By Jasja De Smedt Kotterman
As with many Alzheimer’s patients, it was the family who suggested my mother get her memory tested. She was 68 years old, repeating herself, losing things and occasionally paranoid and combative with my father, something we had never seen from her before. We thought she might be depressed, but the notion that she might have dementia crossed our minds. She was diagnosed with mild cognitive impairment, the earliest stage of forgetfulness, in 2008, but was not officially given the diagnosis of Alzheimer’s until 2010, when she had an epileptic seizure. After that, her memory and cognitive faculties deteriorated sharply.
This is not the story of an Alzheimer’s patient swinging between the ignorance of their forgetfulness and the panic of watching their own ongoing decline come into focus, nor the story of the fear, the bouts of irritability, and the deep sorrow felt by family members watching their loved one slowly disappear before their eyes. We went through all that, yes. But this is the story of the last three excruciating months of my mother’s life. She died in her family’s arms at the age of 76, having battled Alzheimer’s bravely for more than eight years.
What does it mean for a person to die from Alzheimer’s? Alzheimer’s is a terminal illness. Like many family members of the newly diagnosed, I researched the various stages of Alzheimer’s, as well as the experience of patients and caregivers. I wanted to know what to expect. I knew that complications might occur—pneumonia, weakened immune system, blood clots—that might be attributed as the trigger of the end. What I couldn’t find is how someone dies from Alzheimer’s. What do those complications look like in an Alzheimer’s patient? What does it mean for the patient and their family? I never found an answer until I watched it for myself.
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.
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.
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.
She was gurgling when we came, a horrible gurgling cough that I knew well from my premature babies, sick with yet another horrible cold—lungs filled with mucus they were unable to clear because they were too young to cough well, and their airways too narrow. My mother couldn’t clear her cough, either, because she had forgotten how to cough, forgotten that coughing would clear the airways, that it was important to spit or swallow the phlegm. Instead, she sputtered. It was distressing to see her like this, and we asked, like we always did, “Are you in pain?” For the first time in the eight years that she battled the disease, she nodded yes, yes.
It all moved quickly in slow motion from there. We had made the decision as a family to forgo hospital intervention to treat infections or provide fluids. No IV drips, no feeding tubes, no ventilators. As a terminal disease, that could postpone her life a few weeks, but not really improve the quality of those last weeks, and we knew she would never have wanted that. We took the doctor’s advice to start the morphine drip to keep her comfortable.
In hindsight, I didn’t really understand what that meant. I didn’t understand that when she closed her eyes to nap that afternoon, that she would never open them again. I didn’t understand that when she still did a slow tap-tap-tap on her head, it would be the last time she would move. Either I misunderstood the doctor, or I didn’t want to understand the doctor—I thought she would be comfortable, without pain, but still awake. I thought she would still be able to see us and hear us. And maybe she did know we were there, but from that point on, she was not conscious anymore.
We kept vigil for three days and nights, all three of us sleeping in her bedroom. The first night was awful–listening to her struggling to breathe and powerless to help her. The following morning, her temperature spiked and her heart rate rose to 140. That heart rate stayed high until the very end, but her temperature varied, from high fever to chilled cold hands. Her body was losing liquids, and so her heart had to pump faster to move the blood. “The body is fighting the infection,” said the doctor. “Maybe she will recover on her own.” False hope, but I can’t blame the doctor for not knowing what would happen.
By the second night, she seemed to be breathing better. We spent the day with her, talking to her, lying down next to her. We combed her hair, put on makeup. The nurses had decided not to change her anymore – the diaper was dry, it wasn’t necessary, and it was better not to disturb her. “Let her go gently,” the nurse said, “the less the living interfere, the easier it will be for her to separate and move on from life.” Surprisingly comforting words.
My mother’s mouth was open and slack, like when you fall asleep in an airplane, with your mouth hanging open. Morphine, apparently, makes all muscles relax, including the jaw–there was nothing to be done about it. I knew my mother would hate looking like that, so I put lipstick on her to make her look as pretty as possible. We used lemon infused cue tips soaked in water to moisten her mouth, keeping her lips and breath as fresh as possible.
