mother called tonight from her room at the Nursing home, so confused, wanting to know again where Dad was, had she just gone and left him? Where is her house? All these things over and over. My Mother also had 2 unexplained seizures at the onset of this disease. The drs called them TIA’s but for 8 years they haven’t returned. My father suffered and died from PD with dementia. 7 years . For me now it is 16 years of watching and grieving my parents as they suffer with these heartbreaking diseases. Tears me apart.

      3. Hello. Just read your mother’s journey with Alzheimer’s. My Uncle has it now and has had it about 6 years. Thank you so much. Now finally I know what to expect. Like you, I could not find that information. Just the same my heart is breaking.

    2. I am so sorry to hear about your Mum and the pain you must feel. Your article has really helped me understand some things about my Mum who had two major strokes and severe dementia. She was given no more than 3 months to live and is still going 3.5 years later. Her quality of life is terrible, she has double incontenence, virtually no recognition of family, eats only soft food and chews a lot and is nearly blind and immobile. I don’t know how much worse it can get. She is in a good nursing home, but I find it hard to cope every time after I see her. Its hard to know what she does or does not feel. She lost most of her speech function as a result of the strokes. What a nightmare this disease is. So much is unknown, I wish I could help her.

    3. Coming from a family who has lost 1/2 of its women, to Alz and the other half to cancer. Two diseases we have known about for more than a century, I only wish I could have finished your story, because my Mom, and her Mom before her battled; my Mom for 17 yrs my grandmom for 10. I still cry daily after a yr loosing her about the suffering she endured. This is a Brain disease, that has no meds, no survivors, no treatment, and no hope. 1-2 Baby Boomers which I am one, will die of dementia. Perhaps by the time the 1964 babies enter their 80’s we might get serious about this disease, but if we haven’t since 1906 when a dead German, named Mr. Alzheimer. founded it, I doubt we’ll get serious in the nxt 30 yrs…..

      1. I find it so very upsetting that this disease robs a person of everything, dignity, feelings, speech, swallowing and the list goes on and on. My mum has Alzheimer’s she moved to a care home due to falling and being on the floor all night. She has gone down hill rapidly. We are at the stage of she doesn’t eat more than a teaspoon of food, she chews and chews her food and ends up spitting it out. She has lost two stone. Very rare has lucid moments, they get her up but she just slumps in her chair and sleeps most of the time. We can’t have a conversation with her any more. She is in terrible pain in her leg and when they hoist her up she cries out as it hurts her. She has had numerous urine infections and been hospitalised, she has been unresponsive twice and the doctor said it was something in her neck and she has nearly died twice due to lack of fluids. I don’t know how long my mum can last like this, but it hurts to see her going through this. the worst part is nobody from the professional world has ever discussed it with us, so all we know is reading up on it and other peoples stories.

    4. Me and my extremely devoted/caring & insightful brother, both retired RNs, provide full-time care for our 102 yo mother with a 10 yr history of Alzheimer’s/dementia in her tiny 900 sq’ house. We knew we were physically and emotionally able to do this in the beginning, but I must admit I am envious of all who are able to simply go and sit with or visit their loved ones; able to pat their hand lovingly, lament their loss, but go home to a life and recoup before next visit. My patience is waning and my 60+ yrs of unquestionable faith and trust in a merciful, loving God have become virtually non-existent. What parent could/would ever knowingly allow a serpent to enter their childs room and cause harm or death to their beloved child?

      1. Your story saddens me, I, too am an RN, taking care of my husband,
        Alz./vascular dementia 24/7 for past 10 years. I never doubted my abilities but it is a LOT ! He is now bedbound, stopped eating but still drinking a little, losing his speech. Was a brilliant Astro-physicist, taught university for 45 years. I am so incredibly sad, must carry on to help him to the end of his journey. Don’t know if I have the strength.

    5. We chose to care for Mom at home in part to honor her wishes, very limited financial resources, and most importantly, having witnessed first-hand the kind of care, or lack of it thereof, provided in even the best of Alzheimer Unit/ Nursing homes where human resources are limited, patients have to fit into the facility’s regimented schedules, and sedation becomes the preferred conduit to conformity. We have Hospice support and therefore access to MD input and drugs as needed for UTI’s, contipation, anxiety, etc. and medical equipment and supplies. We are fully aware that death will come, not directly from the Alzheimer’s but through indirect complications that become increasingly trickier to treat with advancing age, i.e. aspiration pneumonia, sepsis from other infections, falls requiring surgery, meds, and further loss of mobility/ blood clots

    6. My 102 yo mother with 10 yr hx of Alzheimers been through most all of the stages mentioned in prior posts (lost in time, purpose, and function). She recognizes me and my brother by voice, is sometimes able to talk and continues to eat and drink a healthy diet of about 900-1000/calories/day by herself every couple of hrs in the kitchen. She has moderate-severe macular degeneration and is virtually deaf even with hearing aids further adding to what I can only imagine is like existing in some dark void; she can hear only by talking directly into her R ear. The last 2 yrs have presented further challenges with being confined to a wheelchair, OCD types of behavior, paranoia, and occas. hallucinations. She gets up every 30-90 min Night and day and is not strong/stable enough to do this by herself requiring that we be nearby to prevent falls. We have tried to use the Ativan or Valium sparingly (3-4x/ wk) to avoid the hangovers, further inability to move, constipation, etc.

    7. When I see/hear the anguish in my mother’s eyes and voice, the pained efforts to move, her weak smiles, and do-or-die kind of determination to keep going, I pray for her to die peacefully in her sleep to end the torture. My only consolation is that she will die with the people that love her most at her side. It’s a fact that one of us will have to die for this situation to change; the question is which one of us will it be?

    8. My mom REBECA has had it since 2016 and I remember our last conversation was me telling her mom go to the doctor to be checked for it. And she told me I’m ok. And 2 or 3 days later she dials my number asking me why her husband has my number and then hangsup sad indeed.heartbreaking for sure. I lost my confidant my only friend… And I’m so scare of my future.

    9. All comments are relevant to our experience of Dad whom passed on on 21 July. He was tested and not Covid-19 positive. What broke the rest of us (Sisters and Mother) is the fact that we could never see our Father or touch him from 26 March when South Africa went in lock down. We are at loss and full of self blaming and we had no control.

      1. I feel you.
        Many of us can’t even see or touch or accompany our love ones till the end due to Covid19.
        May God heal our hearts without regrets and bring comfort to our love ones.

  2. I am an Alzheimer’s sufferer. After attempting to get through this article, I had to stop due to floods of tears interrupting me. There should be a long space or a long silence here. Let’s pray for all of us who have to suffer getting through this.

    1. I thought this was truly a sensitive,but yet awareness and a abundance of the know and very factual story. I am a caregiver to many Alzheimer’s disease patients. My father had it and crossed over peacefully. I thank God for that. Thats why I do what I feel is my passion. Elderly home care. Its very rewarding to me to know what I know now and to prepare or help with family members. Thank you for sharing. It was very detailed as well loving….. May your mother RIP..🙏

      1. Watching my mother suffer from AD the past 15 years is a myriad of contradictory emotions. Just as this story and all of the comments are soothing and comforting, yet terrifying at the same time. You are all so brave for sharing. My mom was diagnosed early in her disease… she was completely aware of her memory decline.
        After hearing the Alzheimer’s diagnosis out loud, she tried to commit suicide and the first year was a nightmare for my father, me and my sister as she struggled with severe depression. Eventually, time passed and she “forgot” to remember that she had Dymentia. My parents, my sister and I are within blocks of eachother, thankfully, and can support one another greatly. My father is sharp as ever mentally and took primary care of my mom in their home for 13 years. Two years ago, he accepted that he needed help…he was lifting her, changing her many times a day, bathing her ,etc. He ended up needing back surgery. They are together in a senior living environment. He lives in unassisted and my mom in the Alzheimer’s section of the property. It is costing him his entire life savings to do this . Frankly, I dont know what’s worse. Watching my beautiful mother fade away piece by piece, or watching my Dad losing his love of 60 years. Even though he pays for this lifestyle, he continues to advocate for her and do literally everything for her by himself. He does not feel anyone can take care of her properly. Even though we are all nearby and see them often, my dad feels complete guilt doing anything away from or without her. He is lonely and depressed and does not participate in any activities, groups, classes that are offered to him.My sister and I attended a wonderful support group for 3 months but my dad would not go ….he said it was nothing but bad news with no solutions. This disease is slowly breaking down our entire family. My sister and I discuss our parents situation relentlessly and try to be “prepared” for what is coming. But I know we are not. We visit them often and my dad still brings my mom over for dinners but it is getting very, very difficult. Some days my mother is very unpleasant and I feel such guilt that I dont want to be around her. We have asked these questions so many times about what to expect at the end, what exactly will happen, how long will it take, etc. The answers are horrifying. Aside from AD, my mom is technically very healthy overall. Some days she is angry and combative and doesnt talk or interact at all. Other days, she laughs, reads words and runs around hugging everyone and saying she loves them. The fluctuations are radical and confusing to us all. How long can this go on? It is like a never ending roller coaster.
        My heart and prayers go out to everyone on this blog…everyone that has faced this disease with a loved one. I get comfort and solace in reading and learning from those who have experienced this and are willing to share their hearts and their journeys with others. You give me hope that even during the most difficult times, there is love and joy yet to come with my mom. Today is Mothers Day. My mom’s brain doesnt remember that I am her daughter, but she is the reason for everything that I am! Thank you all for your stories and support!

        1. Thank you for writing. My Mother died today. She had been on a long slow decline since breaking her hip in 2012, and my brother and I have been taking care of her in her home. I worked out of state for six years to qualify for a pension I knew I and my brother would need, she cried hearing my decision and I came back every weekend, doctor or nurse visit, and when I retired moved home again. I feel so much guilt and shame and I imagine that not being able to take care of parents at home causes the same feelings in others, athough we do what we have to do. I was able to have the conversations I would regret not having nonetheless. Your Mother has a lot to be proud of in you.

          1. I’m currently hearing my sisters decline into this disease. Yes, hearing. I get information and give input through her daughters. Her husband despises mine for petty reasons ( and mine reciprocates) and refuses me any contact with her. We moved closer to our home state in part to be nearer to her. He says we shouldn’t have moved. He is still mostly in denial, yet refuses my help. As her only surviving immediate family member I’m uniquely qualified to connect with her in her childhood memories. Right now that’s a safe place for her. So I say that I’ve lost her, am currently losing her and will lose her again when she is finally able to rest.
            So I say to all on this trip, put aside your differences and live for what you have now. We don’t get to do this over. Do what you can, when you can and lose the guilt. That’s how I get by. Yes I’m still frustrated, but it will be what it will be.

