What I Wish I Knew Before My Mother's Alzheimer's Death (2022)

By Jasja De Smedt Kotterman | March 16th, 2018

Pages: 1 2

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.

(Video) What I Wish I Knew Before My Mother's Alzheimer's Death | Being Patient

What I Wish I Knew Before My Mother's Alzheimer's Death (1)

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.

What I Wish I Knew Before My Mother's Alzheimer's Death (2)

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.

(Video) Dr. Oz Opens Up About Missing Signs Of Mother’s Alzheimer's | TODAY

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.

(Video) Will I Get Alzheimer's Like My Mom? (How to Lower Your Risk)

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.

(Video) Should I Tell or Remind My Person with Dementia of a Death in the Family

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.

(Video) The Last Stage of Alzheimer's: What You Need to Know | Brain Talks | Being Patient

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

Pages: 1 2

FAQs

What are signs of impending death in Alzheimer's patients? ›

Signs of the dying process
  • deteriorate more quickly than before.
  • lose consciousness.
  • be unable to swallow.
  • become agitated or restless.
  • develop an irregular breathing pattern.
  • have a chesty or rattly sound to their breathing.
  • have cold hands and feet.
3 Sept 2021

What happens before an Alzheimer's patient dies? ›

Some other common signs that someone with Alzheimer's disease is close to the end of their life include: They speak very few or no words. They're not able to do very basic activities such as eat, move from a bed to a chair, or change their position in a bed or chair. They can't swallow well.

How long does Alzheimer's typically last from the first symptoms until death? ›

The average life expectancy after diagnosis is eight to 10 years. In some cases, however, it can be as short as three years or as long as 20 years. AD can go undiagnosed for several years, too. In fact, the average length of time between when symptoms begin and when an AD diagnosis is made is 2.8 years.

When someone with Alzheimer's asks for someone who has passed away it is best to? ›

Don't give too many details; this may overwhelm them. Answer questions as honestly as possible. Use clear words like “died” instead of “passed away” or “at peace now.” Try not to protect the person from the truth by suggesting that the person who has died is away and will return later.

What hospice does not tell you? ›

Hospice providers are very honest and open, but hospice cannot tell you when the patient will die. This is not because they don't want to, it's because they can't always determine it.

At what stage do dementia patients forget family members? ›

Stage 6. In stage 6 of dementia, a person may start forgetting the names of close loved ones and have little memory of recent events. Communication is severely disabled and delusions, compulsions, anxiety, and agitation may occur.

Do Alzheimer's patients suffer? ›

A person with Alzheimer's might express discomfort by wandering, moaning, or refusing to eat or sleep, but the same behaviors might express loneliness, or hunger, or sadness—or they might be symptoms of the disease itself.

What are the signs of last days of life? ›

End-of-Life Signs: The Final Days and Hours
  • Breathing difficulties. Patients may go long periods without breathing, followed by quick breaths. ...
  • Drop in body temperature and blood pressure. ...
  • Less desire for food or drink. ...
  • Changes in sleeping patterns. ...
  • Confusion or withdraw.

How long do late stage Alzheimer's patients live? ›

The symptoms of Alzheimer's disease worsen over time, although the rate at which the disease progresses varies. On average, a person with Alzheimer's lives four to eight years after diagnosis, but can live as long as 20 years, depending on other factors.

What is the most common cause of death for Alzheimer's patients? ›

The leading cause of death in Alzheimer's patients is a secondary infection, commonly pneumonia. Bacterial infections could be easily remedied with a course of antibiotics in healthy individuals.

What triggers Alzheimer's to get worse? ›

other long-term health problems – dementia tends to progress more quickly if the person is living with other conditions, such as heart disease, diabetes or high blood pressure, particularly if these are not well-managed.

At what stage do Alzheimer's patients sleep a lot? ›

Sleeping more and more is a common feature of later-stage dementia. As the disease progresses, the damage to a person's brain becomes more extensive and they gradually become weaker and frailer over time.

