Lots to it. Medication issues top the list. Lots of red tape if there are financial or health insurance issues. Probably the hardest is being the person who personifies a loved one’s diminished capacity or lack of freedom. That would be me.
But I’m trying to keep my dad out of assisted living which I’m pretty sure he’d like much less and in order to that, I have to watch carefully that he doesn’t pass out (and have convulsions) from orthostatic blood pressure drops or from the balance and movement issues that Parkinson’s disease causes, and if I don’t keep my dad from falling, all of my efforts could be for naught since his size at (220 lbs. now) vs. mine (118) pose problems already when he falls. Parkinson’s destroys muscle strength so he doesn’t have any strength to help me get him off the floor as it is. Should he end up in a wheel chair or worse, I might not be able to handle this at all.
I love my dad and other than pushing him to be careful in the sun and/or take precautions at times to keep from falling, (when I can get insistent if I can see he is looking funny or light headed), I am respectful of him. I’m respectful of him at all other times because he’s my father and because I love him. But I have “friends” telling me I’m “overbearing,” there is such a thing as “quality” of life and that I don’t want to “regret” things once my father dies. I assume this means I should let him sleep in the sun which always results in his getting dehydrated and passing out as he heads in (Parkinson’s people’s bodies do not regulate temperature properly), let him remove his oxygen when showering and moving around –even though it drops to about 82 when he does that, and basically just saying nothing when I can clearly see disaster looming. Dad has fallen dozens of times here now.
Dad will not comply with most of these suggestions unless I get pretty pushy. His short term memory is compromised and he doesn’t recall how many times he’s fallen and when he wakes up, doesn’t think it’s that big a deal. Doesn’t know he’s had convulsions. So he just doesn’t have good judgment about it. And other people have not been privy to all this hilarity.
But I am fairly certain I will never regret taking minimum measures to prevent disaster (my dad isn’t 100% competent, either, as I say–88 years old with mild cognitive impairment). But if there isn’t enough stress and challenge to taking on something like this, I have to be judged by people because I’m apparently not doing it all well enough. Of course, this friend has never done anything like what I’m doing. He does say it’s great I’m doing it, but apparently I don’t do it well enough since he repeatedly brings up that he doesn’t “want me to regret” things.
I only know one person in my lifetime who has taken care of a parent rather than putting them in assisted living (my lovely friend Karen), so not too many people have a clue about it.
Today, Dad’s doctor asked him if he was living alone still (of course I’ve been with him at his doctor appointments for a year or two) and Dad told him no, I was living there. He asked Dad if I was cramping his style and he said lightly that we’d taken away his car and driving privileges (actually my brother did that, though it was probably a good decision, and I did buy him a road-ready golf cart he can use in good weather), and Dad went on to say that I was cramping his style “a little.” Interestingly, Dr. Entz asked me if Dad was cramping MY style and I said, “a little” with a smile. And he said, “Ok, good, so it goes both ways. It’s equal.” I was pretty sure he was making a point there since it was a given I was cramping Dad’s style.
But actually, I’m sure I’m cramping Dad’s style more than “a little,” and he’s sure cramping mine more than “a little” since I have to care for someone full time and can barely fit in exercise let along my writing. I had to give up teaching a good while ago. But it is what it is. I still consider taking care of Dad a “privilege” — (something my friend Karen said about her mother) — he took care of me for many years and I do not want my dad in some joint. But it’s difficult even when you want to do it. I had planned on it being my mother who loved to be waited on and would have been cooperative. No such luck.
Dad and I live together again, bottom line. What that means is that we are human and we have to work out getting along together. Something we need to do without the peanut gallery. And, of course, it is not going to go perfect every moment. Dad is used to things being all about him, tends to be a chauvinist, but of course this is brutal on him, nobody knows that better than I do. His existence is not for the faint of heart. But I have to keep him from a concussion or a broken hip which then will change his life in a really big way.
My quality of life has to matter too–also bottom line.
One more bottom line: I’m the one doing this. Nobody else knows what it is like and I have to do what I think is right for us both. And I will.
Anyone else care-giving? Love to hear from you.
Menu: I had some rotisserie chicken today and made Dad a Monte Cristo Sandwich–Martha Stewart style. We’d never had one, so I had a bite. Pretty interesting with the smoked turkey and honey ham, Swiss cheese, Dijon mustard. Then you dunk it in egg like french toast, grill it, and dust it with powdered sugar. They had garden tomatoes along with. Dad and Josh loved it and on a cheat day, I’ll be having one. Maybe over the holidays.