    2. Frank, I too am an Alzheimer’s sufferer. What bothers me the most is watching myself decline. I know there will come a time I won’t know what is happening to me. Mean while it feels like watching a movie of myself. How do you feel?

      Ilene Crawford

      1. My husband was diagnosed with Alzheimer’s last May..and in just a year he has detiereated ,reading your stories have really given me insight of what to expect in the years to come and as I write down these words the tears are coming down my cheaks…I hate to think too far ahead as I have always been a live for today sort of person but I realise I have to prepare myself for what is to come…and I hate it,and don’t want it, but what can I do..I will be brave and do what it takes to care for my lovely husband ,we have been married for 53 years and I love him dearly…..

    3. Sending you strength and love. My mom found cannabis oil very helpful as well as coconut milk based protein shakes.
      Coconut oil converts to ketones in your liver to feed the brain, so it shrinks less, and slower. Cannabis oil helps with anxiety, sleep, mood and attitude. Take good care, Frank.

      1. Thank you so much for this wonderful article!
        I have MCI and I take CBD oil twice a day, every day, and being in my 2nd year (or thereabouts) 😉, I do believe it has been a great help in holding back the inevitable. I have also Accepted that Inevitability, and am at peace. Thanks be to God. 🙏💜🍁

    4. This was an amazing article, albeit heart wrenching. Frank, I can’t pretend to know what you were going through. I was diagnosed with pancreatic cancer 4 years ago. I had the most complicated surgery there is, even more so than a heart transplant. Whipple surgery…10 hrs. and 6 wks in the hospital. This was followed with chemo and chemoradiation, I had a 23% chance to survive 2-3 years. I can’t say life is rosey. My digestive tract is a mess And basically keeps me housebound. I’ve actually had a bit of a scare recently and talked to both of my children and my sister about my plans to take control of my final journey and do it my way.


    5. Hi= I have had an adult life of depression with medication which I understand now can bring on dementia. I also married a second time to someone who is non sexual, emotionally vacant and distant. I had hoped that with our separation would come a chance to meet and enjoy a less lonely life with someone more like myself. Then the diagnosis. I am in tearful as I write this knowing that I can continue to go to the gym, take my ginko biloba and yet the end will come…..no matter what.

      1. -I would have so loved to have understood many parts of this, prior to loosing both my parents within 18 months. As an adopted child even at 60, it was the most horrendous experience and I wish it on nobody. i can relate to the major part for Mummy, we knew Daddy was ill as his father had suffered with what was then senility … but Mummy … NO, we didn.t even see it coming she was so devoted to taking care of her huband, her health worries were put aside, then a fatal fall and the Doctors’ diagnosis …. 5 years later I.m having great trouble in coming to terms with what happened … Somewhere I lost the thread …. living abroad, perhaps? … but definitely not knowing what would be the final outcome it still is the most horrendous shock I.ve lived. I would wish it on nobody. Definitely very important if you have a close family member sufferint this illness essential to document ourselves. Courage to all. Line

    6. Mr Ettenberg. I just read your response, and I agree with what you shared 100 percent. I am sitting at my desk at work, in an office that I share with another. I struggled to maintain my composure during my reading, which I did, but it still crushed me inside. You see, I, like many experienced this first hand with a loved one. Very similar set of circumstances for me. …Now, I find myself going thru diagnostic procedures for early onset dementia and Alzheimer’s. I do not know the conclusive findings yet. All I can do is pray that they are negative for the sake of my family.

    7. Jasja, I thank you so very much. My question was exactly like yours—Yes, people die of Alzheimer’s but what is it that kills them. My mother went quickly. In reading of your mother’s ‘journey’ I realize my mother did the same except in months (about three), versus years as in your mom’s case. God bless you Jasja, and your family as well.

  3. Yes, thank you for sharing your personal journey! My Mom has Alzheimer’s and her rapid decline has everyone a bit shocked. I believe that the uncertainty of progression makes it so difficult for the family/care givers. It has variations of progression for each individual. May your Mom Rest In Peace and May we be so fortunate as to be with our Mom at the end of her journey.

  4. My dad died of complications due to Parkinsons. The complications were respiratory failure due to the fact that he lost the ability to swallow. Although he was on a thickened liquid diet towards the end, the fluids still found their way down the wrong pipe and wound up in his lungs. Aspirated pneumonia sent him to the hospital a few times. His lungs finally gave out one night and he drew his last breath. He never wanted extreme measures like a feeding tube and he didn’t want to be intubated. He wanted nature to take its course. It did. No more suffering. TY for your story.

    1. Thank you for what you have written Very helpful. My husband has had several bouts of aspirated pneumonia and has his drinks thickened and food pureed. He has mixed dementia Vascular and Alzheimers. Some good days some not such good days. May your father Rest in Peace and may you and your family be comforted.

      1. My mum stop eating and drinking for 10 days after developing a fever and lung infection probably from choking.
        She battled this disease for the past 15 years.
        She got this disease at a rare age of 50 only. Only 1% of the world get below 60.
        Due to Covid19, we are not allow to visit her. We can only wait till the final moments and hospital will give the green light.
        Today video call I could see her moaning in pain. I not sure what to do now.
        This is really saddening as I am in another country now and might not be able to accompany her on final journey.
        When I reach, I need to stay home for 14 days which might be too late.
        I m at a lost and can only pray to God that Covid19 be gone soon.

    2. Sue thanks for sharing. I am care giver for my dad. He is in end stage Alzheimer’s. Was in the hospital 2 weeks ago because of aspirating and pneumonia. I just fed him I think it’s back! He has a slight fever and coughing, breathing hard! I’m so scared. I leave the room and cry! His birthday is Wednesday the 24th of April! He is my hero, don’t know what to do?? Nurse comes in the morning. He has been my life 24/7 for 1 1/2 yrs. I put him in a nursing home for 10 days and said no way he’s coming home!! Thanks for listening!

  5. Thank you for sharing your knowledge & experiences. My brother is 92 and diagnosed with alzheimer’s about 18 months ago. As he was living alone it was necessary for me to place him in a care home in January as my family were unable to provide him with care 24/7 as his condition deteriorated. I have spent lots of hours thinking about what will happen to him but reading your story has helped me to understand the progression of this awful disease. Thank you x

  6. Thank you for your story. I am a Certified Nursing Assistant at a nursing home here in Pico Rivera, CA. Never have I read such a detailed account of what happens to a person with Alzheimer’s. It has given me much insight. May your mom rest in peace. She was a beautiful soul. And lucky to have such a warm loving family by her side through the whole process.

  7. Thank you for sharing. I cant stop crying after reading your story. As a granddaughter of Alzhemier sufferer, I treasured every moment when i m with her before my lost. the part of not knowing when exactly you gonna lose your loved one is extremely scary. I clearly remember every single moment that I visited her. She cant remember me, just smile to me as im a stranger yet its killing me to respond to her as im not hurt. I say that I love her at all the time, n cry silently whenever i have to leave. I study oversea n that’s a hard choice as i only got to see her yearly. Yet, I still can say goodbye to her when she passed away. I believe that god takes every happy angel to the heaven n she will be one of the angel. It is still hurting whenever I think of her that is why i do research project on dietetics about dementia in my degree of dietetics. I just wanna give hopes to other patients n their families as I know how bad it can be to feel hopeless and helpless. I hope next time when i think of her it will hurt less and less and till one day it will be bearable. Wish

  8. Thank you for sharing this. My mother’s trajectory with the disease was very similar and her death was virtually the same. It’s been 8 years since her passing and I have believed that I played a part in her decline and suffering. I felt that I was not patient enough, that had I kept her at home longer that she would not have suffered and died as she did. Reading that your story was so much the same made me think that perhaps that wasn’t the case. I was alone with an 8 year old child and working full time. It was hard. I was there, holding her hand watching her breathe her last breath and watching her heart struggle to keep beating and eventually stopping altogether.

    1. Please do not blame yourself. This disease advances at its own pace and you did your best. Probably beyond your best, with all your obligations. Take care of yourself and your family without guilt.

    2. Lisa, I cannot imagine how you cared for your mother, worked and attended to a young child alone. You truly did your best. My dad (86) and I cared for my mom at home with the help of a part-time caregiver the last 7 months. My mom left us from home, much as Ms. Kotterman described, minus the infection and with a much quicker timeline at the very end. Ironically, I had opened this article and did not read it until after my mother’s passing. If I had read it, perhaps we would have been a little less clumsy in recognizing that the end had come–certainly no one told us exactly what organ failure looks like–but my father and I and one grandson were with her when she left us just over 2 weeks ago. Home or care home, the end comes, as it will. I hope you will experience peace as your mother surely felt your love and devotion as you cared for her.

  9. This is a horrid condition I have cried bucket loads of tears and my wife who is 75 this year was only diagnosed January 2017. Sometimes I don’t know what to do but at least we have a very close family and they are always there if I need to unload my problems or just an adult to talk to.

  10. I just read this and cried. My mom died February 8th this year, it hasn’t been 2 months yet. As I was reading this it was like I was walking in your shoes my moms last days were the same yet different, if that makes any sense. Some of the same issues and behaviors , some were worse. I am a registered nurse and nothing I have experienced would have prepared me for this journey

  11. My father stopped eating and drinking 5 days ago. We are living your story right now. He has dementia, no doctor has ever told us he has Alzheimer’s, but ultimately I guess their lives are taken In similar ways. This is so hard…thankful for my sisters and my mother and my sweet dad who has always been there for me.

    1. Dementia is an umbrella word , there are various diseases under this umbrella i.e Alzheimer’s, Kreuzfeld Jacob , vascular dementia, Parkinson’s can include dementia, and the list goes on. Death, even if expected, is always full of pain, for those of us who are left to grieve. Thank you for such a detailed, sensitiv and loving sharing of your mom‘s death. I wish you all peace in your heart.

  12. I can so much relate to your case, since we´re living those exact months with my mom. Such a cruel disease, we loose them twice. Thanks for sharing.

  13. Thank you for sharing. In 1992 my Dad died at home much the same way. I relate well to what you have detailed out. After all this time I still remember the entire experience and how it impacted our family for years before and after. People would ask why I didn’t cry when he passed. As you state I cried tears during the years he diminished and faded away that losing him was a relief knowing he was no longer stuck inside his shell of a body. You must experience this disease to truly understand the devastation to the body and brain.

  14. I lost my husband to a form of Dementia. I also had friends question how you die from that. It is same as Alzheimer’s, brain response to parts of the body just quit functioning. He became bed ridden and couldn’t speak but his eyes said enough. He always knew us. Being an Eagle Scout, when grandson told him about his week at Boy Scout camp he raised a fist to say “Wonderful” and we knew. I held him in his last breath, son holding his hand. I’ll cherish that moment forever.

