Lessons to Learn

I’ve contemplated writing this post for over a month. I didn’t want to write it because it was no one’s business but mine and my family’s, but isn’t everything I write? Then I didn’t want to write it because the rage I felt prevented me from coming up with any words at all. Just today I decided that yes, I would indeed write about this latest shit storm, if only to help someone else down the road.

Let me begin with saying that if you have Power of Attorney for a family member, even for a person with dementia, that power only goes so far. We live in a country where everyone has rights. This is a good thing. It is. But is that person with dementia able to make good decisions, particularly about their health? Maybe, maybe not. Is a 7 year-old able to make good decisions, particularly about their health? We’re dealing with something very similar here. Just because a person wants to do something and is able to verbalize their want, does not mean that they should be allowed to do said want. Do we let 7-year-olds drive because they want to? Nope. Do we let people with dementia go back to their home with no one capable enough to give them medicine or feed them or remind them to bathe or clean up after them? Apparently yes.

My mother’s “friend”, let’s call him Jack, as in Ass, goes to the residential care facility where my mother is living, and packs up her things. He is going to take her back to her home where she’s happiest. Because my mother has rights, resident rights, she can tell the facility that she’s leaving. I can do absolutely nothing. I try to call her and tell her not to do this. No answer. I call Jack and tell him to stop. He doesn’t answer. I call my sister and we rage but we are helpless. Then I leave nasty voicemail messages on Jack’s phone, ripping him a new one. I have no idea what I said. I just know I was furious and frustrated and couldn’t believe this was happening.

I talked to my mother over the next few days. She, of course, was happy as a pig in shit. And you know, it was nice having her happy, but I also knew she wasn’t safe. During one of these conversations, I could hear Jack in the background, mumbling and freaking about something, but didn’t know what at the time. Apparently Mom’s blood sugar was so high that he was trying to make her a doctor’s appointment. He eventually took her to the ER where they gave her insulin.

I sent Jack a text telling him to take my mother back to the facility or he would need to start taking care of my mother. I sent him a list of things that needed to be done, things I discovered she needed when I tried to care for her in my home. “I’m not a caregiver,” he replied. “I just want to hold my friend’s hand as we go through hell.”

Oh, for fuck’s sake, GROW UP! You better do more than hold her hand, you asshole!

Two days later, Jack calls me sobbing. He “overestimated” himself, he said. He couldn’t take care of my mother. He said more, but honestly I have no idea what he said. He was blubbering. He was hysterical. But, as I discovered when I went to Mom’s house, she was NOT going back to the facility. She refused. She wasn’t going anywhere.

And that’s where we still are.

So what does all of this mean? It means, that in order for my mother to be safe and in a place that I know will give her meds and feed her nutritious meals and be there to help her bathe and remind her to change clothes and provide things for her to do besides stare at the television, I must become her guardian. I must fill out applications for other facilities and make phone calls to Adult Protection Services (again) and make appointments to visit facilities and do more paperwork for financial assistance. I must go to court and officially become her parent.

And you know what?

I really don’t want to.

I’ve been dragging my feet with the court piece. I have essentially been my mother’s parent for a few years now–paying her bills, taking her to appointments, and while she lived with us, making sure she ate and giving her meds and cleaning up after her. But once she moved to the residential care facility, I didn’t have to do any of that. I knew she was safe. I knew she was being taken care of. Whenever I visited or called, she was doing well. She really liked a few residents, she occasionally partook in activities, she was ok. I knew she wanted to be home with her cat. I completely understood. But things weren’t good at her home. Things ARE NOT good at her home. So for two months, I didn’t have to be my mother’s parent. I got to be my son’s parent instead. And now that the tide has turned once again, I’m not ready for it. Well…no. It’s not that I’m not ready. I just don’t want it.

I’m angry. I did what I was supposed to do. I tried to help my mom by taking care of her, then when that wasn’t working, I found people to take care of her better than I could. Then this Jack goes and does what I suppose he thought was the right thing, but all it’s done is hurt everyone involved. I have never in my life, felt such rage. I had never fantasized about killing someone before, but Jack changed all of that.

