Being a caregiver to a family member with Alzheimer's Disease is tiring, stressful and sad, and of course it affects the amount of time one can devote to fiction, blogging and other such work, but it's not something a person can turn away from. The elderly are vulnerable at the best of times, but when Alzheimer's is present they're that much more at risk.
Without dwelling on personal details, I feel it might be useful for me to share with you a few things I've learned about being a caregiver to a parent with Alzheimer's Disease. Some of you may be in the same position, others may ultimately find themselves there, and we need to know that we're not alone in this experience. Here are a few things I've learned.
One thing I've noticed is that people with no direct experience with the disease may find the behavior of an Alzheimer's patient amusing. It's not. We've had several home care workers and therapists come in to provide various services, and I can always tell the ones who've had little or no contact with Alzheimer's patients because they find the behavior funny. The ones who understand the disease know better. I've found oranges left in the microwave, dishes left in the sink to soak in a waste paper basket, and I've been introduced to strangers as my mother's husband rather than her son. Not of this is amusing. It's very sad, and it's hard not to be depressed by it. It takes an enormous effort to accept that it's happening without getting upset.
Once you reach a certain level of acceptance you learn how important it is to depersonalize certain behavior. Alzheimer's patients become quite paranoid at times. My parent was convinced that someone was coming into the apartment and stealing all the waste paper baskets (yes, like the one which ended up in the sink). Along with the paranoia comes anger. I've been the target of such flareups on several occasions. It is essential, absolutely essential, not to react to these emotional swings. I've learned that any negative emotion I let slip will be returned to me a hundred times greater.
Depersonalizing these things means accepting that the relationship between yourself and your parent has changed. They were always the one who knew better, who showed the leadership, who spoke first, who knew the answers to your questions. Now these things are no longer true. You are the one who must know better, show leadership, speak first and know all the answers. As a result, you must react differently to their anger, paranoia and confusion now than you did as a child. You must remain above it, understand it, and not take it personally.
Patience is the key, and the most important lesson I've learned. Alzheimer's ensures that the explanation you give today will have to be repeated tomorrow, and again the next day, and every day thereafter. There's absolutely no point in reminding them that you told them this yesterday. Treat the question, objection, challenge or confusion as though it were the very first time it had ever come up in conversation, because for them it is the first time. Every time. They don't understand your frustration or impatience, and they'll only react in kind, as I said before. Be patient.
Be patient, and be kind. Understand that they're living almost exclusively in the present. They want to eat sweets, watch something funny on television, go for a walk in the garden. Be kind and give them these moments. The rest of their time is spent in the distant past. My parent remembers nothing now of my childhood, nothing of having raised me, taught me, protected me. For them, it's all gone. They remember their own childhood and adolescence, and eventually that'll be gone as well. Sometimes they'll pretend to remember something if you bring it up in conversation, but it's easy to tell when they don't. Be kind; let them pretend. Tell the story anyway, and they'll enjoy it for the moment. Something to share. For the moment.
Last of all, and perhaps most important, it's very easy for the caregiver to feel guilty. About everything, really. Things that were never said between you before it was too late, not understanding what was happening when the disease first began to tighten its grip. And most importantly, it's easy to feel guilty about feeling tired and stressed and wanting it to be over. Being a caregiver is very, very hard. It's normal for us as family members, who are not trained to do this sort of thing for a living and feel all the emotional burden of the disease, to feel guilty when we want to take back a little of our own lives. Here in Ontario we have a very good support system that has gradually been ramping up to alleviate the burden my wife and I have been carrying. It's been very hard, though, to pass some of the responsibility over to someone else. It makes you feel guilty to have to rely on strangers for assistance. But that's what they're there for, that's what they do as professionals, and at some time it will be okay to release the guilt and let it all happen.
I'll get there eventually, I hope.