fbpx
Generic selectors
Exact matches only
Search in title
Search in content
Search in posts
Search in pages
riskfactors Alzheimer's management brainhealth research lifestyle

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.

The author, second from left, with her family in February 2017.

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 –>

97 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.

  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..🙏

    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

    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.

      https://mobile.nytimes.com/2017/05/25/world/canada/euthanasia-bill-john-shields-death.html

      Kristen
      Oregon

    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.

    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.

  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.

  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.

  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.
    David

  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

  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.
    Y

  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.

  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.

Leave a Reply

Your email address will not be published. Required fields are marked *