Dear Readers,
This will not be the bubbliest, happiest, most whimsical chapter I have written about caregiving, but it is definitely food for thought!
Today I first want to talk about dementia and what I have learned about it — and about myself.
Rawbaw has short-term memory loss. Some days, every few minutes, she asks what day it is. I tell her. Then, about the fifth or sixth time she asks in the same quarter hour, I get a little testy. Then I see her looking at me, and her expression tells me she knows I am annoyed with her. That is awful. I feel bad, but it's too late: she is already giving me the look that says she knows she is bugging me. Then I recognize, at least for the moment, that I am punishing her for being demented — and any idiot knows she did not ask to be. It just happened. That puts me behind the eight ball, and I vow silently to do better.
I think I am doing better now. She is blood kin, and I certainly owe her that.
I have very recently managed to learn a couple of tricks related to dementia that allow me to deal with it more logically. For one thing, I simply accept the repeating of the same question as part of dementia and not a sinister plot to drive me nuts. Then I thank God that my brain is still working well enough to let me continue to be of service to a family member!
Actually, most of us have a tiny touch of dementia as we get older, but the manifestations of it are known as “senior moments,” and I think I am getting way more than my share! I wish I had a nickel for every time I walked into a room to do or get something lately and had to leave the room to remember what it was ... or every time I was about to drive off somewhere in my car and had to return to the house to grab my cell phone ... or every time I “lost” my car keys, then combed the house for them and found them where I'd never left them before, in some really dumb place (like inside the fridge) (where at least they'd be found by mealtime).
I don't have any statistics on the average age of a caregiver, but I am going to guess that many people who have accepted this role are (like me) in the twilight of their lives (what I call “on final approach”) and therefore not quite the mental giants they used to be. (How was THAT for diplomacy?)
However, a “senior moment” now and then certainly does not disqualify anyone for an important service commitment to a loved one. If you have a senior moment, you can usually laugh it off, because most of them are not fatal. Also, if your patient is as forgetful as you are, you can compete for “best senior moment of the day” (provided one of you can remember it!).
We are talking old age here, folks. It does put limits on your mind and body, but if you focus not on what you can no longer do but on what you can still do quite well, you can still be one of the world's greatest caregivers.
I said earlier in this blog that caregivers should not try to do it all, and that goes double for old ones (like me). It is especially important that you accept help with your caregiving assignment, especially the physical stuff. You won't be of much use to your patient if you throw your back out, give yourself a hernia, or aggravate the one you've already got.
Be careful, and be gracious when some (younger) Good Samaritan wants to lighten your caregiving load.
I have a much younger neighbor in Michigan who recognized my shortcomings as a senior many years ago and has been mowing my front lawn ever since. I drew the line on my back yard, but, gee, it's nice to hear his mower out front.
Maybe the best advice I can give you as a caregiver is this: don't beat yourself up. Its not your fault you were thrust into a complicated situation for which you may have had no experience to guide you. I know that was the case for me. I never even took a first-aid course! Who knew that I would now be managing medicines, giving injections and changing bandages?
The rule of thumb? Do the best you can, knowing you're on a pretty steep learning curve, and knowing you will make mistakes. I made one just yesterday morning. Forgot to put a new nitroglycerin patch on Rawbaw. But I figured out that we're okay as long as she gets to wear one for 12 hours, then go “patchless” for 12 hours. Okay, dumb old me, I had missed the morning routine. So, I put a new patch on her at bedtime, and it comes off this a.m. when she stirs. Sometimes I surprise myself with my ingenuity. (Right!)
As you struggle with similar issues, remember that you are not alone. Never forget that the medical community is just a phone call away. I can dial “Nurse Direct” 24/7 at the clinic and hospital here in Appleton, Wisc., and I will always be connected with someone who knows a lot more than I ever will about medical matters. And of course, if this were a cancer case, I'd be calling ICAN first.
Well, we've covered a lot of disturbing stuff today — dementia, illness in general, senior moments, old age ... we may as well stay disturbed for a few more paragraphs and muse briefly about death. If you're game, so am I!
In the first place, and possibly to brighten things up a bit, I will note that dying is every bit as much a part of life as being born — it just happens to be the last thing we do as human beings. We all cross over. To exactly what, I cannot say. Your take on that will depend on your own religious upbringing and/or whatever religious epiphanies you may have had since.
Somewhere in this rambling blog I have told you that I was raised Catholic. Pa was a “C & E Catholic” (meaning he went to Mass on Christmas and Easter). Ma was a Northern Baptist who signed papers to raise the children (all seven of us) Catholic. She didn't like it, but she did it, because she loved Pa, and love is a powerful force.
Ma did wax critical about Catholicism when she thought each child was old enough to handle it (around high-school age, as I recall). Anyway, the point here is that I am a theological mess I mean mixture. I believe that God, Who created the universe, has a plan that I, a mere mortal who had absolutely zip to do with the creation of the universe, am obviously too simple to understand, but that doesn't bother me one iota. It's like God is a mighty river, and I am on an inner tube in the middle of the current, going with the flow. I feel I am in Good Hands. (Lynne, my editor, will probably lower-case “good hands,” but that's okay. I like to keep her on her toes.)
May we perhaps all share our impressions of the afterlife after we get there?
More pressing right now is how we should deal with the life we're in!
It helps if you believe (or, better yet, even think you know) that God can be asked for the courage, understanding, and patience you will need to be a good caregiver. Mind you, I'm not saying that atheists and agnostics don't make good caregivers, because I've seen too many examples of the power of pure human compassion for one's fellow beings. But speaking just for myself, I have found it's a lot easier just to humble myself and ask for divine favors. (Sometimes I don't recognize right away that they've been granted, but that's another blog!)
I would like to repeat my counsel, “Don't beat yourself up,” this time not related to caregiving but as the advice applies to the loss of a loved one. If you were to lose someone to cancer (or any major illness), you might start blaming yourself for not being attentive enough or smart enough or whatever. I beat myself up pretty bad when my wife of 49 years succumbed to small-cell lung cancer last year, even though I was told by medical professionals and patient advocates alike that I had done everything I could. I think I wanted that victory so badly that I needed someone to blame when I didn't get it. So, I blamed the nearest person. Myself!
Don't do that. It hurts bad enough when people you love drop out of your life. Don't add more hurt. Focus on what you had, find warmth in all the memories — and start believing that you will catch up with the people you miss the most. That's what I'll be doing until I'm missed, myself!
—Michael E. Hearons