I’m frustrated. The amount of paperwork I have to fill out seems to have doubled. I peck away at it occasionally, but I know the end result of all of this is not going to be enjoyable. Once I become my mother’s guardian, if she still refuses to leave her home, she’ll have to be physically removed. I don’t know what that will entail and I really, REALLY hope I don’t have to find out.  And through all of this, I really, really just want to talk to my mom. I’m trying to do what’s best for her. Is this it? I have no idea. It’s either safe or happy. It apparently cannot be both. At least not for her.

This is the reality of taking care of a parent. It’s fucking awful. Now, not everyone will have this kind of horrible story. Some will have parents who have already planned everything beforehand. Some will have parents that willing go to facilities (which my mother did, then changed her mind). And some of you, like me, may have a parent who has hooked up with an incredible loser that will destroy any good thing you’ve done for your parent.

If that latter example is you, then just know that you’re not alone. Know that others have traveled or are traveling the journey and although it’s worse than riding a crowded Greyhound bus cross-county with a backed up toilet, there is help. Not a lot of help, and the process is extremely slow, but eventually things will change. I can’t say for the better because I’m not on the other side yet. I’m hoping for better, especially for my mom. And if we get there, I’ll be sure to let you know.

alzsucks

 

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I tried…

…but did I try hard enough? Last night, as I sat with my mom, as we laughed and cried at “This is Us,” I rode an emotional roller coaster between guilt and relief at what today would bring.

This past week, Mom’s memory has been the best it’s been in over 2 months. Physically it hasn’t been great, but mentally things were better. Yet I know that it won’t always be that way. I know that a residential care facility and the folks that work there will care for her the way she should be. She won’t be alone for 6 hours a day like she has been while I’m at work. I know she’ll eat lunch and it will be good for her (and hopefully yummy) and I won’t have to inspect the trash or fridge to see if she ate what I put out for her or if she ate a half loaf of bread instead.

It also means I won’t have to change her sheets when she had an accident. I won’t have to clean the bathroom floor or the toilet or the bathroom counter nearly every single day like I’ve had to for two months. I won’t have to sneak into her room and steal her dirty clothes so I can clean them. Or ask her multiple times to please change her clothes or to take a shower.

But it also means she won’t be here as we eat our dinner around the table and talk about our day. Or laugh at silly things we find on television. Or fold all of our clean laundry (this was one of her favorite things to do).

For the past few weeks, various medical professionals as well as my friends and family have all said, “It’s ok. You’re doing the right thing for both your mom AND for you.” But this afternoon it did not feel like that at all.

My sister and I drove my mom to her new home, and it really is a lovely place. It’s not assisted living or a nursing home, but a residential care facility which is kind of in-between the two. It’s a very homey place, doesn’t smell like a nursing home or a hospital. Mom’s roommate is fantastic and she loves to watch tv as much as Mom does.

But as soon as we got there, Mom was angry and upset. After we sat in her room for a minute, I had to get up and leave because I was starting to cry and I wanted to find the director. Mom argued with my sister about why she had to be there, saying that yes she could take care of herself, but thankfully, my wise sister, distracted Mom with photos and questions about our grandfather. By the time I got back, Mom was smiling and was willing to let me put her clothes in the dresser. Later she went to lunch in the dining room with everyone else (and my sister) while I filled out paperwork.

We visited for a while longer and I encouraged Mom to walk about in the rest of the building, check out the two large areas to sit and read in or watch television. She sat in her recliner before we left and settled in to watch tv with her roommate. Once my sister and I got to the car, I sobbed. It felt truly awful to leave Mom. I felt like I abandoned her and let her down. I’ve felt guilty just thinking about when this day would come, and now that it’s here, that guilt sits heavy in my stomach, my chest and my head.

guilt-and-grief

I KNOW that Mom needed more care than I could give her. I KNOW that my son needs me and has needed me the past few months when I put my mother’s needs before his. I KNOW that my mental health needed this to happen.

So why does it feel wrong? Why does my stomach still hurt and my chest feel tight? Why do I feel so guilty when it’s the right thing to do?