Do people with Alzheimer's understand death? ›

It's not uncommon for a person with Alzheimer's disease or dementia to not recall the death of a loved one. In fact, some Alzheimer's sufferers still speak as though their loved ones are living years following a death.

Should you tell Alzheimer patients the truth? ›

You must also learn how to handle the day-to-day challenges of caring for a person with Alzheimer's disease. Most experts say that if the affected person asks you what's wrong with them, you should be honest. Knowing that the problem is a disease, not "insanity," is often a relief for the person affected.

Should you tell someone with dementia that a loved one has died? ›

If the person is in the early stages of dementia, it is usually a good idea to tell them about the death initially and see how they react to the news. This will give you an idea about what to do and whether to tell them again if they keep forgetting (see 'The person's past bereavements' below).

What is the injection given at end of life? ›

Morphine and other medications in the morphine family, such as hydromorphone, codeine and fentanyl, are called opioids. These medications may be used to control pain or shortness of breath throughout an illness or at the end of life.

Does hospice care change diapers? ›

The hospice team also teaches the family how to properly care for the patient – such as changing adult diapers, bathing the patient and preparing the right meals according to the patient's recommended diet plan.

What does transitioning mean in death? ›

Transitioning is the first stage of dying. It describes a patient's decline as they get closer to actively dying. Generally, when one is transitioning, they likely have days — or even weeks — to live.

What stage of dementia is not bathing? ›

Dementia stage 5: moderately severe cognitive decline

At this point, a person may no longer be able to carry out normal activities of daily living (ADLs), such as dressing or bathing, without some caregiver assistance.

What are signs that dementia is getting worse? ›

increasing confusion or poor judgment. greater memory loss, including a loss of events in the more distant past. needing assistance with tasks, such as getting dressed, bathing, and grooming. significant personality and behavior changes, often caused by agitation and unfounded suspicion.

What is the longest stage of Alzheimer's disease? ›

Middle-stage Alzheimer's is typically the longest stage and can last for many years. As the disease progresses, the person living with Alzheimer's will require a greater level of care. During this stage, the person may confuse words, get frustrated or angry, and act in unexpected ways, such as refusing to bathe.

Is Alzheimer's physically painful? ›

As far as we know, the changes in the brain that occur in Alzheimer's disease and other forms of dementia do not cause pain.

How does a person with Alzheimer's feel? ›

People with dementia often experience changes in their emotional responses. They may have less control over their feelings and how to express them. For example, someone may overreact to things, have rapid mood changes or feel irritable. They may also appear unusually distant or uninterested in things.

What goes on in the mind of a person with dementia? ›

Common symptoms of dementia include: confusion and needing help with daily tasks – such as shopping or paying bills. problems with language and understanding – including often being unable to find the right word, or having trouble following a conversation.

What are signs of transitioning to death? ›

  • Skin of the knees, feet, and hands may become purplish, pale, grey, and blotchy or mottled.
  • Periods of rapid breathing, and no breathing for brief periods of time, coughing or noisy breaths, or increasingly shallow respirations, especially in final hours or days of life.
  • Other changes in breathing.

What does moaning mean when dying? ›

Breathing may become irregular with periods of no breathing or apnea lasting 20-30 seconds. Your loved one may seem to be working hard to breathe -- even making a moaning sound. The moaning sound is just the sound of air passing over very relaxed vocal cords. This indicates that the dying process is coming to an end.

What do you expect in the last week of life? ›

However, below is a general overview of signs that a patient may be entering the final weeks of life: Increasing weakness and/or exhaustion. Increase in the need to sleep, having to spend the large majority of the day in bed/resting. Difficulty eating or swallowing fluids.

Why do Alzheimer's patients stop eating? ›

As dementia progresses it affects the area of the brain that controls swallowing. In advanced dementia the person may have a weak swallow or lose the ability to swallow safely.

