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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.

Are you prepared for end-of-life issues? Take this survey by the A-List, a partnership of organizations fighting against Alzheimer’s, to find what you need should be thinking about when it comes to end-of-life care.

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 function.

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:

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 –>

34 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.

  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.

    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

  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.

  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.

  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.

  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

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