    1. Going through this now with my mom. Your story rang many bells. Doctors have not called it Alzheimer’s, but it is certainly a form of dementia. Right now I can get her engaged by asking her to tell me stories of when she was young, playing music that she loved, and showing her pictures of her grandchildren and great grandchildren. But she’s not eating and has a feeding tube…that she hates! Yesterday she brought me to tears with just one question. She asked me if she was a good mom. I am the oldest of 6, my ‘father ‘ left when I was 12. This little (4’9”) woman raised 3 girls and 3 boys on her own. She has always been my role model and hero. All 6 of us became productive people that have our own children that are doing amazing! When she asked me that I wanted to crumple and cry buckets! But what I said to her was not only was she a good mom, but she taught me what it means to be a parent. And I thanked her.
      I see the progression this disease is having on her. And it breaks my heart. To see this amazingly strong woman becoming all most child like, it’s not the natural progression you expect.
      I thank you so much for your writing about your mother. I now know what to look for, but I think there’s a part of me that already knew.
      My prayers are with you and your family.

  15. Thank you so much Jasja for telling us about your mother. God bless you & your family & may your mother Rest In Peace. I’m sure this is not how you feel, but your mother was lucky for passing away when she did. My mum is 92 years old & was diagnosed when she was 70 years old. She no longer speaks or walks she had no idea who I was. She had the same blisters on her feet but she is still alive. I do not understand why God lets her to continue suffering.

    1. Irene,
      My sweet mother passed away on June 11 of this year. You are not alone in your pain. Prayers to you and your mother.

    2. Hello Irene, my mother almost 96 was diagnosed with alzheimers bck in 2012 (7 years ago). We knew there was something wrong two years earlier. Mum is now not swallowing or eating that pureed stuff they call food, staring into space, not walking and need help with everything. All this took a sudden downward drop just 2 weeks ago after she had several falls and was admitted into hospital. As a Christian I truly believe that God ALLOWS suffering (not causes it).. and that we and those who suffer can UNITE our pain and suffering with that of Jesus who died on the Cross for us, so WE might live… not here but in HIS Heavenly Kingdom for all Eternity. I believe our suffering here on earth is nothing compared with the Glory and Love and Light we shall all share with HIM. There-for we can offer OUR own suffering (and that of our loved ones) with HIS suffering.. for the sake of others, for the world, for peace and love and forgiveness so THEY too may LIVE and be with HIM for ever. I will pray for you. Not sure when my mum will go.. all in God’s merciful Hands.

  16. This is so well done. It is so hard to watch this disease rob a person of everything both physically and emotionally. I cried as I read this article. Thanks for sharing.

  17. Thank you for sharing. My husband went in an almost identical pattern. He has a UTI which required hospitalization. During the course of antibiotics he lost his appetite and never regained it. I began to notice he would get strangled when given liquids, so thickening was added. Ice cream was the only thing we could get him to accept. Hospice was called in and he was moved to a nursing home. I spent all my time with him for the last five days of his life, only going home to sleep and returning to my watch. He was not aware I was there as best as I could tell, but the nurses assured me he could hear me. I used that time to let him know how much he was loved. My pastor came to visit on his last day and told me to give my husband permission to leave, and to assure him I would be all right. I did that at about 7:00 P.M., About 11:00 he took his last breath..all very peacefully. I had been singing hymns to him in his last hour. His nurse said ‘what a wonderful way to go, your sweetheart continuing his side and the angels singing to him on the other’.

  18. Thank you so much for sharing your experience with your mother’s decline and death. My mother has Alzheimer’s and continues her decline. This helps me to know what to expect and to prepare the best I can. I ams so glad your whole family could be there for your mom.

  19. Thank you for sharing this journey with your family. We have two loved ones with the disease, my MIL and my Aunt. Your story and the video with Deborah are very educational and eye opening. Thanks again and truly sorry for your loss… 🙏🙏🙏

  20. Thank you for sharing this very, very intimate story. We have been walking the dementia path with my mother since 2009. We do everything we can to connect with her and make her feel loved. I now have another sister, “Baby” who she holds all the time and sings to and coos to. Being a mother is at my mother’s core. Baby calmed her agitation and gives her a purpose. What we did not expect was Baby’s effect on us–Baby is a daily reminder of how much my mother loves her children, even when she cannot recognize them. My mother is constantly confused and sometimes nonresponsive, but she still can feel and give Love.

  21. Thank you for sharing your story. I know that it will educate and offer peace to so many others that have the opportunity to read it. As a Retired Nurse and privately caring for a Gentleman recently diagnosed with Dementia /Alzheimer’s I will encourage her to read your story as well. I’m a firm believer that although they may not recognize and often not be able to communicate their spirit is very much aware that the family and loved ones are near. I used to encourage families to bring in photo albums of pictures when their Children , Brothers & Sisters etc… were young and they would often remember the good times and share stories that may or may not have been shared in the past. We should encourage family and friends to visit while the times are good. As for me I’m openly selfish and let people know that as the end appears to be nearing that I want only close family and friends to be at the bedside. The end is not a time for people to stop by for s visit if they have not been to visit when he/ she was able to enjoy their visit. At that time it’s more for themselves and not for the person that is dying. I don’t mean to end this on a negative note I just want others to know it is ok to feel the same way in regarda to the end.
    On a positive note we were Blessed to be at our Mothers side when she passed after a long illness. She was always very conciouncious of our lives, schedules and family time. It seemed as if she waited for my younger Sister to get her Husband off to work and waited for her to Aricept to say her goodbyes before she left us that morning. Some find it hard to understand that we all felt that it was a beautiful passing but it was. She was surrounded by our Dad married for 52 years to the love of his life and 3 of her Daughters that lived in town. As she left this world we told her to take our love with her and to share it with Grandma, Grandpa and cherished other loved ones. She took her last breath so peacefully and we all knew that she would no longer suffer from Pulmonary Fibrosis and that her next breath would be in Heaven surrounded by her parents her daughter that she lost at the age of 2 and many other loved ones she longed to see again. I’ve no doubt there was a joyful reunion on that very day . Knowing that we all had much peace in the days that followed. Many Prayers to all that are going through or have gone through the loss of their loved ones.
    God Bless, Lorri

    1. You are so right Lorri, its sad I noticed people did not go to see my mum as often in the Nursing Home because of the Alzheimers/Dementia. But you know what as long as I know I have done everything I am capable of for my mum. Everyone understands a bit more when they lose there family.

      1. We have been dealing with mt Mom with this horrible disease for over 8 years now and it seems that my mothers siblings that are younger than her only come to see her once a year if that. I guess they afraid they will catch it or something. I always thought that this is what family was for but was very wrong. Now that Mom is getting to the point of many hospital stays and the constant worry that food will get caught in her lungs and aspiration and she has lost over 20 lbs over the last several weeks that now they will decide to see her to make themselves feel better. I am sorry but that is unacceptable to me. They should have been there all along the last 8 years but they weren’t. We had to make a lot of very difficult decisions and never even worried if they knew what was going on because they never even called to see how she was doing either. What a disgrace. I believe family is family and I know in my heart I would be there for my family if this ever happened to them but people are very self centered and afraid. I believe they are the ones that have to live with themselves over this not me or my siblings.

  22. Thank you for sharing your story. Right now, my mom is in her final days, hours, whatever the case may be. It’s such a cruel and heart wrenching disease and watching her go through this is devastating. I look at her laying in her bed almost lifeless, and am having trouble reconciling the fact that this is the same women who, just a few months ago, seemed full of life. The disease had progressed but she was up, still walking with help, had lots of laughter. I just pray that God will release her and take her home, but in the meantime, it is comforting that she is unaware of what is happening. It seems very cruel for us though.
    God Bless you and your family ~ Marlee

  23. I am an RN and have cared for many patients with AD over the course of my career. I recently retired to care for my new granddaughter while my daughter works. I have just been diagnosed with mild cognitive impairment. I know that it is very likely that I will go the same way your mother went and it terrifies me. I have seen too much and know too much. I would trade pretty much any medical diagnosis for this. I would prefer a short bout of cancer, no matter how painful, to the prolonged decline in function and cognition that is AD.

  24. My mother died of Alzheimer’s in 2005. I used to ask about the progression of the disease but the nurses, caregivers and Drs were always nice, but evasive. Your description mirrors much of my own experience. My mother woke up one morning and just stopped walking, then a year later she just forgot how to swallow and stopped eating. The day she died they called me at 6AM and I went to see her and spent the day with her. She was sleeping the entire time and I sat there and talked to her and played her favorite music. It was a nice day, a calm, peaceful transition to death. I need to write up my mother’s story in detail for my children to read. It would be valuable information for them should I also end up with Alzheimer’s. Thank you for sharing your story — it will help everyone who reads it to understand. The progression of the disease is different for everyone, yet there are also many similarities that the Drs (in my case) just didn’t want to voice.

  25. Thank you so much for this. My mom died of alzheimer’s after battling with the disease for years just a few days ago, and although i felt sad, i didn’t feel that gaping hole everyone talks about when going through the loss of a dear one. I thought i was a monster, that maybe all the years i resented my mother for her neglect -whether it was for work, traveling, etc etc- had made me insensitive to what had happened to her.
    It still scares me, of course, but when i read that part about saying goodbye becoming easier for the family, it made sense. I had cried so many times before, i had wondered and angered about how unfair it was, how fast the disease had worked, how young she had fallen to it, and we as a family had been preparing ourselves for this loss for years now. We already had been in the stages of grief, bargaining, depression, anger, and by the time she died, all we had was acceptance and peace. Peace, because she didn’t suffer, and peace, because it was finally over.
    Again, thank you so much for writing this, it made me feel not alone.

    1. It is called anticipatory grief, when caretaking a loved one whose personality and memory is slipping away towards death. And the death feels different than other death. Mom died this afternoon. I have felt resentment also, and wonder now if I was selfish. All of it is understandable in you, and I appreciate your writing so eloquently..