What stage of Alzheimer's is aphasia? ›

Word-finding aphasia is a common symptom of early-stage Alzheimer's disease, but there are others. 4 Your doctor will ask about your loved one's symptoms and may want to speak with family members. Interestingly, aphasia affects a person's second language before it begins to affect their first language.

What stage of Alzheimer's is weight loss? ›

Research shows that weight loss occurs frequently in the early stage of dementia and becomes more pronounced as the illness progresses.

Does Alzheimer's run in families? ›

Family history

Those who have a parent, brother or sister with Alzheimer's are more likely to develop the disease. The risk increases if more than one family member has the illness. When diseases tend to run in families, either heredity (genetics), environmental factors, or both, may play a role.

How long is Stage 7 Alzheimer's? ›

Stage Seven: Very Severe Cognitive Decline

Because people in stage seven often lose psychomotor capabilities, they may be unable to walk or require significant assistance with ambulation. This stage lasts an average of two and a half years.

Is dementia worse than Alzheimer? ›

While dementia is a general term, Alzheimer's disease is a specific brain disease. It is marked by symptoms of dementia that gradually get worse over time. Alzheimer's disease first affects the part of the brain associated with learning, so early symptoms often include changes in memory, thinking and reasoning skills.

What should you not do with Alzheimer's? ›

Here are our top 10 "don'ts" when it comes to interacting with someone who has Alzheimer's disease:
  • Don't Ignore Them.
  • Don't Talk to Them Like They're a Young Child or a Baby.
  • Don't Use Terms of Endearment Instead of Names.
  • Don't Assume They're Confused All the Time.
  • Don't Quiz Them.
10 Feb 2020

What stage of Alzheimer's affects walking? ›

People in the final stage of Alzheimer's disease require help with almost all their basic daily activities, such as sitting up, walking, and eating. During this stage, people may lose the ability to engage in conversation. They may have difficulty chewing or swallowing.

Can Alzheimer's get worse suddenly? ›

But sometimes this confusion gets worse very quickly, over a matter of hours or days. If this happens with your loved one, take them to a doctor as soon as possible to be sure that it's not delirium. You should also get medical help as soon as possible if they seem more confused than usual and have a fever.

What time of day is dementia worse? ›

When you are with someone who has Alzheimer's disease, you may notice big changes in how they act in the late afternoon or early evening. Doctors call it sundowning, or sundown syndrome. Fading light seems to be the trigger. The symptoms can get worse as the night goes on and usually get better by morning.

What are the nine drugs linked to Alzheimer's? ›

Drugs That May Cause Memory Loss
  • Antianxiety drugs.
  • Cholesterol drugs.
  • Antiseizure drugs.
  • Antidepressant drugs.
  • Narcotic painkillers.
  • Parkinson's drugs.
  • Hypertension drugs.
  • Sleeping aids.
9 Feb 2016

What stage is aggression in Alzheimer's? ›

The middle stages of dementia are when anger and aggression are most likely to start occurring as symptoms, along with other worrying habits like wandering, hoarding, and compulsive behaviors that may seem unusual.

Do dementia patients know when they are dying? ›

End-stage dementia symptoms may indicate that the patient is dying or close to death: Problems with everyday functions, including bathing, dressing, eating, and going to the bathroom. Inability to walk or sit up in bed without assistance. Inability to speak and show facial expressions.

What is end-stage Alzheimer's? ›

In the final stage of the disease, dementia symptoms are severe. Individuals lose the ability to respond to their environment, to carry on a conversation and, eventually, to control movement. They may still say words or phrases, but communicating pain becomes difficult.

How long does end-stage dementia last? ›

However, end-stage dementia may last from one to three years. As the disease advances, your loved one's abilities become severely limited and their needs increase. Typically, they: have trouble eating and swallowing.

