Monday, November 20, 2016

Imagine being in a state of perpetual bewilderment. This is what I think mom is experiencing. She is pretty graceful about it on the whole. The worst part is that she calls one or the other of us constantly during the day and night. We agreed that cleaning up poop is something we have learned to manage, but answering her constant demands is far more difficult to take.

Imagine still, that you ask a question, it is answered, and you immediately forget what you asked or that you asked it or that you received an answer to it. You smile, you ask again, only to be told that your question was just answered. Repeat this scenario a dozen, no 5 dozen times, and you have a day in the life of a person with severe dementia, or severe memory loss. It must be bewildering, frightening on some level (if you remembered enough that you had forgotten anything at all or that you ever asked the same question over and over or that you had ever received an answer, let alone many answers).

It’s exhausting for me and exhausting for Rob and annoying. How to prevent it from becoming annoying is anyone’s guess. When I try explaining to my mother that I already gave her an answer or already told her what she asked, she smiles and says, “Oh. I didn’t know.” And then she proceeds to ask her question again.

Is there a solution? I don’t know. All the memory drugs in the world cannot make a difference to mom. For us, perhaps earplugs or an office many doors away from her room. But she shouts. She knows how to be heard. Like a child, she is unrelenting and stops only when she has been satisfied, which all too often last only a very brief time.

For those who would recommend coloring, magazines, word search puzzles, television, she is long past most of this, most of the time. There is no solution, save one. And that is a sad one. No matter how annoying mom is right now, we will miss her when she is gone, but we won’t miss the constant interruptions and demands. This is an imperfect world filled with imperfect people and scenarios. I am reminded daily of the Nathaniel Hawthorne short story “The Birth-Mark.” In it, the beautiful Georgiana, who is physically perfect in all ways but for a hand-shaped birthmark on her face, is about to be married. When married, her husband, Aylmer, cannot abide the birthmark and devises a way to eliminate it. Eliminate he does and in the process, kills his wife. When the birthmark is completely eliminated, she dies. The removal of this one flaw killed her. For the high school me, the story was about man’s inability to be perfect while on earth. For the husband in this story, there were more complicated issues related to imperfection and fatal flaws. The initial fatal flaw turns out to be the lovely Geogiana’s agreement to allow her husband to experiment on removing the birthmark from her face.

There is nothing perfect on earth. There are no perfect people on earth. There are no perfect scenarios or solutions on earth. There is no perfect caregiving. Even the pursuit of perfection has at its core a serious flaw: it cannot be achieved.

So if my mother is imperfect and cannot be set right, my reaction to her constant demands—frustration—will also be imperfect. We are not to blame however hard we try to right this scenario. Aylmer lost everything to learn this lesson.

 

Friday, November 4, 2016

One of those mornings. Mom needed to use the potty and called for help, when she is perfectly capable of taking herself to the bathroom and does so throughout most of the night and all day. Valentino alerted me to mom’s calls. Rob needed no such wake up. We have long been up. Mom will enjoy plenty of rest today, sleeping while we work. It’s exhausting. Don’t let anyone tell you that caregiving is rewarding in any sense of the word. The rewards are all for those who are being cared for. Most of mom’s needs are seen to, which is more than she would ever receive in a nursing home. My reward comes merely from knowing that mom is clean, decently fed (as much as she allows), and has a comfortable bed and home. The rest is up for grabs.

 

Monday, October 24, 2016

I spent the morning running errands while Rob stayed at home with mom. Fortunately, Val was at the groomer’s. So there was one less creature to tend to. While I was at the car dealership waiting for state inspection on Greta Carbo, Rob called. He was exasperated.

Rob: Your mother wants to know where her ring is. She said she was wearing it this morning.

Me: Nonsense, Rob. Mom hasn’t worn a ring in ages. Look at her fingers. Besides, she gave her wedding ring to Marcy at least 6 years ago.

Rob: Talk to her.

Me: Hello mom.

Mom: I don’t know where they are. My rings are missing. I was wearing them this morning.

Me: No you weren’t mom. You gave them to Marcy years ago.

Mom: Will you help me look for them. I can’t find them.

Me: Ok mom. I know where they are. I put them away for safe-keeping. Let me talk to Rob.

Problem solved, Rob. You can’t tell her the truth. She doesn’t understand it. She knows only what she is currently fixated on. Don’t try to explain. See you later.

By the time I got home, mom had completely forgotten about the ring. She’s sitting on the couch now, singing away, wrong words and all. This will go on for quite a while. Fortunately, I can retreat onto the back porch. Pains me that I will lose the use of the porch in the cold weather, but for now, all is ok.

 

Sunday, October 9, 2016

I have not written in a while. I has become painful to recap the day and record mom’s decline—or as the aides over at Hearthstone say, “she’s sliding.” Mom hasn’t been to Hearthstone in quite a while, her dementia is too far advanced for them. Only today, I saw a woman there whom I had not seen in 2 months. She had been relatively healthy and even somewhat feisty. But I was dismayed when today she said she had to leave my prayer gathering because “My husband is going to pick me up.” Of course, her husband is long gone and now she is “going” or “sliding.” I spoke to an aide briefly about it. Apparently, this woman gets worse after breakfast and as the day wears on. Life eventually wears us all down to varying degrees. I just wrote to my uncle and tried to assure him that we would not go to way of the rest of our family members. His brother and two sisters suffered dementia, and now mom has joined them.

Meanwhile, I continue to study music, Japanese, and Italian. Is it possible continued study will help avert or delay something so heinous as dementia? Or is mental decline inevitable? Doesn’t seem to be for everybody. But then, who can know it? Better not dwell on it, better to spend my time studying, reading, enjoying life while I can.

All this time, mom keeps calling me.

Did I wash my face?

Yes, you did. Twice already.

When are we leaving?

We aren’t.

Oh.

Sandy! Marge! Sandy! Do I have to wash my face?

No, you did already.

Oh. When are we leaving?

We aren’t leaving.

Where are going?
Nowhere. We are staying home. Would you like to go for a walk?

No.

Would you like to visit Betty?

No.

Would you like to go to a movie?
No. I’ll stay here.

 Sandy! Sandy! Sandy! Do I have to wash my face?…

 It’s a lot easier to deal with someone other than a relative or with someone whom you can leave at the end of the day or your shift.

Years ago, Jerry, one of my yoga students, came over to pray for his two aunts, who had just died. We had suspected foul play, as his cousin was caring for the aunts. The cousin was a drug abuser, as was her boyfriend. It is likely that the aunts drove the cousin crazy with questions, requests, or whatever. Both were victims of dementia. The cousin, however, was hardly in a position to deal with them with equanimity given her condition and theirs. These days, I am less inclined to believe ill of the cousin, despite her drug addiction. Dementia is difficult to deal with on a 24-hour basis, even if you are living a relatively healthful life.

Right now, I am going to walk my pup down by the river. I have had enough of Sandy, do I need to wash my face? Sandy, where are we going? Sandy, when are they coming? I need fresh air and sanity. So does my pup!