Sunday, March 25, 2012

Blog 23: I Do Not Have Alzheimer's

I struggled with a previous post because I don’t want to sound like I am picking on any of my sisters.  We all made mistakes when it came to how we communicated with each other in wanting to do what was best for Mom.  When I talk about what happened, I am telling the story as accurately as I possibly can, and the way it appeared through my eyes...what I saw and heard, and how I felt about it.  Of course I don’t know exactly what was going on in my sisters' heads unless they shared that with me. And we did share our thoughts with each other many times.  We didn’t always fight, we had many moments of crying on each other’s shoulder’s, too.  It’s just that as time went on, we began forming sides.  Our loyalties to each other shifted from one sister to the other, and instead of being united, we divided.  Some of us moved to one side, then moved to the other side, and then went back to the first side, and then left both sides, and then were alone.  Many times we were alone.  And Mom would take turns being mad at one of us.  That’s pretty much the way our journey through Mom’s alzheimer’s went.  I had my own beliefs in what I wanted for my mom, and that was for all of us to make adjustments in our lives so we could take care of her.

While I was living with my mom I didn’t see my sisters for long stretches at a time, like ten days in a row. Part of that was because of the animosity that was building between us.  And part of it was because my sisters were not wanting to face Mom’s illness and see it head on, and part of it was they were busy with their own lives.  Once in awhile one of my nieces would come over to help out and my daughter would make the three hour drive to visit.  If I was alone with Mom, I sometimes needed a little break, so I would go out for a jog or a walk when Mom was sleeping or if she was just sitting in her rocker.  She always said to go ahead.  I think she enjoyed the little time alone, too.  I would jog around the block so I could run by the house and check on her.  I had to get out once in awhile, and exercise was important to me. 

In the past Mom liked to have the house to herself.  If her husband went on a golf trip, or was gone for a day, she loved having her alone time.  She liked the quiet, and the fact that she could do whatever she wanted.  She would spend her time cleaning and organizing, painting, sewing, talking to one of her daughters on the phone, or shopping.  With me living with her since her diagnosis with Alzheimer’s, she didn’t have that freedom to do as she pleased.  She wasn’t able to drive anymore because (in her eyes, for some reason), I wouldn’t let her.  Even her doctor refused to tell the driver’s license bureau that she wasn’t fit to drive.  He admitted he didn’t want her on his bad side because she had been his patient for years, and he knew the letter my mom would receive from the DMV would state that he was the one who said she is not fit to drive.  Mom even did a driving test at the hospital, that she failed miserably.  Yet she still felt that she was a good driver and she would comment on that letter, saying that they didn’t know what they were talking about.  It was always an issue with Mom.  She did not feel that she was unfit to drive and she continually wanted to drive her car.

Mom liked to shop at the local Goodwill store and she would buy things she didn't need, like clothes, wall hangings, knick-knacks, and kitchen items.  Everytime she came home she would immediately go downstairs to wash the clothes and wash the other items.  It was just something she enjoyed doing and usually my sister Annie took her there with her.  I remember a couple of times taking Mom there.  She seemed confused and would wander the store just looking at things.  She never wanted to linger and was ready to leave within minutes.  Eventually Mom had more clothes than she knew what to do with.  She never wore them.  Her closets and dresser drawers were stuffed, so she bought this rack to hang clothes on in her room. 
About a month before I moved out of Mom’s house. my daughter flew in to town with her new baby, my granddaughter.  She was only two months old at the time.  My sisters came over at different times to see my daughter and the baby.  We were almost like a normal family then.  The baby brought new life, and lots of smiles and laughter.  What a wonderful distraction from what we were going through.  Mom loved having that little bundle of joy there.  She turned into a loving and nurturing great grandma and wanted to change her, feed her and cuddle with her.  It was so sweet seeing her interact with the baby.  She would lay down on the floor to look into her eyes and talk to her.  I thought Mom would get irritated when the baby cried because people with dementia sometimes don’t like noises,  but she didn’t seem to mind at all.  Instead she was so caring and comforting to the baby.  I took a ton of pictures, and so did my daughter.

Here's Mom with her great granddaughter.

