Journey Through Dementia

Journey Through Dementia

Sunday, March 24, 2013

Free at Last

Anybody who has traveled the road that I have just barely started on will identify with this, and I really hate to complain again, but today I just really reached saturation.
 
I came home to Davis after my trip with my mother to Springfield Place because the next day I was working at Logos.  Only then I ended up with an intestinal "thing" that made it unwise to be out of the house for that long, so I just stayed home, and must have needed the sleep because in spite of nearly 8 hours sleep at night I also took a good nap during the daytime too.

I drove back to my mother's in the evening.  Her doctor had ordered a Holter Monitor (a portable EKG that records for 24 hrs) that was going to be put on her at 10 a.m. on Friday and removed at 10 a.m. on Saturday.  So I stayed Thursday night so I would be there in time to get her to Kaiser by 10 a.m., and then Friday night to get her to Kaiser first thing Saturday morning to have all the leads removed.

By Saturday morning, when she woke up and handed me the monitor and all its cords, off of her body, and said "I don't know how this happened, but they all came off," I had reached saturation and had to get out of there.  I packed up the monitor, wrote a note to the EKG department, drove to Kaiser at 8:30 a.m., broke into the office and left everything on the receptionist's desk in the darkened office (well, technically I didn't actually break in...the door was unlocked, but there was nobody around).

You know, I don't know how moving to independent living is going to help her memory (though they do have a program that is supposed to help improve memory and I can't help but believe that more social interaction is going to help too) and it's not going to change how often I visit her, or how much I help her with, but if nothing else, it will ease my mind to think that there are people around her all the time (whether she leaves her apartment to interact with them or not) so that if something goes wrong, someone is there to help and she won't have to wait for me to drive 80 miles, or Ed to come, if he's not camping, or her friend Jim to stop by twice a week to see if she is still alive.  She has a wonderful group people, over and above Ed, Jim and myself, who love her and who do lots of things for her, but being with her 24 hrs a day for the past essentially 3 days has made me realize that even though we are doing a lot, it's not enough.

Let's start with the Holter monitor.  I know it's a foreign concept to her, but I must have told her 100 times what was going to happen, including showing her a picture I called up on my cell phone to explain what would happen.  "Where am I going?" "And what am I supposed to tell the doctor" (I told her over and over and over again that we were not going to see the doctor), "where is the office?" "What are they going to do to me?"  "What are they going to tell me?" "Will they give me the answers right away?" I answered every question as if it were the first time she'd asked it, because in her mind it was.   I didn't mind...but I sure got tired of repeating myself so often.

I joke with her about not being able to remember her doctor's name.  Not remembering a name is not unusual (heck, if it were, I'd be in big trouble), but her doctor's name is Dr. Caron and my sister was Karen and both are pronounced identical.

There was the question of what we were going to have for lunch.  We were going to go out.  We were going to eat home.  We would go to the club.   What should we do for lunch?  Should we go to the club for lunch or for dinner? Would I like to have lunch at the club? Etc. 

I had forgotten that I was staying two nights instead of one and had not brought a change of clothes, so yesterday afternoon I found a robe of hers and put that on and washed my clothes, along with the towels I had used during my shower.  When the clothes were dry, she took the clothes out of the dryer, folded the towels and went wandering around the house trying to remember where she keeps towels.  She even checked the cupboard where she keeps her pots and pans.  I didn't want to let her know that I realized she was lost, so I took them from her and told her I had taken them off the towel rack and would put them back.  

When we ran out of toilet paper, she could not remember where she keeps the toilet paper.

And getting old.  My god am I tired of hearing how old she is.   It starts first thing in the morning with "oh god, I'm tired of getting old" then why is she still alive when all of her siblings died a long time ago, do I think her husband is still waiting for her? Why is it taking so long and a whole litany of questions and comments, which are repeated many times throughout the day.  Ironically, this is the very thing that drove her crazy when her mother-in-law (who died at 106) was trying to die...the constant comments about how tired she was of living and how she just wanted to die (though my mother says there are still things she wants to find out about, so she's not ready yet).

This morning the very first thing she did when I went to sit on the bed with her was to point to two tiny blood  bruises, the kind that all old people (me included) get and to ask for the 1,000th time why she got them.  I explained--again--about the thinning of skin and how when older people brush against something it broke a tiny blood vessel, and told her that Walt's mother had them all over both of her arms.  Then she slaps them, tells me she hates them and that she has to cover them up with long sleeves because they loook ugly and that they make her look old and she doesn't want anybody to know how old she is.  

(Despite the fact that she tells EVERYBODY how old she is because she does not look 93 and she gets great satisfaction out of the looks of astonishment and disbelief on the face of everyone.)

Twenty minutes later she is showing me the same bruises and asking me again why she gets them.
We spent a lot of time on "all this crap" in the house and how she wanted it gone now, but when I offered to put it all in a bag and cart it away, she says she's not ready.  Then she says that she's not ready to move, but she just wants all this crap gone.

Gone are the days when we could have a conversation about ANYTHING other than how old she is, how much she wants to die, and how "messy" her house is.  She even only told me the story of my aunt "drunk as a skunk" sitting on the pot in the back yard of her childhood home only once, which is a new record, though I did hear twice about her mother getting a new car--once given to her by my aunt, and once by my mother's uncle (same car, same story, different giver).

The thing that is amazing is that she has developed so many coping mechanisms, ways of being coy or cute or saying things like "Oh, I knew that--I was just having a little joke" that unless you are around her a lot, people think she is better than she is.  I know that salesman Scott at Springfield was convinced she was understanding everything he told her, but when we got in the car, she didn't remember diddly squat.  When I got to her house on Thursday night her stepson Ed was there having dinner.  I said "did you tell him about our adventure yesterday?"   She didn't remember that we had done anything or where we had gone and remembered nothing about the place.

Oh, I know...I know...I know she can't help it.  I know she would be appalled if she realized how much she has forgotten and how much she can't retain, and I really try to be patient with her, but three days of it constantly just got to me and I had to leave before I lost my patience.  I'll be back again on Tuesday, when we are finally doing Cousins Day again.

(My resistance was also probably a bit lower because I hadn't quite gotten over the intestinal "thing" either.)