How do you know when a dementia patient is ready for hospice? ›

Patients with dementia or Alzheimer's are eligible for hospice care when they show all of the following characteristics: Unable to ambulate without assistance. Unable to dress without assistance. Unable to bathe properly.
...
Protein calorie malnutrition:
  1. Weight loss over 11% or.
  2. BMI<18 or.
  3. Albumin <3.1.

What is the surge before death called? ›

This difficult time may be complicated by a phenomenon known as the surge before death, or terminal lucidity, which can happen days, hours, or even minutes before a person's passing. Often occurring abruptly, this period of increased energy and alertness may give families false hope that their loved ones will recover.

What is the last breath before death called? ›

Gasping is a brainstem reflex; it is the last respiratory pattern prior to terminal apnoea. Gasping is also referred to as agonal respiration and the name is appropriate because the gasping respirations appear uncomfortable, causing concern that the patient is dyspnoeic and in agony.

Should you let a dementia patient sleep all day? ›

Providing the person doesn't appear to be uncomfortable or distressed, then sleeping more during the day isn't normally a reason to be worried. However, if a person is lying down in bed and asleep for most of the time they will need to be looked after to make sure they don't develop any physical health problems.

What should you not do with Alzheimer's? ›

Here are our top 10 "don'ts" when it comes to interacting with someone who has Alzheimer's disease:
  • Don't Ignore Them.
  • Don't Talk to Them Like They're a Young Child or a Baby.
  • Don't Use Terms of Endearment Instead of Names.
  • Don't Assume They're Confused All the Time.
  • Don't Quiz Them.
10 Feb 2020

Is Alzheimer's inherited from mother or father? ›

We all inherit a copy of some form of APOE from each parent. Those who inherit one copy of APOE-e4 from their mother or father have an increased risk of developing Alzheimer's. Those who inherit two copies from their mother and father have an even higher risk, but not a certainty.

Do Alzheimer's patients suffer? ›

A person with Alzheimer's might express discomfort by wandering, moaning, or refusing to eat or sleep, but the same behaviors might express loneliness, or hunger, or sadness—or they might be symptoms of the disease itself.

What is the most common cause of death in dementia patients? ›

Results: The two most common causes of death were bronchopneumonia (38.4%) and ischaemic heart disease (23.1%), whilst neoplastic diseases were uncommon (3.8%).

How long can a bedridden person with dementia live? ›

Most patients may survive for one to three years.

What causes dementia patients to suddenly get worse? ›

other long-term health problems – dementia tends to progress more quickly if the person is living with other conditions, such as heart disease, diabetes or high blood pressure, particularly if these are not well-managed.

What it means when a person with dementia says I want to go home? ›

Often when a person with dementia asks to go home it refers to the sense of home rather than home itself. 'Home' may represent memories of a time or place that was comfortable and secure and where they felt relaxed and happier. It could also be an indefinable place that may not physically exist.

What are the signs of last days of life? ›

End-of-Life Signs: The Final Days and Hours
  • Breathing difficulties. Patients may go long periods without breathing, followed by quick breaths. ...
  • Drop in body temperature and blood pressure. ...
  • Less desire for food or drink. ...
  • Changes in sleeping patterns. ...
  • Confusion or withdraw.

What are signs that dementia is getting worse? ›

increasing confusion or poor judgment. greater memory loss, including a loss of events in the more distant past. needing assistance with tasks, such as getting dressed, bathing, and grooming. significant personality and behavior changes, often caused by agitation and unfounded suspicion.

Videos

1. From 2014: Glen Campbell's last song will make you cry
(CNN)
2. Dementia LAST Stage Before Death ~ ABCs of Dementia FAQs: L
(Dementia With Grace)
3. Alzheimer's at 39: Chris' story
(AlzheimersResearch UK)
4. How Angels Create The Near Death Experience Tunnel & More!
(JeffMara Podcast)
5. Losing Our Mothers
(BuzzFeedVideo)
6. Losing Greg: A Dementia Story
(Journeyman Pictures)

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