  26. My mum passed away 24th July 2018 2 weeks after her 91st Birthday. She suffered Alzheimers Dementia for the last 3 years with a Benign Tumor against her brain apparently growing very slowly. She was in a nursing home for 2 and a half years. I noticed she was not eating or drinking well, not talking much at all. The last week she would only say a word like she was unable to say what she wanted and was crying very depressed. She was also falling asleep on the chair with her left hand shaking really bad. I called the head nurse and they said its the last stages of Dementia. Yes maybe but I need her checked at the hospital. They took her and sure enough she had a very bad urine infection plus the Alzheimer’s/Dementia was the last stages. They gave her the intravenous antibiotics plus fluid (glucose) . She was always sleeping she unconscious when she did open her eyes I would give her a drink with a sipper cup and ice-cream very slowly but I had to do this. She was so hungry and thirsty my heart melted. She was so strong though. They told us she only had 3 weeks or less she wont get better and no more medication would be given. So every I would go in the morning with my sisters there and I would keep giving her drink and ice cream very slowly when her eyes were open. This was continuous for the last two weeks but doctors still never said when her last day is. The last week at times her cheeks would go cold then her arms then they were warm again. She was a fighter. Three days before she passed away I gave her a drink with the sipper cup and oh my god she put her hand up slowly to my chin and rubbed it then she did it again and my sister saw this. We were shocked did I cry. I felt she knew who I was. My mums last day in this world not that I knew but her face was really pretty looking younger lost heaps of weight. I told my husband to bring my dinner this was at 4.20pm and I will be staying at the hospital that night. She was breathing heaving that day but I thought she was okay. Well at approx 4.50 I saw her take a deep breath I thought, but she was still breathing the same after that so I waited for 5 minutes and panicked. It was time for a cigarette, so I said to her as I always did mum I will be back just going for a smoke I will be back. So I quickly went came back looked at her she was still breathing and my sister called at that time, looking at my mum and said to my sister “My god mum just took her last breath” My mum did not want to go alone, she was always scared of death and I believe she waited for me to get back. This was the saddest day of my life no matter how old my mum is always my mum.

  27. Thank you for sharing your journey. We are reaching this stage with my Mom. Hearing the details of how it may happen makes me feel a bit more prepared. This is exactly the information I was looking for when I googled “last days with Alzheimer’s.” Thank you and I’m sorry for your loss.

  28. I am so sorry for your loss and grateful for your wish to share what happens with others who have gone or are going through almost exactly the same journey. It has brought me some comfort to know what is happening. The worst part is the suffering, it is so cruel there is no relief. Our Mother is pleading with us to make it stop and I wish I could. The doctors and nurses only answer us with they are monitoring and responding as things develop. So thank you again for your words as hard as they were to read. I know I’m not alone.

  29. I am so sorry for your loss. This was wonderfully written and obviously difficult to experience and write. My mother is going through this. It is hard on everyone. You helped me understand and I thank you greatly for that.

  30. Thank you so much for sharing your story. I am litterally in tears reading this. This is so helpful to me in knowing what to expect with my own mother’s life. Thank you. My condolences on your loss.

  31. I, too, can relate to this article and the comments. My mom had Alzheimer’s. I even wrote a book about it called, “My Mother Has Alzheimer’s and My Dog Has Tapeworms: A Caregiver’s Tale.” We often have to take care of so many things at once, don’t we? The only thing I knew about Alzheimer’s before we were faced with it, was that patients often didn’t remember things, or people. I thought, I could just remind my mom whom I was, (and maybe who she was: an accountant, a golfer, a wife, a mom, a friend, etc.) I had no clue about personality changes, illusions, delusions, aggression, fussiness, etc. There are so many things I wish I knew before hand. I think more and more, people are getting a fuller understanding of this dreaded disease. Articles like this inform, even if it’s unsettling. I think the more we know, the more we can harness our collective knowledge and experience to help others.

  32. My wonderful husband died on 10th September this year after a long struggle with Lewy Bodies Dementia.
    I was his only carer and the rollercoaster of emotions I endured for the past 2 years was unbearable. During that time I knew he was deteriorating, he suffered hallucinations, mobility problems, agitation, anxiety and needed help with all aspects of daily living. Worst of all was his inability to communicate, many times when he was trying to tell me something, I felt so bad that I couldn’t understand him and I know how frustrated he would be. Some days he didn’t know who I was, that was heart breaking. Gradually his mobility declined and he started having falls, he lost a lot of weight during the past year and began to lose interest in his food. We had planned to move in to an assisted living apartment and one suddenly became available. I had to make the decision to move , as I thought that was the best for us both. During the arrangements for the move, I had him attend a day care facility, this was the first time we had been apart in 2 years. He had a couple of falls there and for some weird reason became very hyper active, walking around a lot and moving things everywhere. We moved in the apartment but I don’t think he understood where we were. He had a bad fall 2 weeks later and went in to a rapid decline. He couldn’t get up or down from a chair or in and out of the car, then one day he went off his legs completely. He started sleeping all the time and ate very little. I couldn’t lift him, it was then the Doctor decided he needed some respite care. He went in to a Dementia Nursing Home, I thought he would be rehabilitated and come home after a few weeks. Imagine my shock when they told me he was at the end of his life. I didn’t believe them. The day after he was admitted, they had discovered he was holding food in his mouth and not swallowing, he had become unresponsive by then. They decided to withdraw, fluids and food. I ranted and raved and cried, how could they do this to him. They explained he could choke or aspirate. I had to accept their decision. He spent the next 6 days sleeping, but did not need any medication.I had to get my daughter over from California. When I whispered to him that she was coming he smiled. The night before he died, I stayed in a chair beside him all night, he woke at 6 and opened his eyes, his breathing very slow, I stroked his head and said all the things I wanted to say, he died very peacefully. My grief is unbearable and I miss him so much. But I know his suffering is now over.

  33. I just wanted to say thank you, my Mom has dementia and is 92 now, her memory is great both in long term and short term, her fight is with the hallucinations at night due to the Sundowners she has, that troubles her.
    I am thankful for your insights and thoughtfulness regarding your Mom, I appreciate the difficulty, and how much it means to me.
    I am truly sorry for you loss.

  34. my dad has been in a care home since may 2017 following 2 falls which moved his vascular dementia on to the point where he was bedbound, doubly incontinent and unable to feed himself. in fact the only thing he was doing by himself was breathing.it has been so hard watching him deteriorate . the disease is so cruel because you have the odd day when he seems a little better but then you come down to earth with a bump as the bad days return. During the past 4 weeks he has not eaten much and has lost 1st. I take food to the home which I know he likes and sit there trying to encourage him to eat. It’s heartbreaking. He is now being given milkshakes to try to build him up. He has arthritis throughout his body and is in lots of pain. I am dreading talking about giving him patches because it will make him drowsy and he wont be able to eat at all.
    I thank you for sharing your story. it has helped me because I feel dad is now getting close to the end, He has had several TIA’s and I am hoping for his sake he has a stroke and goes peacefully. It’s awful to think like this but I just don’t want him to suffer.
    Sobbing my heart out as I write this.
    God bless you all.

  35. My mom is 84 yrs old and lives 20 hours from me and is in late stage decline with AZ. I found your article and appreciate your candid and heartfelt story about your mom and family journey. Not knowing is the hard part and the disease ultimately overtakes the person’s cognitive function and they die. That road is not always clear and your story shines light on what to expect. Thank you.

  36. Thank you! My mom is at the end of her Alzheimer’s journey and hasn’t eaten or drank in the past five days. She is on home hospice so I am her sole caregiver. Watching a loved one die a slow and painful death is emotionally exhausting. I kept searching for answers on what to expect and am so thankful for your article. It has given me great comfort. Thanks again.

  37. Thank you… this was so well written. I am at the end of the journey with my mom. Your words brought me such comfort. I will cherish these last few weeks.

  38. Jasja,
    I am currently sitting in my mother’s room at her nursing home.
    My sisters and I are on day three of our vigil. The staff here and the hospice staff have been amazing. They have been very honest about each step we are to go through… so far we are on the same path you have documented
    We too are walking down memory lane. We have laughed and cried and laughed until we cried. She is the center of the stories. As we share the tales she is in her bed in the center of the three of us, mouth agape , taking long breaks between breaths waiting for eternal peace.
    We share a kindred tale.
    Before her disease had progressed too far our mother made it clear she wanted to donate her brain so it could be studied to help find a cure. She did not want another to endure this disease; as a patient, a caregiver, a child, a parent. No matter how it touches , you will never be the same.
    This is the most difficult thing I have ever done. I love holding my mother’s hand and am sad that after the next 24-48 hours I will never do that again. I vacillate between selfishly wanting her to lay here a bit longer so I can continue holding her hand and stroking her brow and then hope that our good Lord allows for her peaceful exit soon.
    One thing for sure is I hate this cruel disease and pray we will never have to go through this again.
    Thank you for sharing your painful story and I am sorry you too had to fell this unbearable pain. I appreciate the frankness of knowing what is yet to come.
    Peace and Blessings

  39. Sorry Icould not read all of your story tonight! I saved the story And Will read it later on…My 78 year old husband is fighting the same disease… 😪😪😪Very Very sad and painful… Xox

    1. This was a very helpful article, thank-you for writing it. I recognized so many of the disease that you talked about- like forgetting how to get in the car. My mom’s decline has been exasperated by the COVID-19 situation. In March she was walking independently with her Walker and in June she was placed on hospice care after she stopped eating and after that she stopped being able to walk well and got a wheelchair. We were not able to see her often because of the no visitors rules, because of the coronavirus, so we moved her home. In our home she has been eating and drinking better, but she is getting much more one on one care now. I need to sit with her and not feed her, but remind her how to eat. She really is doing better in our home, but that is relative. This article helped be prepared for what we signed up for and I do appreciate that you wrote it.

  40. Thank you for writing about your mom, my brother has just been diagnosed with Alzheimer’s, i am sat here crying for what is to come. I will be their every step of the way with him, I pray to god that it progresses slowly.

  41. Deeply touched at how beautifully you have penned down each detail.
    Your mother is alive through your words.
    Lots of hugs to you for having bravely fought these years and building up memories to cherish!

  42. I Have been scoring the internet looking for some kind of time line or what to expect. My grandmother has declined so drastically in the past 4 weeks. She is barely eating, if at all, minimal drinking and near constant sleeping. Tonight I called the nurse in her room to ask her to watch how she was drinking. She said yes it seems like she’s having some troubles, but no coughing is ok. Unfortunately I was just getting ready to tell her about the coughing. I laid with her for hours tonight crying uncontrollably. Thank you for this article and the small bit of peace I get knowing what’s most likely ahead

  43. Thank you for sharing this. I just went through this exact same scenario with my mother. She was diagnosed at 64 and just passed away at 74 from pneumonia due to complications of swallowing. After 10 years of constant worry, guilt and a grieving process that became a form quite like PTSD, I (and she) are finally free. She passed away peacefully on Morphine with me. What I did not expect was the physical reaction I would have afterwards. As if every cell in my body had been holding the constant grief finally let go. The pain was excruciating. It only lasted anout 12 hours, but this is something I had not expected nor had been warned about. I am happy and relieved for her. She’s free now ❤️

  44. My twin sister at age 59 was diagnosed this August with early onset Alzheimer’s. She lost her job as a dental hygienist after working 30 years in that field. Her grown children are scared and in denial. Her second husband is divorcing her. I am left with caring for her. Your story was painfully enlightening. I will always be there for my sister. I am terrified.

