We were the support people for Hardi's mother when she was faced with becoming the primary caregiver for Hardi's dad, after a series of strokes and through a number of ongoing medical crises including heart attacks and a fall leading to a broken hip. The broken hip ended his homecare option because he'd declined the physical therapy after the stroke, and he could not rehab the hip after it broke.
We also pastor elders going through this as well as their adult children and grandchildren.
And, I "sit with" a dear friend in his late 80's, post-stroke, so his wife remembers to get out. We have a grand time; as the wife's own mental status deteriorates with Alzheimers, we're building me into their family network and their assisted-living regime. Right now, in addition to providing loving and challenging companionship, I'm the stroke-translator and the fixer of puzzling problems. :~)
So these are the xperiences that form the background of the following my reflections.... and I realize that the community we pastor in now, where people are tough and live a long, long time, has taught us whjat we moghjt never have learend had we stayed in suburbia. I've paid careful attention to how people here care for one another through all of life's passages..... we're surrounded by wise examples.
The painful fact that is inescapable is that the tenacity to want to stay at home far outstrips nearly all disabled elders' ability to actually manage the reality of doing it. It is very, very hard for all concerned to sort out the difference between an elder expressing sorrow and anger at life itself's hard turns, from their actual ability and desire to live at home.
Another painful fact is that in our modern societies, we lack good solutions to this part of life. It's a no-win situation for all involved, and it sucks. It REALLY sucks, bigtime, and there isn't any way around that.
The best that can usually be accomplished is to put the time and energy that family and friends WOULD have put into helping with home care, into supportive friendship after independence is no longer an option-- to avoid being the actual care-GIVER and become the CARER.
There's no avoiding how painful it is to have to hear the complaints and blame about the decisions you or others have made in their behalf, as the elder seeks to make sense of whatever new realities are necessary... but it IS a normal part of life as we live it in our present culture, and we each bear that burden of caring for elders, in our turn.
So what is left, in the midst of these really sh*tty realities, is to make the best decisions you can with the most love and awareness of every aspect of it, that you can muster-- to face that head-on and do what you can, with what you have to work with-- and to keep loving the dickens out of these dear, burnished souls, as they are, day by day. To love them not for who they have been and wish they still were, but to cherish WITH THEM their memories of those earlier days they hoped would go on much longer, and to love them as they now are. They feel so unlovable-- they feel so "less than" they want to be. But if you just love'em, that helps. Not as much as we would all like-- we'd all like to make everything all better, and we can't.
It's hard to strike a balance but you must: you must keep to your own existing commitments and take care of yourself, in order to have anything to give either as caregiver or as visiting loved one. No one who has ever been told this can hear it, at first... but you will hear the same wise guidnace from people who have been through it and from professionals invovled with you now. But the situation will teach it to you....
You learn, or you die by slow degrees, to spend the time with your elder that you can-- and leave promptly and cheerfully with no apology. You learn to hug them when they are railing at you most hurtfully. You learn to individualize your care for them to the person they are, and the needs they have.
One thing many people fail to grasp is how much mental improvement occurs when there is mental stimulation. Old photos are the BEST. Making easy and brief but meaningful and increaingly complex activities part of every interaction helps you and your loved elder stay as sharp as they can be, and more aware of and appreciative of the help they now need.
Something to keep in mind through this is that our elders have gone before us to play this role, in their turn, for their parents and their just-older peers. They just need a lot of patience as they make the transition from helper to the helped-- it's a bitter pill to swallow.
And we'll have our turn to be helped, eventually, too. It all goes around and around-- it's life.