Dementia Part 5

Dementia Part 5

   My mom was finally living in a place that was safer for her.  She had people to make sure she ate properly and on time, and to make sure she took her meds.  That was such a relief to me!  I still got the odd phone calls, but she was someplace safe.  I was able to spend more time at the Corona Renaissance faire (that I work).  I had been limited to only an occasional day during the run.  And I got to visit my daughter and attend Comicon for the first time!

   But it wasn't perfect.  The staff, while truly caring, had real communications issues.  And, as had been predicted elsewhere, some of mom's stuff started vanishing,  The coffee cup with mom's name on it was one of the first things to vanish.  The staff dealt with clothing vanishing by giving mom stuff that wasn't hers-probably from some former patient.  There will be a reckoning when mom finally leaves.

  Not perfect, but ok.  Mom decided, after the first week that she wanted no part of the activities, or the dining room.  I think she was appalled by the other patients and didn't want to see herself as one of them.  So she mostly stayed hidden in her room, until the need to walk came upon her.  The staff got used to mom walking the hallways.

   The one thing I really, really did not like was the doctor that mom was assigned.  Places like the convalescent hospital mom was at usually have young doctors that show up twice a month or as needed.  It gives those doctors some money while they are building their practices.  Unfortunately, the doctor that mom was assigned was the man we had nick named "Dr. Ass" when mom had been in the hospital a few years before.  A UTI had gone toxic, which eventually led to her needing a heart pacemaker.  Dr. Ass wanted to send mom home the second day, even though she was not lucid, vomiting, and with diarrhea.  Mom's heart wouldn't settle down at that point, so she got the pacemaker installed.  I think the heart doctors, as well as some of the senior hospital staff had words with Dr. Ass.  I was thinking seriously about a medical malpractice suit and the hospital knew it.  So yeah, back with Dr. Ass.  I made sure that man remembered who mom was.  Mostly he's been ok.  A bit of fear of me is a good thing.

   In the second month mom was there I was contacted by the social services person on site.  It seem Medical had decided that mom was "too healthy" to be at that facility and I had to find her a new place to live.  Or else they would start charging mom the full amount.  This social worker was from hell.  To say she played hardball with me was an understatement.  I left her office crying.  I couldn't even visit my mom that day.

   The social worker had given me some leads of places to look, placement companies to contact, including her personal choice.  I spent every free moment I had the next few weeks trying to find an alternative.  Mom could indeed afford the social workers choice (with no money left over to pay her bills), but it was almost a half hour away in a run down house.  And there was gang graffiti on the sidewalk in front of the place.  No thank you!

   I went through several placement companies.  The result was always the same.  Nice multi room houses with nice people running them or re-done apartment complexes but the cost was always more than mom could afford.  She has no other source of income apart from her social security.  I would have to make up the difference.  And I just can't.  

   I kept looking and kept going through placement companies, though at a slower pace.  Despite what the social worker had said, the law states that where she is at cannot just kick her out-mom has to have a place to go to.  Eventually the social worker from hell was transferred and the new one was more understanding.  The site did eventually start taking all of mom's social security check every month, and giving us a bill as well.  But she has a safe place to live.

   As we had expected, with the move (as with any change for dementia patients), mom did have a drop of skill levels and memory.  Not too bad at first.  Her short term memory was now down to about 15-30 minutes and she was starting to loose some of her long term memory, though most of that could be accessed with prompts.

  In the 3rd month she had an A Fib episode tied to a urinary tract infection.  I was at the movie theater when that call came in.  I told the Center to send mom to the ER (what they wanted to do) and I would meet them there.  Many, many hours later mom was released and sent back to her new home.  New meds and the center learned to watch mom for the UTIs.  That hasn't happened since.  

   Mom got better from the UTI, but as usual, another drop in memory, etc.  More and more mom was choosing to walk the hallways and not taking part in any of the planned activities.  Definitely a subconscious response to her environment.

   Finally, about 5 months in, a found a company that could actually help mom and I.  It turns out that CA has a program that will help medicare patients fund appropriate housing for poor seniors in need of care.  Glory Hallelujah!  Where was this information a year ago?  I was back to checking more locations-this time I was looking at places with dementia units.  They tended to be more expensive, but that really is the care mom needs.  I found a place about 20 minutes north of me, in the city of Downey.  It's a small dementia unit inside a senior housing unit.  It meets all the parameters I had and I liked the staff.  So with the help of this new placement company, mom and I applied for the waver program to pay for the Downey site.

   Getting our part of the application done was easy.  The company helping us was most efficient.  However, the application had to go to the state capital to be approved.  Around the first of the year we found out that mom's application was about to be approved.  Then the bad news that the process had taken too long (probably due to the Christmas holidays) and was denied.  We had to apply all over again.  Sigh.

   The holiday season was really hard.  Because of work I usually celebrate Thanksgiving the day before.  I made arrangements for mom to spend much of the day with me.  She was glad to be there, but it was confusing for her.  She liked being around her grandchildren, but was tired and glad to go back to her new home.  A few days later mom and I had lunch with her older sister, who was in the area.  My Aunt Louise and her family could see how poorly mom was doing.

   As the time moved towards Christmas I realized how much of my traditions were centered around helping mom to have a good holiday season.  With mom in the center, it was difficult to get her out on a day pass, so a lot of our traditions had to end.  Mom didn't miss them because she didn't remember it was Christmas.

   I had to re-think how I wanted to celebrate the holidays.  Some traditions I kept, though it was bittersweet, missing having mom (as she used to be) with me.  I added some new ones.  But it was hard, especially knowing that mom might not be around at all next year.

   Mom was with me for Christmas Eve.  I picked her up after work.  We had dinner (pre-cooked) and my kids come by.  After dinner I took mom back to her home and I got to spend some more time with my kids.  It was hard for all of us.  It was clear that mom is now a shell of her former self.  Christmas morning I visited mom, then drove down to spend the day with my daughter and her in-laws.  It was good for me.

And that's how 2014 ended.  I am convinced that dementia and Alzheimer's disease are the worst way to die.  Loosing someone to cancer is painful for them and heart wrenching for the family, but this is worse.  Watching a healthy person loose themself is much worse.