  45. My Mom has been diagnosed with dementia & the Dr. says it’s not Alzheimers. I so appreciate this article but it confuses me as well. My Mom also has kidney failure & has been on dialysis for almost 4 years. First peritoneal, done at home every night, then she couldn’t remember how & that was our first clue that her mind was going. She is in a nursing home & being transported 3 times a week for hemo dialysis. We don’t see her often as we are in another state, but we talk to friends & her social worker several times a week. We’ve been told that when we know she has no quality of life, we will stop the dialysis and it will be an “easier” end. She still has her kind & comical personality and we’re so grateful for that. I think about her with everything I do, every where I go. I am already a high anxiety person and this is terrifying because I have no control. And it will not get better for her. Father God, please help me and all those going through this horrific disease.

  46. Hi my father hasn’t been diagnosed but I already know because he sometimes ask me who I am and he literally kicks in my bedroom door on a regular he thinks people are in my room harming me it is pretty Scarry to be woke up at three am to us father kicking in the door with a huge crow bar and shoving it through my closet and into his room with a kitchen knife in his back blue jeans pocket

  47. Please know that the end can also be more merciful. A dear man for whom I became legal guardian was still able to recognize people, walk and eat one day, yet died two days later. All of his systems shut down very rapidly and he was given morphine. I knew we had been incredibly fortunate that it was not more prolonged; may it happen this way for others.

  48. Thank you for sharing. Dealing with much the same with my mother. Feeling horrible guilt for placing her in a care home. Each time I see her, it seems a little more of her is gone. The diagnosis we have is vascular dementia, Alzheimer’s and Parkinson’s. With a possible Lewy Body Dementia too. They really don’t know. What I do know is, there is nothing that can prepare you to watch a loved one die slowly a little piece at a time like this. Regardless of the research you do, people you speak to, tests they run…the answer is always the same ‘we don’t know why’ ‘we don’t know how long’ ‘everyone is different’. The hardest thing is the long-term grieving process. At least when someone dies you can grieve and attempt to move on, with dementia etc. the grieving is daily for months and years. You become a fragile shell of your former self. Finding the strength to continue is almost impossible at times. Some days I spend home from work, just to cry the day away. Alas, all I can say is, thank you for sharing and my hope is they find a cure soon, before we are all struck with this horrible disease.

  49. My mother passed in almost the same, excruciating way yours did, almost to the last detail, 5 days before yours. I am so sorry.
    It will haunt me forever.

  50. Thank you for sharing your story. I must confess though that I completely disagree with the last paragraph. I too have cried a million tears over my dad’s dementia and when he died it was like someone took my beating heart out of my chest. I wished he would have had a sudden event that would have taken him instead of watching him not eat or drink. It was torture to see him wither away and the feeling of hopelessness was unbearable for me. I wanted to feed him. I wanted to give him his favorite drinks but I couldn’t. It wasn’t easier because of the anticipatory grief. It was like a kick to the stomach that he suffered in life and now his death wasn’t sudden. My heart aches for him and that he had such a terrible time over several years. The mental anguish I suffered watching this happen before my eyes has been something I will never get over. I wouldn’t wish this on anyone. It is comforting to see though that we are not alone in our pain. My heart goes out to all who have had to deal with this.

    1. Stacy,
      I am just reading responses to the letter posted and saw your response. I hope the pain is lessening for you. My father had PD with dementia and suffered for 7 years until he passed. He died in Feb 2011. I still am overwhelmed with grief when I think of the injustice and brutality of this disease. At his robust self, my strong Father weighed at 190-200. He weighed 87 lbs when he died. Toward the end he couldn’t swallow, was fed liquids, then we were asked if he would want feeding tube, he had said no previously. We said no. So he starved to death. For 7 days, he labored to breathe only to die. I am still overwhelmed by what horror could overtake such a good, good man. You are not alone in your grief Stacy. There are so many of us who are so broken hearted. Take care of yourself. Jennie

  51. Thank you all for sharing your stories. My dad is in the late stages, he has Alzheimer’s and also vascular dementia. He is currently in hospital awaiting a CHCP assessment which is next Tuesday. We, his family are so worried where he will end up, and how long this ghastly disease will continue to rob him of himself, bit by bit: his mobility, continence, ability to string a sentence together, dress himself, feed himself, to read, write or draw (he was formerly a talented artist) have all gone. Now, today I notice that they have started to add thickening powder to his drinks (his food has been puréed for the past few weeks). Reading your article, I am hoping that he won’t have to suffer too much longer as he is clearly having difficulty in swallowing. A particularly distressing aspect is that he is so agitated and is, at times, shouting out and swearing profusely – he would be horrified if he knew. Yet, despite all that is lost of him, he still says ‘thank you’ and kisses the back of his female family ‘s hands. His only signs of pleasure is when we feed him ice-cream. It certainly is a hideously long and painful goodbye. My heart goes out to all of you touched by this cruel disease.

  52. Thank you. I needed to read this. My mother is going thru the same and I’ve been avoiding acknowledging and dealing with reality. Sharing your experience will help me start to do so. Again, thank you. And I’m so very, very sorry for your loss.

  53. I am the main caretaker for my father who is in the late stage of Alzheimer’s. He is receiving hospice care at home. It has been a long journey. He is 100 year old, he is tired and not eating. My sister who is another state made one request that he not receive Morphine. I don’t want my father to suffer and I’m also trying to honor my sister’s wishes. Of course, there is some resentment on my part since she has not been around. She is retired and has more time than I do.

  54. I have just read your article and this is exactly what my poor mum went through. From being quite ok in July 2018 and living in her own home she passed away in a nursing home on the 30th Dec 2018 age 73. I’m struggling to come to terms with the speed that this horrible illness took her from our family. The only comfort I can get is she is now out of suffering and now with my dad ❤️

  55. Thank you so much for sharing your heart felt, very personal story. I think we are always looking for answers and ways to cope. Looking for what to expect in the coming years or months. Thank you for letting other people know of your experience. Bless you and your family.

  56. Thank you for sharing your journey. I know how difficult it is. My Mom passed 8/17/08 and your story brought so much of it back. My Mom stayed home with us at the request of my Dad and the help of Hospice care – they were amazing. I was a new nurse at the time and the supervising Hospice nurse was so comforting to my Mom, my Dad and all of “us kids”. The frustration of watching my Mom starve to death was heart wrenching and then the introduction of sublingual morphine didn’t make her hungry but relaxed her and that was all we wanted. She lived in the same house for 53 years and only had one other previous address yet while she was still verbal all she could say was “I want to go home”. It made us “crazy” until we stopped trying to figure this out and just accepted our lot with what this horrific disease handed down to us. I guess there were a few good things that came out of this terrible time. It unified we siblings in a way I never thought possible. I pursued and achieved a nursing degree after losing my old job and becoming one of my Mom’s primary care givers and best of all, my Mom’s youngest grandchild, my niece, has earned a phD from NYU and hopes to be instrumental in conquering this menace. God Bless all who are touched by this disease – patients, families, friends, medical staff and researchers.

  57. Thanks for this insightful and educational article. It is hard to see my father who was active and loved to eat , not want to eat or leave his bed . However, he’s incredibly happy and thankful for everything. One positive of the disease is he had lots of regrets about not seeing his family for a long time and now he has forgotten that period.
    It has allowed us all to go back in time with him and cherish the great times and love we share. I’m sure the journey will be more difficult as the disease progresses but we are all thankful for the time we had to heal our souls and send him off surrounded by love..

  58. I am so sorry to everyone, to read the pain they have suffered and are suffering, from the author to all the comments beneath it. I am sat in my office and could quite easily shed tears were co-workers not around. My aunty is in a care home in the UK and has suffered from Dementia for around 6/7 years. It fills me with absolute dread that other family members could suffer from it. Prays and thoughts to everyone connected with this brutal disease x

  59. It has given me much comfort to read such personal stories about the devastation that is alzheimers. I thank every one of you for sharing. I too along with my brother, sister and my dad ( who suffered a massive stroke just four months after losing mum) watched my beautiful mum deteriorate very quickley to the end stages of alzheimers in 2015. It has affected me deeply over the last few years.No one can prepare you, for the end. My mum that that i loved so much starving to death, losing the function to swallow. Someone who had taken time and pride in preparing meals, enjoying their food, and caring for family, deteriorating faster then your own mind can deal with. My mum died in her own home which was a blessing. I pray that one day soon a cure to this awful disease named alzheimers will be found.

  60. I am in tears. My grandma passed away a few years ago with the same illness. It comfort me to know she was not aware she was going to die.
    I remember she used to repeat “Gloria a dios” all the time diring her final stage. I didn’t know why she used to do that. Sometimes I wish I could go back and time and hug her. I miss her so much.

    Thank you for sharing your story.

  61. Thank you for sharing what was a very difficult time for you and your family. It has answered many questions for me. I hope your memories of your mother in a healthier state bring you comfort.

  62. I was 17 when my mother started forgetting my name. It hurt 😞 so much. When she was forgetting how to talk she would only say that’s the truth sweety in Spanish. My mother was a strong woman did everything in the house. To see her slip away broke me in to one thousand peices . I saw her get a sizure it was so scary she fell back and her eyes went all the way upwards and grinded her teeth. Once she thought it was time to go to church at 3:00am . We had to put special locks so she could not open the door. I would bathe her fix her hair put her night Gown. My brothers and sisters would help too. My dad was devastated. I’m sorry 😐 too emotional to keep writing. Hoping for a cure soon. My heart goes out to all of you . We all share the same pain. 😔Sam gonzalez.

  63. Thank-you For openning and sharing.
    This is a real eye-opener, thanks.
    My prayers of peace and comfort for you and your family and for anyone who directly or indirectly is going through this.
    My mother was diagnosed with early on-set dementia and is now on the last stage of DA
    God bless us all

  64. I am doing some research for school and I wanted to know if you could tell me how your mother got Alzheimer’s disease. If you can please reply to my text A.S.A.P that would be nice. I know how it feels to have a loved one with Alzheimer’s. I have an aunt fighting with this disease. She is in her late 80’s

  65. I just cried for the first time in months, maybe over a year. I am 23 years old right now and live with my parents. My mom has Alzheimer’s. I have watched her decline for over 6 years since her original diagnosis of MCI. We recently put her in a memory care facility. Its been a few weeks since I had read this article but I must say it has helped me come closer to acceptance in regards to the progression of this disease. Life is a blessing and I know now more than ever how it must be cherished. Thank you for the article!

