“It’s like living with a child.” It’s a common perception when discussion centers around living with someone with Alzheimer’s, and a statement I’ve heard often.
Children challenge parents to find ways to communicate with them that will encourage them to develop life skills, to advise them against things that will harm them, and to explore. We try to teach them to be aware of their surroundings, to honor the sensibilities of others, to follow the order of law that governs our society and to question those things that do not fit with a just society. In other words, we try to raise self-confident, skilled, empathic, honorable, engaged citizens. It’s a tall order and it takes every skill parents possess, plus the skills of the dozens of other ‘teachers’ children will be influenced by during their growing up years.
The key here is that, unless they are developmentally challenged, children develop on a continuum. They start out requiring total care and supervision. But as they grow, they learn. They get better at things, they become more independent. They learn to think for themselves. And the circle of those who influence their growth and learning widens as they grow.
Some might think Alzheimer’s works in reverse. That as the patient’s brain slowly dies (Alzheimer’s is Brain Failure) they revert back to a child-like state of requiring supervision, and then a baby-like state of requiring total care and supervision. But Alzheimer’s patients are neither small children, or babies. They are adults, who have lived fully developed lives. They have opinions, and their own ways of doing things. They cannot be solaced by being picked up and carried, or made laugh by blowing a raspberry on their bellies.
If one instructs a child on how to do something, eventually they will be able to perform that task without help. They may even get better at doing a task than the adult who is teaching them is. They store knowledge and can retrieve it when they need it. They learn how to figure things out, how to plan, how to imagine possibilities and work toward a result by taking those possibilities into account.
Eventually, Alzheimer’s patients lose all of that. Eventually, they will not be able to retrieve the vast knowledge they’ve stored because, like a fire that wipes out a lifetime’s belongings, the storage rooms are destroyed. Worse than losing the stored knowledge is that, unlike lost belongings, it cannot be replaced, because the Alzheimer’s patient won’t be able to figure things out, plan or imagine possibilities. So no matter how carefully one tries to explain a task to them, or how many times the instructions are repeated, they will not be able to ‘relearn’ how to perform that task. And that’s the main way an adult Alzheimer’s patient is different from a child.
The deterioration of a patient’s abilities is often very hard for a caregiver to understand, and to accept.
I sometimes find myself repeating instructions to Bill over and over with increasing volume. It might be instructions regarding a task he was able to do just last month, or even two days ago. Meantime, my frustration (and his) has risen, and along with the frustration the harmful ‘juices’ that fuel things like acid indigestion and stress. So I need to keep reminding myself, it’s not his fault. He has no control over what’s happening to him. And to accept that things have changed again. But I also need to take care of myself.
Caregivers need to understand frustration is part of the package, and there will be times we lose patience with the whole thing. We need to allow ourselves to vent and to cry. But we need to find ways to do this that don’t hurt the person we’re caring for, or us. In the midst of a developing stressful situation, taking deep breaths when the volume is rising, stepping away to collect my thoughts, are things that help me.
Later, it’s important that if I find myself feeling resentful, overly frustrated, or depressed, I take time to assess how things have changed, and how I can deal with the changes. Maybe I need to hire someone to do something I can’t, or don’t want to, do myself. Maybe I need to find new ways for Bill and I to have a good time and relieve some of the boredom or sense of restriction that can easily set in. Maybe I need to find a way to have more time for myself. And when I run out of ideas, maybe I need to talk to someone else, who might have a fresh perspective on how I can make things work.