Care for the Caretakers

I'm not Catholic, so all my lifetime's worth of sins are all bottled up in here.  If anyone were to hear my confession, they'd have to get comfy and cozy because they'd be in for a long listen. Sunday night would be on the list.

I've tread on this ground before, I realize. As a matter of fact, it was just over a year ago when I last did. I have an annual breakdown, I suppose. It brims to the top and bubbles over.  But bear with me because it's hard to be a caretaker. Harder still when you didn't want it or volunteer for it. And harder still when you've worked in that capacity for a quarter of a century. It's not burnout at that point; it's volcanic ash.  I had a few years of respite there, but my husband has not. After trying to care for our daughters and my mother, he barely had time to grieve before he was off to care for his brother, and now he has his mom.  And she's hard for all the reasons a 90-year-old person is hard: they're dying. It may be years before they do, but it's in progress. They know this, and they're scared. Growing up a pastor's daughter probably doesn't prevent you from wondering at the end if what you listened to your father preach all those years and you yourself believed all your life might, in fact, be smoke and mirrors. Life is what you know for sure exists. Faith must, well, be taken on faith. Plus, you're bored and lonely. Far from family, having outlived most friends, and too frail and ailing to go out any longer to do things. I think the last time we dared take her on an outing was last fall, and it didn't go all that well. So, in the evenings, she wants some time and attention. If you step back to think of everything I detailed above, it's a reasonable and understandable request, and compassionate people would grant it. But she doesn't ask like a lovely, caring mother.  She yelled it as a demand, and we both said no.  I begged off that I was busy. I was washing dishes, which was moderately accurate, but I could have set them aside. However, my resentment of having put up with this for six years bubbled more than the dish soap, and I just doubled down on my scrubbing.  My husband was just infuriated by how she yelled at both of us, demanding attention like a toddler (which really is more or less where she is mentally), and just met her angry request with an angry denial of it.

A family outing, which are harder and harder

That night, instead of sleeping, I sat pondering, regretting my actions. I can't control anyone else's, so he can atone alone—or not. And it is a two-way street, so I get it if he has no regrets. She's completely forgotten the word "please." About 90% of what she says is a complaint. And it's 100% delivered as a whine unless she's yelling, as she was that night and the next night and the one after that, leading me to believe this is how it will be moving forward. But that's old age for you.

Jan, my mom, and me in the 90's

This brings me to my point: everything I've ever said about aging pales compared to the fear of being "that person." The person whom the people who love you the most avoid being around and almost cringe when they have to. You have to remember I loved and was very close to my mother-in-law.  I've said this before, I think, but she was the very first person I told I was adopted the night I found out (because I couldn't get my daughter on the phone, but...). She planned my wedding. I wore her wedding dress, actually. She once confessed that I was hard to like (I can't disagree), but she took me in and treated me like a daughter despite that. All of that adds to the guilt of my situation.  But here I am, struggling to meet her bizarre, disruptive behavior and her constant demands with anything resembling compassion, and she was, for the bulk of my life, a gentle, caring person I loved deeply.  Who in the [bleep] will do anything remotely like this for me when I was never gentle and caring about anything not on four legs?

2008 maybe?

It terrifies me to be candid.  We're all part of the vast Baby Boomer generation, which the country knew was one day going to be the Geriatric Boomer generation and tax the healthcare system. I was struck by this conclusion in an article published by the National Library of Medicine, "...The real challenges of caring for the elderly in 2030 will involve: (1) making sure society develops payment and insurance systems for long-term care that work better than existing ones, (2) taking advantage of advances in medicine and behavioral health to keep the elderly as healthy and active as possible, (3) changing the way society organizes community services so that care is more accessible, and (4) altering the cultural view of aging to make sure all ages are integrated into the fabric of community life." Particularly points 3 and 4. 

But it was an article published by Vox that I think hits the spot where I'm afraid my family will live: "'We are in a crisis of care,' said Carlene Davis, co-founder of the nonprofit Sistahs Aging With Grace & Elegance (SAGE). It’s a crisis that American society, with no paid leave, a fragmented care system, and minimal public discussion around aging and disability, is woefully ill-equipped to handle.“We are in a crisis of care,” said Carlene Davis, co-founder of the nonprofit Sistahs Aging With Grace & Elegance (SAGE). It’s a crisis that American society, with no paid leave, a fragmented care system, and minimal public discussion around aging and disability, is woefully ill-equipped to handle."

As a society and in government, we must do better by our caretakers, both professional and non.  However, particularly the "nons" since they are the men and women who have never signed up for this and don't get a paycheck to do it.  They fell into it by the simple fact of being related to someone.  They have no training in what they're facing. They have very little support.  Sure, a caregiver support group meets at the local library in my township, but I can't go: I can't leave my MIL alone...and I work. But that's emotional support. I'm not aware of any training offered to teach us how to handle it when your mother can't remember your name or swears at you and tells you she hates you. Nor how to change an adult diaper or help with PT, or lift them into bed if need be.  Trust me, my MIL is small and frail but a full-on dead weight that can still be hard to lift so that neither one of us gets hurt.

Sure, you can hire that kind of help and expertise, but then you'll bankrupt yourself quickly. I recently demanded we bring help in.  My husband semi-took me seriously and did some research, but the cost became daunting. We drain ourselves now; what will we live on when we retire? And we're middle class. We're luckier than most. Reasonable care should be available for all. Because if it's not, we all will pay one way or another when all of us overwhelm the welfare system when we age.

Long story short, this problem is going to get bigger. It's too late for me.  But for my poor only child, and for all of you who have parents who aren't quite to the point my MIL is: press for better options for the caretakers before you are one. Please.