  66. Tears are in my eyes as I read this. My mom has dementia and the ability to feed herself has declined. I’ve watched her lift a fork to her mouth and then put it back down with the food still on it. She’ll hold her medicines in her mouth and not swallow. It was only today after speaking to someone else who’s father recently passed with from the disease that I started searching for more information about the end and came across your story. My heart goes out to all of you.

  67. Thank you ever so much for this detailed , insightful, loving description of your mother’s experiences with AZ. It is very similar to what my mother experienced. And it helps to explain some things that I either did not know or had forgotten. My mother passed away on 4/30/2018 after suffering from dementia / AZ for at least a decade. PEACE !!!

  68. Wow! Thank you for sharing your story about your dear mother. May she rest in paradise. My mother has Dementia and has been in my care for the last 7 years. It is very hard. I stumbled across your website by search as I always do when my mother is falling asleep in her chair the moment she starts eating and I google a new behavior thinking that their maybe an answer, a ray of hope, something that will help me feel better about what I witness everyday. I wish this upon know one. It is difficult to watch. The only thing that saves me from crying every single day and night is that I have put myself in a place of a caregiver and not my moms daughter. I had to accept that long ago. Otherwise I would be a complete mess and could not function. I pray abundant blessings for all that have shared stories of there love ones and to those still in the trenches.

  69. The title of your article caught my eye–“What I Wish I knew Before My Mother’s Alzheimer’s Death”–I’ve intended to write a similar article and this was what I was planning for the title. My mother died August 25, 2018, cause of death: CVA (Brain Stroke) complication of Alzheimer’s Disease. We all have a story, a journey full of pain and anguish; this disease is horrific! I read countless articles and nothing prepared me for the final months of her life. I won’t go into all the details (this I will save for the article I do hope to write) but simply want to say that what I wish I knew was that although the average person (I consider myself one) thinks Alzheimer’s is about memory loss–forgetting people and places but when in reality it’s so much more than that it’s about the brain losing function in all ways–in the end the brain doesn’t tell the body it needs to urinate or have a bowel movement; it doesn’t tell the body it needs to turn over; it doesn’t tell the body it needs to eat; it doesn’t tell the body its too weak to stand. This is part of the memory that gets destroyed that has the largest impact on them and those who care for them. This is the part the average person doesn’t know. I certainly didn’t and wasn’t prepared. Fortunately, I realized before it was much too late, I diligently cared for her along with others—trying to explain that I was her brain and without others that understood this and took this same approach she would have suffered even more. Her bladder would have burst if it wasn’t for me being there (in her ALF) realizing that she hadn’t peed in almost 24 hours. She would have vomited feces if it wasn’t for me insisting we get her on a bowel regimen and get her up on a commode–her body wasn’t defecting lying down. She would have developed even more bed sores, she did have one that was considered unstagable (aka severe) developed before I realized the impact of the disease. I turned her every 3 hours through the evening and a night (when I was her sole caregiver) in hopes of healing this and preventing others. Her skin would have further deteriorated if it wasn’t for me insisting we give her protein shakes (protein is essential for the body to heal). Her brain would never heal, I knew this but I couldn’t bare to just walk away and leave her in the hands of others to suffer. I’m proud of what I did for her, wish I knew more sooner so my advice to any of you in this same position please remember–the brain is dying and ALL body functions will ultimately be impacted. Those who care for them are their brain, in the most basic way.

  70. If they are unable to get up, it would perhaps be best to keep them in bed. Instead of using diapers, use disposable bed protectors or chucks. Diapers are not good for bedridden people because you do not want feces to stay and accumulate. Beneath those use cloth chucks which can be used to turn and pull up the patient. As for a feeding tube, that’s iffy. I seen research that it does not increase lifespan or quality of life and they have their own complications. However, I also read people’s blogs it can take two weeks for them to die of dehydration and starvation. I would only do a feeding tube as an absolute last resort. It would require a hospitalization to get it inserted but just overnight or even short-stay. Although people glamorize “dying at home” it is not very pleasant for family to go though. Death can be a very lingering process. I suppose hospice plays a part feeding them narcotics which would hasten the process but the disease process is going to kill them anyway.

  71. My mom was diagnosed in Sept 2011, but was showing signs for several years prior to that. My father took care of her, and she hid it pretty well. In August 2014, my father passed away. I thought maybe with some visiting nurses and outside help, she could still live on her own for awhile. When we got back to her house from the hospital from when my dad passed, I purposely waited for her to unlock the front door, she could not do it. Immediately I knew she could not live by herself. I tried having her live with me and my family, I have a wife and 3 daughters. This lasted about 3 months, as I work a demanding job and my wife was done with taking care of her. My wife threatened to leave, and I chose my family over my mom. We placed her in an assisted living facility, and things were ok, but not long after she started wandering. So we placed her in a more secure facility, but eventually her bathroom habits deteriorated, and we were forced to move her again. Now she is in a full memory care unit, a very depressing place. I still remember the first time I came to see her and she looked right through me – unaware of who I was. That is the case every time I see her now. I feel guilty about not going to see her more but it depresses me and I can’t be the father and husband I need to be if I am depressed. I now get calls weekly saying she’s fallen again, or won’t eat, etc. I find myself looking at how long she may have – her mother also had Alzheimer’s and lasted to 79 – my mom is currently 76. I know she would not want to live like this (it is in writing). I wonder if it really will be a relief when she passes or not, at that point I will have no living parent. Will I wish I would have visited more even though she doesn’t know me?

    1. Hi John,
      In my opinion–YES, go see her as often as you are able. My mother did not know who I was either.. I still have a vivid memory of a time she looked up at me and said–I don’t know who you are but I do know you’re taking very good care of me–thank you. I strongly believe although they don’t know the relation they know you as familiar and someone who cares and loves them… I feel your pain. It’s been 8 months since my Mom passed there are good periods and bad… For me, the hardest part is wishing I could have helped her sooner and of course, I worry about what lies ahead for me and my son. Have you showed her any pictures of herself when she was younger? I put together a photo album of pictures of my mom that spanned her entire life. She rarely recognized the older her but would identify with younger pictures ie high school graduation. I hope you have her in a nice place. Unfortunately, not all are nice… its dreadful what happens when they are in horrible places (they exist) and no one is going in to check on them. Squeaky wheels get grease….. go often and at unpredictable times. Watch over her as you would want someone to be watching of you.

      1. Thanks Lori. I used to show her photos of my girls and ones from her albums, and that was an activity we really enjoyed. Now she is non-verbal and doesn’t have the attention span. I do check on her and have another family friend that does the same. I think they are doing the best they can. My mom fights them when it is shower time and before she got sick she was the most gentle person I knew. Like you, I worry mightily about whether myself and my brothers will suffer the same fate. Even more than that, I worry about my daughters. I donate to the Alzheimer’s association in hopes they find a cure to this heartbreaking disease.

        1. Hi Again John,
          Curious, have you checked to see what medication they are giving your Mom? I discovered that many facilities have a NP that prescribe anti-psychotics and other medications that from what I saw can really alter their behavior–subdue them so they are more ‘manageable’. I insisted they take my Mom off some of them and saw a dramatic change in her behavior, she didn’t seem so ‘doped up’. She still needed anti-anxiety medication PRN and they switched her to Seroquel in the evening which helped her sleep. This is an awful disease and is unfortunately not fully understood. I do wonder if the medications prescribed to control their behaviors is actually causing more harm than good. Might be worth checking… Good luck.

  72. We are going through this exact thing right now. Daddy has already ceased eating and drinking because of the swallowing issue. So much of what you wrote about, I needed to read. It’s hard to find specific details on the end of life of an Alzheimer’s sufferer. Thank you for being straight and bold. God bless you and your family.

  73. Bunny is my mom and she was diagnosed with AD last week. It came as no surprise to anyone, she has been struggling with memory. Bunny was the baby of 8 and out of the 8 she is the 5th to get this awful disease. My grandparents lived to be in their early 80’s and had no sign of memory loss or any other dementia/alzheimer symptoms. The other 3 siblings died under the age of 40, so we will never know if they would also get AD.
    We started noticed a change when my older brother died of cancer, he was 56. Prior to his death, my mom lost her last 2 siblings to AD. These horrible losses all happened within an 18 month time period. Bunny never bounced back. Riddled with depression, we thought it was her memory loss etc was from all of the grief. She lives with her husband an hour away from the rest of our family. Even though it is only an hour it might as well a million. I can’t be with her as much as needed. This will be a long haul and it is breaking my heart.

  74. My Mom was diagnosed with Alzheimer’s in 2015, and then fell twice in 2016 (once she broke her hip and once she fractured her pelvis) so spent much of 2016 in and out of hospital on strong pain-killers and suffering from hospital delirium and UTIs. In late 2016, we moved her into a long term care home, and she never really recovered her mental faculties. She mostly knew us, but she was often aggressive, hostile and rude with her caregivers (not my mother at all!). They would call me to get her to calm down and she would scream out her fear and anger at me and I would try to stay reasonable and kind but then hang up and cry for a long time.
    At the end of February 2019, I read your story, Jasja, and shared it with my siblings. I had been looking for information about what the end might look like. The way you described your mom’s situation resonated with me, and it firmed up a sense I had that my mom was nearing the end. Mom had been catatonic on several occasions (just staring off into the distance) and was often so deeply asleep in her chair that we could not awaken her. She was also needing more and more help with eating. Reading your story helped me be more prepared when Mom began to fail on April 26th. Although they thought she would die that day, she lasted 10 days and passed away on May 7 2019 at 4 am.
    The care home brought a cot, and I was able to sleep beside her each night, listening to her breathe and hopefully comforting her a bit with my presence. The wonderful staff at the care home occasionally sat with me in the late evening and told me funny stories about Mom and about how they had grown to love her. I learned something from them: The whole time Mom had Alzheimer’s, I would tell anyone who would listen that this was NOT HER. My mother is funny! smart! creative! opinionated! amazing! She managed a tax department! She travelled the world! She could make anything with her hands! She raised five children! But the staff at the care home had accepted Mom exactly as she was. They didn’t need to know who she had been – they loved her as she was and treated her as a whole person. They did better for her, in that regard, than I did.
    During her last 10 days, Mom did seem to know us occasionally, or at least knew that we were people that loved her. She occasionally tried to talk and sometimes a sentence or two made sense. When the PSWs would shift her position in the night, she would complain and once she said, “Stop that, you crazy fools!”
    There was often several of us family members in the room and we felt that she was comforted by hearing us talking and laughing and reminiscing and singing hymns. For one whole day and night, my mother “talked” to people we could not see. She would raise her hands as though reaching for someone and sometimes seemed to point. Her words were unclear, but we could tell she was comfortable and happy and laughing. Except once she made me laugh when she started to frown and then said, “Is that you, Mother?” My mom had had a rocky relationship with her mother !!
    Then Mom stopped talking for a day or so and really seemed to not be aware of us, though we continued to talk to her and sing songs so that she could hear us. Just in case. Her breathing got a lot sharper, more like a pant, over the last day (May 5 night and most of the day May 6). At around 10 pm on her final night, her breathing suddenly sharpened even more and got ragged and she seemed to be struggling. I rang the bell and the doctor came. He told me she only had moments to live, and advised giving her morphine to help ease her “air hunger”. He and the nurse reminded me that this would hasten her death, but we were prepared for this decision and I agreed. As it turns out, my Mom lasted several hours more and they gave her two more shots of morphine. Eventually her breath stopped sounding so scary and began to slow down. My husband, brother, and son had joined me and we sometimes counted up to 50 seconds between breaths. I even dozed off a bit, but my husband woke me up and alerted the others when he heard a change. We all listened, holding our own breaths, and finally heard her exhale three short gentle peaceful breaths. And that was that.

