Imagine this:
You wake up in the morning and initially don’t recognize where you are though your surroundings feel familiar. For instance: you can walk straight to the bathroom, and you can find your way to the kitchen, but you’re not sure you know how. It’s probably muscle memory, but that’s not a concept your mind will offer up to you.
You see the person next to you and he, too, is familiar but his precise relationship to you is just off the tip of your brain right now. You do have a relationship with him, and a close one; you feel that you do.
This person lives with you and helps you do the normal, daily things – getting dressed, eating breakfast – though why you would need help with them is anyone’s guess; you don’t realize that if he doesn’t help you, these things don’t get done.
Throughout the day, things are more and less familiar to you at any given time, and sometimes you are convinced you are somewhere you’re not and you can’t bring your surroundings in line with what your mind tells you they should be. Or someone drops by and you know their name but you don’t know how you know it; you just do. But you don’t want to ask who they are exactly, or who they are to you because you don’t want to let on you don’t know. It upsets you, because you feel like you’re being gaslighted. Or you are being asked or told to do something and it infuriates you because you are not a child and you don’t want to be told what to do. It’s disrespectful and you’re a damn adult!
Now you’re angry, because you’re frightened and confused, and you just want out. You want to go back to a place where you know where you are, and where you know who other people are, and where you know who you are, and where you know you can trust your own mind.
Eventually, the anger burns itself out, and when you’ve calmed down you feel tired and a little weak, and you’re happy that your person – who you sometimes know is your husband and who is sometimes just the man who helps you and takes care of you – is here with you. You’re safe here in this house in which you intuitively know your way around.
This is how I imagine my mother feels every day. My mother has Alzheimer’s and she’s headed towards the late stage of this (pardon my French) motherfucker of a disease. She is still able to live at home, in the house she and my father bought over 40 years ago.
My father takes care of her and he does it well. He makes sure she still sees people, that she gets out, that she gets the diversion and stimulation she needs at a daytime activity centre that she really enjoys going to. He makes sure she eats, even though she does that less and less. That’s partly diminished hunger, and partly not always being able to swallow food after chewing, which also explains her preference for soup over all other things. And she has a sweet tooth – something she didn’t used to have – so cookies she will eat.
Having Alzheimer’s must be sheer hell, especially for a woman who has always been extremely intellectually inclined. Alzheimer’s is hell for all its sufferers because everyone needs the certainty of knowing where they are and who the people around them are. How do you know you’re home? How do you know you can trust someone if you can’t remember them, or know how you feel about them, or what your history with them is? What’s even worse is that you can’t fill in what you don’t know because your brain doesn’t let you. And all the while, you want to know, you feel like you should know all these things, these basic things.
Alzheimer’s is hard on caregivers, too, and my dad is no exception: he has to watch her decline, deal with her moods, has constant worry, is on call 24 hours a day, has an increased workload in the house, and has to guard against my mom’s impulses (which she can’t do anything about).
Caregiving is so severely underrated it is hard to even put into words, but I can say there is no one I admire more than my dad at this point.
When my mother first got diagnosed, I started reading up on Alzheimer’s like my life depended on it. I read about beta-amyloids and Aβ plaques, I read about medicines with the potential to slow its progress (there aren’t any, and apparently we’ve been barking up the wrong tree for decades), I read about the stages of Alzheimer’s, I read about the behavioral shifts and diminished capacity as the disease progresses, I read up on how I could explain it to my children. I went to information meetings to get practical advice: who to talk to about care at home, about daytime activity centers, how to approach a case manager who can help with paperwork and getting the necessary Long Term Care Act (Wet Langdurige Zorg) statements required for admission to care facilities when the time comes, how long, how very long those waiting lists are and how you should register for a care home in plenty of time.
But what I couldn’t read up on was how emotionally hard it is to watch my mother go through this illness. With everything I’ve learned about this disease, the sheer brute impact of it is something I couldn’t prepare for. There are trainings to help you understand the patient’s paranoia, there are information sessions to prepare you for the signs and symptoms sufferers can have – hallucinations, wandering, insomnia, incontinence, mood swings – but there is nothing to really, truly prepare you for how devastating it feels to watch it happen to someone you love and know that there is nothing you can do to stop or reverse it. To know that my mom isn’t my mom anymore and Alzheimer’s is stripping her away piece by piece.
The only things I can do now are love, support and help care for my mother, and love and support my father while he is by her side as she goes through this. I know that there is nothing more. But it doesn’t make it any easier.
Alzheimer resources in the Netherlands:
Claudette Kulkarni 