Aging: A story and a request

As some of you know, my mother lives with dementia. And when I say “my mother lives with dementia,” I mean, “My entire family and social networks live with my mother’s dementia.” This stuff affects everything.

My mom’s story is by no means unique. In fact, the more people I meet of a certain age (mine), the more I am astounded to learn just how widespread this disease is. For Mom, it started in earnest right around the time that Covid shut the world down.

Prior to the pandemic, my mom … I’m just gonna call her Geri, for your sake. Sometimes I’ll call her Mom. Anyway, prior to the pandemic, Geri was what you might call an “active Senior.” She retired from the insurance biz years ago, but wasn’t really satisfied just sitting around, so she got a job at the same place I worked: Henry Ford Museum. For Social Security reasons, she couldn’t work every day, so 2-3 days a week she had that job, which put her face-to-face with the visiting public. Then in the evenings, she and Bill (that’s my step-dad, whom I’ve know since I was 9. Great guy.) would go together to the local American Legion post. That’s where most of their friends were. Some nights they’d go to the Democratic Club in the next town over, but regardless of the venue, the two of them hung out together with people, and Geri kept social through her work.

And then came Covid. Suddenly, there was no more museum, no more Legion. Geri and Bill devolved into sitting around watching the TV too loudly. I mean, years of working in a factory had done a number on Bill’s hearing, but he had also developed a degenerative disease that prevented him from feeling with his fingers well enough to put in his not-inexpensive hearing aids. So they watched stupid television and began wasting away. Not only were they physically deteriorating, but also their minds started doing strange things.

Long story short, Mom has dementia. Pretty bad. She’s always been the kind of person to tell the same story several times back to back, just because she was uncomfortable with silence, but now things started getting bad. Like, “asking the same question about what the kids want for Christmas 5 times in as many minutes” bad. And that turned into “being confused about what day it was” bad. And that further deteriorated into “not having taken a shower in over a week” kind of bad.

Things have actually gotten much worse since this whole thing started. The “funny” thing that happened today is, as I was having a long conversation with Mom on the phone – by the way, she is convinced these last two days that I am either in town with her and so she’s asking me why I’m staying at a hotel instead of at her place, or that I’m driving home, wherever she thinks home is for me now. She seems to forget most days that I don’t live in Oklahoma anymore – we were talking about skilled nursing facilities, convalescent homes, that kind of things, and she reminds me that she worked at one of those for many years since before I was born. And she goes, “And some of those old people in those places are MEAN!”

This is “funny” in an ironic sort of way, because Geri has become at times in the course of this disease one of the meanest, cruelest, most heartless people I’ve ever met. She flings F-bombs that would make Richard Pryor blush. She calls all of us who are left every name in the book except “child of God.” She even told my niece, her grand daughter, whom she essentially raised because my sister was so messed up on Depression and every kind of narcotic imaginable, that she wished that it was her, my niece, who had died back in 2008 instead of my sister. Mean. Viscious. A real Bitch.

This is not my mom. This is NOT who Geri is. But it’s who she becomes, thanks to this disease. My mom? She’s a fighter. A warrior. A survivor. She survived her first husband Dick and my dad John, both of whom were schizophrenic alcoholics, both of whom died by suicide. And now it looks like she’ll probably survive Bill, whom she had to call 911 for this past Monday, because it appeared he was having a heart attack. (It wasn’t a heart attack. Might have been a stroke. May have been a massive seizure. We’re still waiting on test results.) Things don’t look good for him, I’m sorry to say. On the other hand, this is the same man who, when Dr. Jack Kevorkian was in the news a lot in the 1980s, wanted to have the Suicide Doc on his speed dial because he never wanted “to get that way.” It’s also the same man who spends every day talking about how much he hates living in the body he inhabits, because he’s in constant pain and has been for a number of years.

But the point was, Geri’s a survivor. That’s not a compliment. It just means that she will do whatever she has to do, say whatever she has to say in order to maintain what it is that she thinks she needs. Healthy or not. More often than not these days, it’s anything but healthy.

Last time I went up to see Mom was in November of 2021. I had been up in the spring as well, because we thought she might be dying. She had dropped down to 80 lbs. and looked downright skeletal, but a few weeks in rehab got her back up to a reasonable weight. The only problem was the dementia. I may have made things worse by taking her to Frankenmuth, MI for lunch. That’s one of the places she always loved going when I was a kid, and I think she was happy to go again with me, except that we got separated in a gift shop and she got terribly confused. The whole thing had wiped her out, and she slept most of the car ride home.

Anyway, in November of 21 I had gone back up because her dementia had gotten quite bad and even she had noticed. I was planning on getting her to sign Power of Attorney papers. As much as she loves my niece, Mom knew that Lindsey would never be able to make difficult life/death situations on her behalf, so she had wanted me to take charge of that. Well, Covid was still raging, so I couldn’t get the paperwork together and get her to a Notary to make everything official. We had tried doing some teleconference things, but all I had was my cell phone and I wasn’t able to upload things properly. Needless to say, it all fell through. And then we got in a fight.