    Afterward, with the help of a wonderful PSW, I washed my mother’s body and smoothed her favourite Avon moisture cream all over her skin. I cried and talked to her, and said good-bye to the small marks on her body that I knew so well. I combed her hair and tried to smooth her face (her mouth was hanging open). My sister and I had picked out one of Mom’s favourite blouses for this occasion, and I put Mom in it with a pretty shell underneath and a decorative necklace. I drew a white blanket up over her waist and arranged her hands so that she looked peaceful. We were able to sit with Mom’s body for several hours in that way, and it was intensely meaningful for us all. We noted how smooth and calm her hands became – they no longer showed the knotty pain of arthritis or the raised veins of age.
    When the funeral home came to collect Mom, the care home had a little ceremony where they gathered the staff (and any residents who would like to come) in the front lobby and said a few words before Mom’s body left the building through the front door (the same way she had arrived). It was so peaceful and dignified. So healing.
    Jasja, thank you again for sharing your story. You helped me prepare for my own mother’s passing, and you have given me a place to share my own last moments with my Mom. My thoughts are with all of you on this page, and elsewhere, who have walked (or are walking) along this difficult path.

  75. Thank you for your brutal honesty. It was so brave but so heart wrenching to read. This is such a cruel disease but I too believe that trying to hang on to the person through memories of ‘ who they really were’ is the only way to go.

    Much love to you!

  76. My mom passed 4/10/19 after a 10 year battle I was her primary caregiver at home, she was bedbound for 8 years with frozen limbs, I thank God for her everyday, thought I would share my tribute to my Shero I wrote for her Eulogy, God bless you all!

    Dear Mom,
    What a great time we’ve had, it has been such a pleasure to know you, so many things I’d like to say and express but guess what? We have already said and done everything God had planned for us to say and do. I couldn’t ask for a more genuine blessing in a person, mother and best friend Mom. It took me a while but it was recently revealed to me as I came to understand that you are God’s child and belong to him and now have your angel wings to travel through heaven enjoying God’s peaceful creations of beautiful colors, music and freedom from the recent diagnosis and earthly experience of Alzheimer’s Disease and I feel you beat it with a vengeance, I’ve never treated you according to the statistics of the disease, no matter what doctors and reports said you woke up everyday and continued to teach me, when you were able you’d utter a word here and there and that gave me hope and happiness beyond words, you looked at me with loving eyes, rubbed my hand as prayers were prayed and books and bible verses were read and we were a team that couldn’t be beat. I am so grateful God trusted me with the care of his child and allowed me to become an advocate for your well-being. Yes, my heart now experiences an unimaginable emptiness and feels shattered but remembering your daily patience with me to learn, learn, learn, pray, pray, pray, never give up and never give in we both experienced daily God given miracles of healing right before our very eyes and your strong will to live has taught me a humbleness I didn’t know existed and has provided me a newfound confidence that with God all things are truly possible. You are the strongest woman I have ever known and I miss everything about you and thank God for you and have enjoyed keeping in touch with your friends which have become my friends. I’ve learned so much more about you, that you were your own person and had a full life way before I ever existed and I respect you for continuing to be who you were meant to be despite all odds. I am happy beyond words that the Lord chose you to be my mother and to have raised me to the best of your ability. God has shown me many things through a journey that started and ended with you and I thank him for giving us this special time together to reconcile our previous life experiences and allowed me ample time to be able to express to you all things I felt needed to be conveyed to you from the bottom of my heart and allowed me the ability to be able to console you and keep you as comfortable and safe as possible. I could speak volumes about your love for God at a young age, delicious cooking of special foods we love, your good looks, your beautiful smile, your funny ways, your kind heart, the love you freely gave to all placed in your path, family or not, your strong will and determination in life and being a fantastic and strong woman, mother, grandmother, daughter, sister, auntie and friend and when you could no longer express yourself freely, silence still did not allow a total shutdown of the love that I felt from the depth of your heart, spirit and soul everyday I was with you. I now have my own testimony of the goodness and greatness of the highest calling I have ever experienced in my life besides the birth of my children and hope I am able to help and encourage others as a result of this special gift of grace. I am forever grateful for everything I have learned, created and experienced with you daily Mom and have truly and thoroughly enjoyed your unconditional love every moment of the day and night we slept and spent together in the same room this past ten years, it has been my highest honor and great pleasure to provide care to and for you as you have also willingly done for me and mine over the years and I hope and pray I have met all of the highest expectations of our heavenly father as you have and as I have expressed to you how very proud I am of you.
    I love you my dear Mom, forever yours, forever your daughter- until we meet again in the heavenly realm
    DyJil Allygro Robinson

    1. DYJil,
      I am crying tidal waves of tears. I believe you have written the most endearing tribute to your Mother that I have ever read. I, too, have a Mother who is now in her last days, I have been her caretaker for the past 8 years …I will now always think of myself as God’s caretaker on earth for his special child, my Mother. Thank you for your heart and your deep faith. Jennie

  77. Thank you. I cried so much reading this but I also have been crying for years because of my moms Alzheimer’s. She’s in stage 6 now. She’s lost so much weight.

  78. Thank you for the wonderful information. Now I know just what is happening with my mum. She was diagnosed back in 2012 but we knew there were problems well before this, when she almost set fire to the house, forgetting something on the stove. We had to have the gas disconnected after that and get her “meals on wheels”. She was SO determined to remain in her own home, refused to believe there was anything wrong. But she finally had to go into care almost 3 years ago. Now almost 96 she is in the last stage of AD. It is SO sad to see this once active, intelligent teacher, writer, tutor become a poor, thin, little old lady not eating, mostly sleeping, seeming to be in pain, with slight groans,with oxygen and fluids (antibiotics for the inflenza A as well), trying to get out of bed , out of her chair etc etc. Wondering just how long this last stage will last? Sometimes she knows we are there. Other times she sees spiders on the wall, or asking where is the fireplace? (used to have one 70 years back!) Dear Lord take her to Yourself gently when it is time. Thy Will be done. Denise

  79. Wow- so many stories, bringing up so many tears- I cant breathe- but could not stop reading them either. I too share the grief and loss of a beautiful Mother “Hope” who lived till 90 years- and passed on to be with Jesus 11/14/18- Diagnosed with ALZ in 1997′ – lived with me and had a slow progression up until about 2012′- So, for about 6 years it was declining and became unsafe to have her at home as she was quite mobile and feisty, leaving the house to go walking. She had to go to a secure memory care then nursing home. I was there 3 – 4x a week – giving all her baths and washing fixing hair, taking on outings and bringing our beloved Golden Retriever in for visits. In 2018 a slowing of appetite and increased sleeping , difficulty swallowing occasionally became evident- Although she had her 90th Bday August 2018 and managed to eat cake and ice cream just fine 🙂 Hope was a devoted Mother, wife and Minister for Jesus Christ- Missionary and wonderful intercessor of prayer- Her life was a testimony and inspiration for me and many. She used to think she was in a ministry retreat in her Memory care and the nurses were fellow ministers- she called the lady’s ‘sister’ and men ‘brother’ as she lovingly referred to all her christian family- in her former years. She was walking until her last month of life – where she became ill due to gallstones and obstruction. She was treated for infection and returned to nursing home sleeping a lot and refusing to get up out of bed and few days would be interested in eating a little but the days of eating quickly left and dwindled to me getting a few strawberry popsicles a day in if I was able to wake her enough, many times I gave her tiny bites crushed like a slurpee-her eyes closed the entire visit. But her hand would move, foot would move – I knew she knew I was there-
    We began hospice and just about 1 month to the day she returned from the ER for Antibiotics and treatment for the gallstone infection- she passed away in her sleep. No distress, no medications- and only a slight red spot on her one buttocks- I prayed to the Lord- please Father do not let her suffer pain, or let her get pressure sores- or let this stage go on and on-
    It was only about 4 weeks- I was not there when she passed- I actually had just left a few hrs before to go get some sleep- she looked very comfortable – but deeper and deeper than I had noticed in sleep- I held her eyelid open brief few seconds before I left and told her- “I see you” 🙂 I came every other night during those 4 weeks- after work, just me no other family to help or come, only 1 friend came by once- it was a very difficult time and task to walk thu- feeling physically alone thru it- had a couple of long distance friends calling – and a 20 yr old Son- at home- tried to understand, did give me hugs at night when I came home and cried.
    I am a nurse- not practicing for years- but watching Mommie not eat, drink and lose the plumpness of her skin and become so thin over such a short time was intensely painful and I felt helpless. So, i resorted to making sure her body and skin were care for impeccable the best I could. Since nutritionally I could not do much- I also laid next to her- sang gently the gospel hymns of old she loved and now I love! She used to sing with a beautiful soprano voice!
    Mommie- I told her her Gma and Aunts were so looking forward to seeing her in heaven- and that she and I had been given 55 years here in this life together- and she was 90 years and her body was tired and ready- I told her how I would be fine- Jesus would care for me in her absence and that I would see her soon- (one day to the Lord is as a 1000 to us) so it wont be that long. 🙂 I told her many things- over the years that I have no clue if they registered into memory- but I know, she knew she was going home to Jesus and I know she knew me! Right up till the very last night- I am incredibly thankful to have been given the time- years and years to have cared for, bathed, fed and loved my dear Mommie (Hope) don’t you just Love that name!! She was and is a big shoe to fill- But God is working in me through the grief process even now months later- coming up on her 1st Birthday not in this world- apart from me- as I was there with her for 54 of them!! I believe she is more alive now than ever before in the arms of our saviour- Jesus
    I have much to remember and much to cherish- took may photos- and movies and journaled through it all – also much pain and suffering as there were many unjust things done to her through facility caregivers and management of them. I was her advocate and never was there a more fierce protector- But God.
    In the midst of every possible situation- good and bad and hurtful- He was with us!
    I pray that for each one reading this- you too seek God for the abounding love and comfort and sustaining strength he can and does supply- Praise be to God and to him be the Glory-
    My Mommie and I will be reunited- and for that I am so grateful- and Jesus makes that possible. I pray that the Lord comes into your life and heart right now- and helps you and you loved ones and for those with grief and suffering- I pray he helps you in your times of need-
    Blessings to all of you- from me & in memory of my dear HOPE-

    1. Sorry for your loss. My dad died of a different disease about 8 years ago. I didn’t understand about the morphine either. I know they did not tell me that my father would go to sleep and not wake up again. I would have wanted everyone to be able to say goodbye before that. At the very least, I would have liked to know that it was going to be my final goodbye.

