Taking care of one's elderly parents

Taking care of one's parents is one of the things that happen at the end of life. It's harder than childcare, because with children the trajectory is up, the future is hopeful and open. With elders, the end is sad and downwards in many ways. And eldercare is always more expensive than child care. Paying for wonderful, brilliant, enriching child care is justifiable based on that hopeful future. It is easy to argue about cutting corners for someone with Alzheimer's. Really it is. I've heard it. And sometimes, too, it squeezes, time money and energy,  because you have kids you are taking care of, too.

My good friends Melissa & Strange are coping with Strange Mom, and some of the issues that accrue at the end of life. It (as usual) is a good read here (and update here). They are at the intersection of elder stubbornness, ill health, distance and a medical system that is optimized for things that are not necessarily in the patient or family's best interest. My heart goes out to them. [and if she does poop, you just clean it up. may that be the worst that happens].

At best, Medicare is frustrating, at worst, it is a bureaucratic nightmare that works poorly, and somewhere in the middle it doesn't cover what is needed. No one has ever saved enough money for what they need at the end of life, because, no one ever thinks they are going to need it.

Here are things I know are true:

The folks in charge at the medical end may mean well, but I frequently wanted to scream at them. They speak a different language. When I would ask for clarification they would say the same thing, but maybe a little louder. No I'm not hard of hearing. Nor am I stupid. You are just speaking a different language, and I do not understand what you mean. I have (medical & logistic/medicare) knowledge, and that helps, a little, but not a lot. Then, I would think about friends who don't know the medical system, and realize their frustrations, anger and sense of futility was, is, and continues to be, far worse than mine.

The social workers may be saints on the inside, and most of them care, oh do they care. But, there are rules and regs and moving an elderly person across state lines is like an 80 year old woman with walker going deep to catch a line drive. Not a chance in hell. The rules, they say,  are only "to protect our patients". And yes, I am sure there are horror stories about greedy children trying to get money. But these are people who have little, if any, resources, and I'm only trying to figure out how to manage this. Please stop throwing up roadblocks.

And then there are the other family issues. Dr. Strange is an only child. While in some ways that is sad, in others, it can be a plus. a feature, not a bug. Even, a relief, when you talk to people who are struggling with their sibs. I have a friend, who's Mom was a bit behind mine. I included her story and a picture of her mom at the end of this post about taking care of the elderly. Her Mom died a few months ago, and a new hell has opened up. Her sister is fighting over the shreds of "the estate". My friend gave up her job, and took care of her mother for 5-10 years. Her sister is suing her for mis-use of the estate (ie, taking money for caring for her mom). There are lawyers, and any money there might have been will be gone.  My other friend from that post is still caring for her Mom. Her brother and sister, who live near by, come on Mother's day and Christmas and her birthday to see their Mom. My friend is there everyday, and dealing with the angry phase of Alzheimer's. Watching your parents age, watching them lose what made them the human beings you love. Watching them lose poetry and words and memory is excruciating. Coping with the anger and the history of issues that all children have with their parents is just one more problem. No one's childhood was perfect, and some much less so than others. And dementia only brings out the worst pains from the past. Not to mention that dealing with your sibs is just one way of ripping off that scab.

So you are an only child, and must do it alone. Although if you have a good partner, they are there, and they can support you. Or you have sibs, and they can't or won't support you, and it opens along all the fault lines of your childhood. There is never enough money. There is seldom any professional support (even when you are a health care professional and speak the language). Our parents struggle for their autonomy, even as they feel it slipping through their fingers.

And then its all gone, and you'd give anything for one more minute.

2 responses so far

  • […] of a thought before Strange Mom arrived that it would be a bit like caring for an infant, but as Potnia Theron wrote in her own post, it is nothing at all like caring for an infant. I’m grateful to Potnia for articulating that […]

  • Zuska says:

    Every word you wrote is so true it hurts. Hurts to read it and remember what it was like to be in the middle of all of it. I felt like it went on for decades; it was a barely a little over five years, with my mom (more years with in-laws). I miss her and her sister, my Aunt Betty, so very much. Not a week goes by that I don't think of a handful of questions I wish I'd asked or conversations I wish I'd had - years ago, when she was younger and memory was better - and more, the same regrets about my grandparents, who were all gone by the time I was 18. Too young & stupid to know they had anything to tell me.

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