Blog 15: A New Life With Alzheimer's

I kept a journal during the time that I was living with mom. I felt that it was important to document some key things that were going on then.  I wrote down things that happened during the course of the day…I quoted things she said that I thought was noteworthy. I wrote of the good times, the bad times, the funny things Mom said, and the mean things, too. I wrote of her doctor appointments and how those went. Some of my sisters also wrote in the journal when they were with Mom, but it was mostly me who did the journaling. It was a way for all of us to know what was going on daily with Mom.  So when someone came over to stay with Mom, they knew how the day or week went.  When I moved I gave Lynda the journal so my sisters could continue to write in it.

That journal is gone now, supposedly 'lost in the shuffle',  so I don’t have accurate dates and have lost some information that I could have blogged about.  I am writing much of this from memory, and as accurately as I can.  I have a pretty good memory, but I can’t remember everything.   I was so devastated that my sister didn’t place the same value on this journal as I did.  I don't know what happened to it, and according to Lynda, she doesn't know either.  Whatever the case, it's not available to me anymore.  When I found out she didn’t know where she put it, it made me feel like a piece of me was lost, a piece of my precious time with Mom was lost. I wished so badly that I kept it safely with me.  I'm so sentimental and those writings meant a lot to me.  I thought I was doing the right thing by handing it over to Lynda to continue on with it, and we would all have something special to keep forever. 

The first couple of months that I was staying with Mom she would do these chants. I call them chants because she would repeat herself over and over in a very soft voice. Most of the time she was totally unaware that I was around and listening to her.  She would be laying in her bed when she would say these chants.  Other times she would be walking to the bathroom, which she did constantly, and she wouldn't even realize I was sitting in the chair in the next room.  She would say things like, "I don’t know what’s wrong with me"…"there’s something wrong with me"…"I don’t know what it is"…."please God, please God, please God".  Each phrase would be repeated several times before she would say the next thing.  It was so sad hearing her say those things.  Her mind was doing some terrible things to her.  I would ask Mom if she's ok, and that would snap her out of it.  It was like she was in her own little world. She would also frequently say…I have to go to the bathroom, and repeat it over and over.  Mom was taking prescription drugs to combat the effects of dementia and I think it was a matter of finding the right combination of medication that would work for her.  I don’t know if the medicine had anything to do with it or if it’s just something that people with dementia do.  Eventually the chants happened less and less until they stopped happening.

We had to hide Mom’s medication because she had no idea how or when to take it on her own.  We had to administer her pills in the morning and the evening.  This highly perturbed her.  She wanted to be in control of her own medication.  The visiting nurses had discussed getting one of those pill dispensers for her but then we all felt that she would be too confused even then.  So, we had to find different hiding places because Mom would search the house and find them.  One time Kathy found a new hiding spot and put the pills under the bed in the upstairs bedroom. I’ll be darned if Mom didn’t find them.  I was there when she did a massive search throughout the house.  Boy, was she ever mad at me.   I caught heck from her and we had a bad day the whole day because of it. We had to hide her prescription pain medication too.  She insisted on having it in her drawer or in her purse.  I know it was a sense of comfort for her, knowing it was within easy reach if her neck or back was bothering her.  It was almost just not worth it to argue with her about it.  Instead, in the beginning,  I let her keep it in her purse.  It just meant monitoring her closely so she wouldn’t take more than she should.

I often refer to ‘we’, and that is because it was the same for my sisters if they were staying with Mom.  If I had to go out of town, one of my sisters would stay with her.   So we tried to be consistent in the way we did things with Mom.

I noticed Mom’s interest in certain foods and hobbies changed as well.  She used to paint landscapes with acrylics just a few years prior, but she lost interest.  She would still watch recorded episodes of Bob Ross on TV and she’d say, “I really need to start painting again.”  But when I would suggest going upstairs to paint, since she still had all the paints and brushes and blank canvases, she would always say no.  She loved drinking coffee in the past, but when she got Alzheimer’s she said she hated coffee and wouldn’t touch it.  She used to put 1,000 piece puzzles together, but that interest was gone, too.  Once I bought her a 200 piece puzzle and she did sit down to work on it with me and Kathy, and she was still able to put the pieces together.  But she quickly lost interest in doing any more.  Mom used to read the paper everyday.  She would pick it up from the front porch and read it with her coffee.  Not anymore.  The coffee ended first, and then collecting the paper came next.  I cancelled the paper, but then Mom suddenly noticed the paper wasn’t coming anymore and got upset when I told her I cancelled it.  Mom was also less interested in the television but she insisted she needed a new one…which she eventually got.

One of Mom’s favorite past times was going to bingo with my sister, Annie.  That was their thing.  Occasionally Annie would still take her to bingo, but Mom was less interested.  She said that Mom was really slow, but she enjoyed it.  Annie was Mom’s favorite during this period of her illness.  Annie had a lot of patience for her and they would take turns giving each other shoulder massages and rubbing each other’s feet.  But there were some problems developing in the relationships with the rest of the family.  I spoke of that in my last post.

Mom liked to go outside and walk around the block.  She was slow in moving but it was good exercise for her.  We’d get home and soon she’d be ready for a walk again.  So we’d head back out.  Also, Mom liked McDonald’s iced mocha and frappe drinks.  We’d take a drive to McDonalds to get her one and then she’d forget she had one and want one again. I’d say, "Mom you already had a mocha drink a little while ago".  Sometimes that would be enough, and she’d let it go, and other times she would keep asking.  Some days a sister would show up with one, so Mom got lucky and had two or three that day.  She seemed to crave those drinks.

I made sure I had healthy foods in the house for Mom to eat.  She liked my cooking and I made nutritious meals for her, since I tend to eat really healthy myself.  I loved preparing meals for her. Mom was able to go to the kitchen and get what she wanted to eat.  She loved to eat apples and bowls of cereal.  Her appetite was pretty good, but she was very thin.  It was hard getting her to drink water and I always tried to encourage her to drink more water.  She only wanted to drink juice, especially orange juice, and we would often go through a half gallon in just two days.

Mom still liked to do laundry and she would go to the basement to start the washer.  She would put just a few articles of clothing in it and when the clothes were washed she’d go back downstairs to put them in the dryer.  Sometimes she would keep going downstairs because she couldn’t remember if she had wash going or not.  I worried about her going down the basement stairs and I tried to tell her that I will go downstairs and load the machine.  But she wanted to do it herself.  Mom would sometimes do the dishes, too.   She didn’t always get them clean, and a lot of times I would rewash a dish or utensil before I’d use it, just to be sure it was clean. 

I was learning about Alzheimer's and Mom was learning what it was like to have a daughter live with her again.  We had struggles, but we managed to get through them.  Things weren't easy, and we weren't always happy campers, but I wouldn't change it for the world.  My next post is going to be a tough one, but it's what happened, and I feel it's important for me to share.