Dementia, Part 3
I have decided that having dementia is one of the worst ways to die. Like diabetes, the disease won't actually kill you, but it affects all parts of your life, for the worse.
With dementia (or Alzheimer's) any change is bad. Moving with my mom was a bit of a nightmare. Suddenly she didn't know where anything was. And just that suddenly she was unable to use a washing machine or dryer. Remembering where the apartment trash bins were was almost impossible. Even going out the door and across the walkway to the mailboxes required my coaching for several months.
In my mom's case, she apparently has what is called vascular dementia. Due to her diabetes, the microscopic veins in her brain have thinned. Sometimes an submicroscopic droplet of blood leaks through. When that happens it causes what equates to a short circuit in that part of the brain. In mom's case, it hit the short term memory areas first. I believe the leakage is still happening because she continues to loose abilities.
The loosing abilities part is hard. Once gradually, now faster and faster, mom is loosing the ability to do things that were once easy for her. She tries to cover the losses up. When she lost the ability to use her coffee maker she stopped drinking coffee. The hardest one for her, I think, was the loss of the ability to read for any period of time. This is my mother who is as big a reader as I. I should say, was. I suspect an eye doctor exam would show her eyes are fine. It's her brain that is not letting her comprehend for any length of time. She can read her name on her room door. She can't read a book, or even a magazine. Reading a card is difficult, though she can read the name of the person who sent it.
One of the worst side effects of dementia is something called Sundowner Syndrome. It's an even nastier part of the disease. I have no idea why it happens, but my mom has it. Some time starting in the late afternoon (though it can start much later or even skip a night or two) it's like a switch is thrown and my mom's brain flips sideways. My sweet, rational, mostly compliant mother is gone. In her place is a woman who knows what she wants and does what she thinks is necessary. All the while she has no idea where she is. I have lost track of the number of calls I've gotten from mom (mostly while I'm at work) asking me to come pick her up from this strange place she's in to take her home. And she's standing in the middle of our front room. Even my being there doesn't stop it. She has no idea where she is and wants to go home. Where home is varies. Usually someplace she lived in the past.
I always knew there was an emotionally manipulative side to my mom, but mostly she was good at hiding it. There's no hiding when she's in sundowner mode. She uses the most pathetic voice she can muster. And tries to hit all my emotional buttons. What's saved me is the fact that when she makes these calls when I'm at work, there's nothing I can do. She's safe, and she just needs to calm herself down and go to bed. I'd be home as soon as I could.
Mom with sundowners became a nightmare. I never knew if she would decide to go outside the apartment complex. I found her outside twice. Once she was "looking for me." Thank God she hadn't started walking someplace to look for me! It became harder and harder to justify going out at night. I even had to start limiting my social life during the day.
All of this is not new. People have been dealing with dementia for a long time. What was different for mom and I is that we don't have any family locally to help. My two adopted brothers and their children are all out of state (Alabama and Arizona). One of my own adult children lives and works two hours away. The other lives locally and helps when he can, but he works and has a girlfriend. So it was pretty much all on me.
A month or so after mom and I moved to our new location and the sundowners was really setting in, I knew I was getting beyond my ability to care for her. So I started looking for help. It's not easy to find. I have a minimum wage job and mom just has her social security. Private care for while I was at work is available. But the cost is more than I make an hour. There is senior day care, but it's Monday's thru Fridays here, mornings and early afternoons only. Who would keep an eye on mom when I had to work weekends or evenings?
I finally got mom signed up for MediCal, since they are the ones who handle the programs to provide in home help. Six months have now passed and mom is getting steadily worse. Finally got them out for an evaluation. All they would pay for was about 52 hours a month! My head was hurting just trying to figure out some way to get mom cared for.
Finally a ray of hope! A bout of heart/blood pressure issues ended up with mom in the ER one night in March. That triggered a care coordinator to be assigned to her. I was overjoyed to talk to that woman! She was a good resource source. But after checking everything she could, even she could only see one option - a nursing home.
With the trip to the ER, mom, of course, had to go see her regular doctor. Mom fell asleep on the examining table and the doctor and I had a frank talk. Mom was clearly worse. She had, in fact, in the last 6 months lost more than 10% of her body weight. That's normally when you contact Hospice. I swallowed deep and asked the doctor how long he thought mom had. He said, 6 months to a year, though she might surprise us. He recommended that I look into a nursing home for mom in the near future. His recommendation - keep her comfortable and happy.
The funny thing about my mom and her dementia is that she does have times of clarity. I treasure those. In those times she was realizing how hard her condition was for me. Instead of wanting me to promise to never to send her to a senior nursing facility, she was realizing that such a place would probably be the best place for her.
It was in one of those clearer times that Mom and I toured the Center that is now her home. She liked it. She was willing to go there. Partly because she realized what a burden that would life off me. In a way, it was one of her last gifts to me. Also a life lesson.
So, towards the end of May I moved my mom to the senior nursing home. After 2 days she wanted out. Even when she's not in sundowner mode she wants to come back to our apartment. But I have to tell her no. She understands that she cannot live unsupervised anymore. And I have to work. And to have a life of my own. Unfortunately for me, she forgets. We have the same conversation about why she's not coming home several times when I visit her. It hurts every time.
It's clear she's continuing to deteriorate. She's lost more weight. Her blood pressure continues to be problematic. In a moment of clarity before she moved she told me that she doesn't know how much longer she's going to be on this earth. I don't know either. I continue to mourn the loss of the mother I love.
Mom's sundowner times continue. The care center has put what my kids are calling a lojack bracelet on mom. It lets the Center know if mom decides to solve her problem by getting herself home. Apparently she has been taking off her PJ's some nights, and putting on day clothes, convinced that I (or someone else) is going to come and get her out of there. Mom called me one night, convinced that I was her sister and asking me to come get her. The next day the Center told me that mom wanted her sister's phone number. Luckily mom can barely use her phone. Her sister's number is already in there. When I asked, the nurse told me that mom had been asking at night. Hello sundowner! I explained that mom's sister was 2 years older, lived 3-4 hours away, had mostly uncontrolled diabetes, and didn't drive anymore. Sad.
So yeah, I really hate dementia. I have no idea how much longer mom will have to go through all this. At her request, I made sure the DNR orders were clear. They understand I have the medical, legal, etc. power of attorney for mom. It is a horrid thing to go through.
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