      Now, I know to hold off on morphine for my mom who has Alzheimer’s, if it means that people can say goodbye.

  80. This was such a sad and beautiful story all in one. I lost my mother 4 months ago suddenly her heart just stopped. The grief and hurt I feel is so intense. I wish I would have had a few days or even seconds with my mother. She wasnt even sick she just past away suddenly. Thank you for sharing. God bless all of you.

  81. Thank you for sharing. My grandfather died a few hours ago and I miss him. I can’t seem to stop the tears. It’s the first close family member I’ve seen pass. I’m still trying to come to terms with what has happened. I’ve never felt pain like this. But it means much to me to know that I’m not alone. This was very similar to what happened to him.

  82. I’m so sorry for your loss and that your mom and family has been on this awful journey. Thank you so much for sharing. My husband is in stage 6 and had taken a very steep decline. It is helpful to know that I might only have months with him as many sites say end stage is years.

  83. Mom is 94 and has had dementia for 10 years or so, slow but progressive, she still walks but forgets where the bathroom is, and has lost bladder and bowel control most of the time, some days she can’t figure out what the fork is for, somedays she will speak almost a sentence and the next day she is unresponsive and the next she speaks nothing but Jibberish. She knows me some days but not others. Then there is Dad he is 92, he had a few unusual moments but was able to manage the house, Mom, finances etc. 3 years ago I took over the bills, then he had a moment that seemed to flip the switch. It was like he had a stroke but the tests were all negative. But from the moment on his needs for help increased rapidly. Changing clothes, showering, shaving, eating all became a nuisance within a year. Now he can barely walk from the bedroom to the living room without becoming exhausted. He has no memory of what he ate 15 minutes ago. Now he is restless all night, kicking his legs every 15-30 minutes or so. I sold my home and moved in with my parents 2 years ago, I am exhausted but happy I can still keep them at home but not sure how to handle what’s coming and the speed, let alone the fear of it lingering for years or ending tomorrow- either way it’s heartbreaking watching them decline and wondering what’s next. It’s like losing them over and over again, it never gets easier, just gets harder and harder. I have so much empathy and compassion for family and caregivers. This is hard emotionally and physically. I just hold them, rub their backs and comfort them as much as I can.

  84. Thank you so much for this article. My family is going through this process right now with my grandmother, and it is so difficult to see her go through this terrible disease. Her mind is leaving
    us so quickly, but like you said, it is reassuring to
    know that she herself isn’t aware of what is happening. It also is a blessing in disguise as we are able to see her often and tell her we love her and fill her with hugs and kisses. Thanks again for the beautiful article… seeing a loved one go through this is something I wouldn’t wish upon anyone ever.

  85. Thank you for your story. God bless you all and I truly feel every pain you endured. I wish I had known all the steps also. The youngest of 5 children and I’m with her through this demon disease the majority of the time. I wanted to see, learn, watch the Drs, nurses, caregivers to see how they dealt with this monster disease. She was allergic to morphine but they felt it would ease her pain. She would breathe like a marathon runner being frightened for her life and trying to get away. How could that relieve anything for her!! It tormented me to watch her. Asking them not to give it to her but when I would leave, they would put it inside her cheek saying it was a small dose and she would be feeling better. HOW could that make anything better? When one of the siblings came they asked for it for her because they couldn’t understand why I would want her in pain and not give the morphine to her but they wouldn’t stay around when they saw what it did. My nights are still without much sleep because of this horrid disease attacking my mom and I was helpless to someone I loved and what now seemed to be 2 in one, mother/child waste away. 6:36pm on 02/22/2018 mom left me. Today is 11/14/2019 and I still hold her last heartbeat on my fingertips. Why God? I know He had a perfect plan with all of this but human flesh is very hard to shake off. God help each person who’s life is touched with this and other horrid diseases! And Cancer? Yes, she dealt with breast cancer first! My mom-The Prize Fighter/My hero forever and ever, AMEN

  86. This has helped me a lot come to terms with my father dying just this week. He went through these same symptoms of decline but also following a stroke on top of the chest infection. I’ve been blaming myself for not spotting the signs of imminent death sooner and thought he would recover but I realise now it was only a matter of time. That time I wish I had spent visiting him more but I have to believe he wasn’t in pain or sad to be in a nursing home and not at home with my mum. The most evil disease has just taken another loved one but I appreciate those people who share stories. It makes it less lonely to think it’s happening everywhere. I send my deepest respect and warm wishes to all families dealing with this.

  87. My mother has Alzheimer. She’s 62. She’s now losing the ability to swallow, has lost a significant amount of weight, and not able to communicate. And we are scared. It’s me and my family that are taking care of her because we don’t have caregivers etc. I work part-time now. I read what you wrote and it’s helpful for me and my ai lings and father. Somehow we are prepared… even though our hearts are broken

  88. Active ambulatory Alzheimer’s mom was A broken burden. Her kids starved her, so that we would allow them to put mom in a ‘care’ facility. She only lasted 10 weeks. She entered ‘walking a daily mile w/a smile’ w/ me and our dog. Mom left 10 weeks later ‘high on drugs often, nailed in a coffin’. It was disgusting! For 2 weeks, NP drugged mom up on benzos to ‘cure mom’s anxiety’. Mom wasn’t anxious. She was BORED! Daily benzos caused instability and repeated falls at night while alone in her room. Mom finally fell and broke her femur and was left to die in bed. No One called 911! WTH?! Mom was put on hospice. Yet mom only got extra Tylenol for a week! Mom died 3 weeks later. Hospice is brutal and barbaric! Protect your loved ones from the ‘Silent Hospice Holocaust’!

  89. my husband has had Vascular dementia for nearly 10 years and up till last June I have looked after him but he collapsed at home he had a water infection chest infection and got Sepsis And was in hospital for 2 months he is in a lovely home and they do look after him very well but have noticed in the last few weeks he has deteriorated ever so much he is unable to focus on his food he has always had to be fed by the staff but he now put tissues ,tinfoil ,in his mouth and tries to get through the walls in the home he doesn’t sleep at night he wanders he really is going down hill fast but reading your article I know what is going to be in store for me and it is nice or comforting to know but I know it will break my heart to loose him and as you know from experience you lose them twice over you cry so much so not many more tears can you shed it is so heartbreaking to see this man being from a perfectionist in woodwork and everything had to be right to see him as he is now

  90. My mom died a week ago may 5 2020…she was 61…i miss her so badly…and I can’t get the image and the sounds she was making before she passed…this is such a cruel disease.

  91. Thank you so very much for sharing your mom’s story and your story. I cried and I also found it sad yet comforting because I don’t feel alone in this. My mother-in-law is hospice with dementia. She is out of state and my husband has traveled to see her, knowing this will be his goodbye. We are both struggling with this, especially him. How do you say goodbye forever when your mom is still alive? There is no good answer. I did find it comforting to know how the disease progresses and that she will not be aware of what is happening to her. The thought of her passing alone, however, without her immediate family by her side is excruciatingly difficult.

  92. Thank you for sharing your story with us.
    I am here becasue my father 77year old, has been suffering from dementia for 8 years. Dementia came after surgery, probably wrong anesthesia. Lost memory, speech, doubly incontinent, bed ridden for 7 months. Now is finally on morphine by mouth every few hours. He has not had food or drink in two and half days, we had to give morphine since we saw distress in coughing and clenching hands. doctor decided to keep giving morphine next day. I wish we had stopped and see if there was any recurring pain before giving morphine again. What disturbs me and my mom is that his eyes are open staring toward the ceiling. I feel like we are killing him and want to stop morphine. It is the most horrible feeling in my life.

  93. Thank you. This is striking home right now and we are struggling with it. Mom is fading. This helps.

  94. I cant remember how many times I cried reading this. My father in-law passed away from Alzheimer, and now my mother in-law is in stage 6. I learned lots about the disease from my father in-law being sick so I know what to expect with my mother in-law. My wife is really having a difficult time being with her mother in this stage, after losing her father. As soon as her father passed her mother got sick with same disease. My wife was adopted and her mother is saying things now that she would have never said before as a result of the illness.. I have stepped up and drive to her mother at least every 2 days making sure she has everything she needs. Food cleaning products, toilet paper, the whole works. We have a long road to go still, but I’m happy that I can be their for my wife and her family during these difficult days. God bless to everyone struggling to find meaning in this terrible disease.

  95. Thanks for sharing your last experiences with your mother. My sisters and I are going through the exact same thing. The last days. It’s heart-wrenching to read your story, yet I see that we will experience this same phase now. Coincidentally I live more than 2 decades in Holland, but am an American. When my mother had the first real noticeable signs of Alzheimer’s in mid-2017, we indeed starting losing the person who was ‘our mother’. I flew to the states every 2 months for 2 weeks to help out my sisters with her daily care and arrange things as she declined. Mom went into a very good Alzheimer’s care facility just after COVID broke out. COVID prevented us from visiting and doing the type of care and activities we had planned leading up to her admission there. I write this response after today having a COVID test so I can fly back to the US this weekend for the 1st time in over a year for what may be the last days. Hartelijk dank! 🙂

  96. Wow, I’m sitting with my dad now during his end of life care. This story is very relatable. Thank you so much for sharing your experience in such an eloquent way.

  97. Jasja – Thank you for writing this piece. My mother was diagnosed with Alzheimer’s about a year ago. She was having bouts of not recognizing my Dad and thinking he was a dangerous stranger. Her memory had been declining for years, but the first big wake up call came the night that she first forgot who my Dad was and started getting belligerent. The second wakeup call came just last week, when she disappeared from her bed in the middle of the night and was found 8 hours later by the police as she wandered the streets barefoot. Now we are going through the painful process of putting her in memory care. It is very hard because she is still very cognizant and aware much of the time. I dread the day when we leave her at a facility and she realizes what is happening. She will be heartbroken and feel so betrayed. My one comfort is that, as you pointed out, it will not be long before she becomes unaware of her situation. And that will be a blessing.

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