Here I am giving my granddaughter a bath in the kitchen sink.
My mom had a couple of friends who would occasionally call or stop by.  One friend lived in Florida, so she only came by a couple of times.  Mom would talk to her on the phone and she would use that same excited voice in her conversations with her, but a lot of what she said showed her confusion and repetitiveness.  Another long time friend was a man who was married to one of her friends who had passed away, and he would come over every now and then and bring Mom a malt.  She liked visiting with him and I would give them some time alone.  He even took Mom out for dinner once and for a drive another time.  He was really good to her and this was good for my mom.   He would come by once a week to sit with Mom and visit so I could get out and do something for myself.  Once when he left, Mom told me he tried to get into bed with her.  I knew that they had romantic feelings for each other a few years prior, but it was more on his part.  She felt guilty and didn’t want to date a man who was once married to her friend.  After he left that day, he called me and told me what happened.  He said that Mom asked him to get into bed with him.  I don’t really know what is true, but I was leaning towards his side of the story.  In any event, he understood her dementia and there weren’t any problems after that.  This was only the start of Mom’s talk about sex.  

Mom would still often tell me to go back to my house.  I told her I don’t have a house here anymore.  She said she can take care of herself and she didn’t want me there anymore.   She would always ask, “Why are you here?”  I asked my sisters what should I say to her when she asks me?  I didn’t know what to say.  They didn’t know either.  I told her I sold my house and I’m staying with her until my new house is ready, but she didn’t buy it.  I don’t think my mom would have wanted me there for six months even if she was of normal mind.  She liked to be alone.  But I do know that she would have been very loving and understanding of my plight if she didn’t have dementia.  On one of our bad days (and I refer to them as being bad for both of us because if Mom was in a bad mood, it was a bad day for me too) she kept saying she wanted me to go home.  I finally just told her I was there because she has Alzheimer’s.  It KILLED me to tell her that.  I thought maybe then she would understand why I was there, but instead she got very angry and yelled at me and said, “I do not have Alzheimer’s!”  Then she would add, “You do!”

Whenever I needed to run errands or do anything, I had to bring Mom with me.  That is, if a sister wasn’t around to stay with Mom.  Anyone who is dealing with a person with dementia knows that it isn’t always easy.  Remember my post about taking Mom to the doctor’s office?  If it was a short trip, she was usually pretty good.  I would use all kinds of tactics, almost like she was a child, and I would bribe her with a McDonald’s latte.  She didn’t like to sit in the car for very long and she would complain that her back hurt, or she had to go to the bathroom.  I knew Mom always had to go, or she thought she did, so I would make sure she used the bathroom before we left...if I could get her to go that is. 

One day I needed to go to my storage unit which was about a half hour drive from Mom’s house.  All of my personal belongings and furniture were inside that unit and had been for six months.  I had made a couple of trips out there during that time to make sure all was well, and to swap out clothes for the changing season and get a few other things.  Well, this one particular day I had to bring Mom with me.  We had a lot of rain the previous day and I was concerned about my furniture and I wanted to make sure it was dry.  Mom was getting agitated and kept saying she wanted to go home.  She would say, “Where are we going?”  And I would tell her we are going to my storage unit where all of my things are being stored.  She’d far is it...when are we going to get there...I want to go home.  

By the time we got there she was in a pretty bad mood.  I couldn’t get the lock on the door to work because it was jammed.  Mom kept saying to hurry up.  The wind was blowing really, really hard, and I was freezing.  It took awhile to get the lock opened, and I lifted the large door to expose the contents.  There was my life inside.  All of my clothes and personal items, photo albums, furniture, my kids’ things I saved over the years...everything.  I saw water on the floor and my expensive mattress was soaking it up.  The rain had gotten in and several pieces of furniture were sitting in water.  I called the manager of the storage unit and he sent a couple of guys out to help me get the mattress and a couple of pieces of furniture up on pallets.  While we were waiting for them to arrive my mom was beside herself with frustration and kept saying she wanted to go and why are we here.  She didn’t understand what was going on.  I started to cry and I said, “Mom, do you want to know where my house is?   It’s right here!  Here’s my house Mom!”  I told her that these are my things, my furniture and clothes, and everything is getting wet.  I asked her to please be patient and we will go home as soon as we can.  I couldn’t get it taken care of fast enough, but eventually the men arrived and we fixed everything as good as we could.  When we left the parking lot Mom calmed down, and my heart went back to beating normally again.  I was feeling so sad.  I was drained, and all I wanted to do was curl up in bed.

In my next post I will write about me moving out of Mom's house.  What an emotional time it was.  Please stay tuned.

1 comment:

  1. You made tremendous sacrifices. That would be so hard trying to deal with water in your storage unit while your mom was confused and not understanding the situation.