I look back at those three days and feel good about them. It was a special moment—all four of us together, listening to the soothing classical music station, listening to her breathing and reminiscing about my mother in her healthy days. We spent a lot of time discussing preparation for her funeral. It felt weird to do that in front of her, so we involved her in the conversation. Would she want this music, or that flower? We napped, we drank lots of tea and ate our meals in the room. The nurses were clearly used to this, and brought us our meals, and everyone gave us sad smiles as we walked the halls.
It was a special moment—all four of us together, listening to the soothing classical music station, listening to her breathing and reminiscing about my mother in her healthy days.
The doctor came in that Friday morning, and said it would probably be a matter of days. “Wait,” I said, “I thought she was fighting an infection, and might recover?” It is amazing how strongly we want to avoid the end. I just held onto the words of hope but prepared myself. When would she pass away? We didn’t dare leave the room, in case she took her last breath at that moment. It happens, the doctor said—the loved one goes to the bathroom and comes back, and the patient is gone. We were determined not to let my mother leave this world alone.
I asked how she was going to die. What would cause the heart to stop? After so many days of not eating and drinking, there was no fluid left to go through her kidneys. Her kidneys would stop working, and the toxins would build up. The lung infection would seep into the neighboring tissues, and there would be widespread infection and septicemia. Eventually the toxins would reach a level that would impact the brain, combined with the fact that there was less oxygen entering her bloodstream and more carbon dioxide building up. All of these would eventually stop her breathing and her heart would slow to a halt. I regretted asking for the details—I didn’t want to think of the slow poisoning that was going on in my mother’s body. I was just thankful for that morphine drip and how she seemed unaware of the dying process.
That afternoon at 4 p.m., my sister had to go pick up her husband from the train station. I lay down next to my mother and dozed off next to her for a while. An hour after my sister left, it dawned on me that my mother had stopped breathing. I listened and put my fingers on her pulse. Her heart was still beating strong and fast. And I realized, this was it, this was the moment … but my sister wasn’t there. “Quick,” I told my father, “come here and hold mom’s hand.” I messaged my sister. I begged my mother to please keep breathing and wait for my sister. It seemed like eons, but she did, she took another breath, and then one more, and I felt her pulse slowing, and then my sister rushed through the door, grabbed my mother’s hand, and my mother’s heart took its last beat.
My mother died at 5:05 p.m. on the fifth day of the fifth month of 2017. She died in the arms of her family, peacefully and in beauty.
Even though I researched what I could about how the disease would ultimately end, I was still surprised by what happened. I learned that it is a disease, one that kills; it isn’t old age that kills, it is the disease shriveling the brain and the important parts of the body that keep it functioning.
I learned that there is a silver lining to the disease. By the end, the patient is unaware of their condition, unaware that they will die from it. Not like a cancer patient, that is fully aware of the terminal nature of their disease until the end. An Alzheimer’s patient isn’t aware and that is a blessing.
I learned that I was lucky to have a long time to say my goodbyes and thank yous and I love yous to my mother.
I learned that we grieve for so long for the disappearing loved one—I have cried buckets of tears over the last few years—so that in the last few months, weeks and days, saying goodbye is not that painful. And that is the one good thing about Alzheimer’s, it makes saying goodbye at the end easier for the family and for the patient.
Jasja De Smedt Kotterman
Jasja is Dutch-Argentinian living in Hong Kong with her twin boys and Dutch husband. She grew up in South America, but considers Holland home. Her mother, Ada, left Holland when she was 21 to teach in Venezuela, met her Belgian husband there, and together with him continued living an international life. She did not return to Holland until Alzheimer’s took away all her languages except her mother tongue, Dutch. She lived the last two years of her life in a care home in Holland. Jasja would fly back and forth to Holland three to four times per year to spend time with her mother. Jasja’s sister lives in Amsterdam and would visit their mother on a weekly basis, and was the main point of contact for the care home. Ada’s husband remained living in Uruguay, but would spend months at a time in Holland to be with his wife during her last two years.