Not Guilty

As we left Mom on Sunday, I felt terrible. We had taken her out for a nice lunch, and she practically begged me to move her back to the last place. “Of course they all love me here. I’m the only normal one in the place.”

It was a hot, muggy day and I was grateful for the air conditioning in the restaurant, even in my sleeveless summer dress. Mom was freezing in her long sleeved blouse and denim jacket. She had done up her hair. She looked nice. I was buying into the illusion of her “normalcy.” I had a tough time eating my meal, good as it was.

Bob chatted amiably with Mom, telling her about our travels, fun with the nieces, sailing on our boat, happenings with his friends, coworkers and band mates. Mom tried to respond appropriately and did pretty well.

I had Mom’s leftovers and mine packed up. The portions were huge, and the food was delicious and fresh, so I felt certain that she’d get several good meals out of those.

We drove around and showed Mom the area she was living in. She was impressed with the beauty of the surrounds. But she wasn’t looking forward to going back to the residence.

Upon our return, I handed the boxes of food to one of the caregivers and she assured me they’d warm those for Mom whenever she wanted. It was 4:30 and they were already eating dinner. I couldn’t quite make out what they were eating, but Mom insisted they were getting a lot of rice and beans to control costs. (She had similar complaints at the other places she’d stayed, too, so a grain of salt must be taken). She also told me she was not taking her morning meds so she could stay awake during the day, although there wasn’t much for her to stay up for. No activities interested her. All they do is play Bingo. Nothing on TV that she liked. No movies. (I had meant to bring DVDs for her to watch! Damn! I remembered the Poise Pads, but forgot the entertainment!)

Mom suggested Bob and I leave. She didn’t want to take up any more of our time. But she made another case for moving. “I know I heard her say ‘Rosalind, I forgive you.’ Maybe she’ll reconsider?”

This was Mom assuming that one of her delusional characters was responsible for her having to leave the last place. No point in trying to clarify. No one threw her out or blamed her for anything. They simply could not provide the kind of care Mom needed at the last place. Here, they can. But she didn’t know what she lost until it was gone. Sorry, Ma.

Looking around the place, it was obvious that Mom was indeed the most able and lucid person in the place. Several new residents had arrived in the last couple of weeks, and none seemed nearly as alert or verbal as my mother. One resident in particular really ticks Mom off. She has no boundaries, so I really get why Mom hates her. Mom curses at her and has said repeatedly that she popped her in the jaw. I still don’t know whether that really happened or not.

On the way home, Bob knew I was troubled. “Maybe she can be moved to a facility for higher functioning people” I thought out loud.

“You can’t keep moving her.”

“I know.”

“You did the right thing.”

“I know. But it still hurts me to see her in that situation. I want professionals to tell me she’s in the right place.”

When we got home, I emailed “Julia Roberts” (the facility director) and told her what Mom had said and asked about options. She replied that she’d be in Montville today (Monday) and would call me from there.

My kitty, Cody, spent much of the night with me. He cuddled and tickled my face with his paw as I slept. Funny how pets pick up on our emotions.

In the morning, I reached out and got some supportive feedback. The term “guilt” comes up more often than I’d like, though. I AM NOT GUILTY. I have no reason to feel guilty. I have repeatedly gone above and beyond on her behalf. What I do feel is compassion.

It’s terrible that Mom has to be in a place where everyone else is so much less able than she is. It’s like being a sixth grader plunked down in a kindergarten class. Mom’s social worker liked this analogy. He called me today, at “Julia”‘s request no doubt.

This social worker is a “peer,” someone older but lucid, qualified and employed as a therapist/sounding board/support system for residents like my mother. He visits weekly and had seen Mom last week. He was sympathetic and told me that Mom was one of 100% of residents who wanted out of their facilities. They all want to go home. That’s just a given.

But what about someone like Mom who’s psychotic, but still so relatively self-sufficient and articulate? Isn’t it right for her to feel misplaced? She isn’t like the rest. She has so little to occupy her. Is it too soon for her to be in this particular setting?

He agreed that Mom was indeed more lucid, but she did clearly need to be watched, right? Haven’t her doctors determined this need?

I explained Mom’s recent adventures in psychiatry and violence. There’ve been many doctors attending to her and trying to strike a balance of medication and appropriate setting. It has not been easy. I chose Potomac because it was pretty much the one place that would have her. Other places are too big, potentially inciting her paranoia. The best thing that can be said about her current location is I haven’t gotten a single panicked call for intervention since she moved in four weeks ago. That’s a new record.

My Monday morning included a visit to my chiropractor. Since stress affects the spine, (and because I can’t exactly hide my inner torment), I told him what was going on. He, too was sympathetic. Don’t we all deal with this to some degree? He told me his father was a very strong-willed man. When he started developing dementia, he went to bed one night and didn’t wake up. He willed himself to die. Boy, that’s will-power! He told me to remember that I was doing my best and that’s all anyone can do.

Once at home from my errands, I sat down at my computer to write out my angst, and a message from my dear friend was bouncing in my browser. This friend from high school, more a brother to me than anyone else in my life, has always been tuned in to my “cosmic cries for help.” Today was no different. We chatted for an hour and a half.

As I was sitting down for a late lunch, Bob called. He knew I was hurting. He just wanted to see how I was.

Another call came from a woman who is setting up Mom’s evaluation at Potomac for her long term care claim. Another reason I can’t move her. She has to stay put long enough for her claim to finally be satisfied.

And “Julia” called. She spent some quality time with Mom. She spoke with her caregivers and her more lucid housemates. Mom is actually doing fine. She has her own routine. She’s not acting out, is taking her meds and isn’t showing signs of anything negative. She is acclimating. And some new residents who are more on Mom’s level are coming in shortly. That’s welcome news.

What it all comes down to is, someone has to be the grown-up. Grown-up decisions are not easy. But I was given this job, and I’m doing it to the best of my ability. There are no easy answers, no perfect situations. Compromises must be struck. Accommodations must be made. And I have to hold on to one irrefutable reality: my mother has dementia and psychosis; she needs to be watched and cared for; she is in a place that provides care and security. Now I need to find the peace of mind that comes from accepting that, and the strength to continue facing my mother, no matter what she ultimately becomes.

Can I go home now?


About traceysl

Digital Artist, creative technologist, problem-solving lover of life. Having cared for my mother, who died on April 14, 2015 after a long fight with dementia, I have refocused professionally to helping others through my experience. I have started a company called Grand Family Planning to provide unique Family Support Services. In this way, I share my knowledge and give meaning to the tragic turn of my parents' journey through the misery of dementia.
This entry was posted in aging, caregiving, delusions, dementia, Family, life changes, psychosis. Bookmark the permalink.

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