We got in a fight over her dog, Buddy. Mom had told me numerous times over this trip and the previous one that she wishes she and Bill could move into an apartment like the one we lived in when I was a kid. If it was a place with nursing care, that would be fine. She’d just have to be able to bring Buddy. Did I mention that Buddy is a 100+ lb Boxer? They haven’t invented the assisted living unit in the world that would accept a Buddy. When we suggested that my niece could keep Buddy and bring him by every day or two for extended visits, Bitch Geri came out. It was like Jeckyll & Hyde, if Hyde were a foul-mouthed old lady.

That fight pretty much ended things for me. I drove home without really even saying goodbye. It was a bad trip. And we were estranged for a long time because of it. But I had washed my hands of the situation, primarily because I wasn’t living there near her. Lindsey and my step-brother were. They were the two who went by multiple times a day to make sure people had eaten and had taken their meds. They did grocery shopping and errand running and bill paying. I was just in town for a week to try and make magic happen, because I was Geri’s baby and thought we had a special bond. Well, we did. But this wasn’t Geri. She had gone away, leaving her body behind to be inhabited by a demon from the deepest pit of hell. I had failed. The trip was a catastrophe.

More recently, we’ve been talking on the phone more. Some days the tone is quite pleasant. “What do the kids want for” whatever the next holiday was coming up? Not that she would remember to get it, but it gave us a chance to talk about the kids and what they’re into. Other days it was more about “you kids don’t care what WE want! You want to do what YOU want! We’re just an INCONVENIENCE for you! You want to take my dog away. Well, fuck all of you! You can all just fuck right off!” Of course, if you reminded her about this, she would suddenly become genteel. “WHAT?? I would NEVER use that kind of language!” OK, Ma. I think you taught Lenny Bruce how to swear, but of course you would never use language like that.

Well, things are even worse now because of the situation with Bill. He’s supposed to get out of the hospital tomorrow, but he simply can’t go back home. Depending on which of the dozen or so conversations you have with Geri on a given day this week, she will either deny that until the cows come home or she’ll admit that he’s bad off and she can’t possibly take care of him. But she won’t go to a nursing home. She’ll be damned before that happens. And she won’t even go to scheduled doctor appointments now, because deep down she knows she can’t hang any more, and she knows that any doc visit might result in her declaration of incompetency.

She’s not wrong about that. That’s what needs to happen. Since she won’t willingly go to a care facility, we’re going to have to force her to go. That means getting legal guardianship. It also means getting conservatorship. Neither of those things is easy and both of them take time and presence. Those are two resources I don’t have at my disposal. It may require getting an attorney involved. I understand that, if I get an attorney, she is also entitled to one, and one will be appointed if she can’t afford it on her own (she can’t). Part of the process involves the appointment of a Guardian Ad Litum, who will be the Court’s independent eyes and ears, who will very clearly see, if they spend any time at all with Mom, that she needs care that nobody at home can provide. But her attorney will fight guardianship if it means she has to give up her dog and go into a home. So that will be expensive and bitter, even if completely uncalled for.

Even if Mom doesn’t contest guardianship, I’ll still have to get paperwork filed. I’m entitled to do that on my own. But I can’t do any advance work for it because I don’t have that Power of Attorney, and absent the PoA, HiPAA declares that I can’t get access to any of her doctors’ diagnoses. It’s a catch 22.

Look. There’s lots more legalese involved here that I don’t feel like rehearsing again, because it makes me want to vomit. The long and short of it is, if we’re lucky enough, we’re all going to get old. And we’re all going to die. If we’re SUPER lucky, we will die suddenly. Quietly, perhaps. But if not, we will get really sick first. We may even lose our minds, rapidly or slowly. And we won’t be competent to make good decisions for ourselves, but depending on the work we do when we’re still of sound mind and body, we might save our loved ones a lot of stomach aches, expensive legal fees, and years of psychotherapy.

So, I’ve given you the story. It’s not a pretty one, but it’s not uncommon. In fact, it seems to be getting more common by the day. So with the ugly story out of the way, here comes the request: Get a will. Assign your Power of Attorney. Put together an Advance Directive to take the fighting and the guess work out of life decisions that your loved ones will have to make on your behalf when you’re beyond having a reasonable say. Do it. Please.

And if you’re a church person, talk to your pastor/priest/witch doctor about your funeral arrangements. Is it a maudlin thing to do? No, I don’t think so. Pastors, priests, and witch doctors are intimately acquainted with death. YOU may feel a little weird about it, but I can assure you that your spiritual guide will not. They will more likely feel relieved to get the inevitable out in the open, and in the long run, it will make your transition that much less traumatic for the ones who will care for you when the time comes. It is SO helpful for a grieving adult child to know that Mom loved John 11 and wants “A Mighty Fortress” played at her funeral, and that Grandpa wants a polka version of “My Way” at his wake with the lyrics to a love song by Johnny Cash translated into Hindi as the 2nd reading at his Celebration of Life. Have these conversations with the people who need to know. Get it down on paper in a place where somebody knows to look for it. Please. For the love of all that is good and holy, don’t put this off.

Thank you.

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