Wednesday, September 14, 2011

My Mom and Alzheimer's Disease

My mother has Alzheimer's Disease.  There are seven stages in this disease but the stages are fluid, meaning that one might float back and forth between two stages at any given time.  My mother clearly has some symptoms of the seventh (and last) stage.  The first time I saw something in her that made me suspect the disease was 13 years ago.  No one else could see it for some time after that.  During these 13 years I have watched my mother become someone else.  At first I watched from a distance as we lived in different states.  Now we are to the 4 year anniversary of her living nearby me in an assisted living center.  My father was her caretaker at home for a number of years before that.  It was so hard on him physically and emotionally.  Mom would go three days straight without sleep and since she is a wanderer, he couldn't just go to bed.  He survived with catnaps.  He learned to do all the household tasks that my mother would never allow him to do in her good health years.  But one by one, she was no longer able to do them.  He learned to do laundry, and cook.  He washed the dishes and did any cleaning that got done. 

Mom got to the point that she no longer knew who Dad was.  She was afraid of him.  Yet if he talked to her on the phone, she knew his voice.  She might look straight at him and ask if he knew when Keith would be home.  Heartbreaking for my father.  She knew that it was Keith she could turn to comfort and safety but her brain just wouldn't allow her to find him even when she looked at him.

When her care got to be too much for dad and we worried for his health, my brother built an addition onto his house for them to live there.  It was in some ways helpful but didn't solve all the problems.  With hindsight, I can see that the biggest hindrance is that the family still tried to treat her like mom.  She still had opinions and we tried to honor them. The problem was that she had lost her ability to be rational.  So she only wanted my sister-in-law to care for her instead of the help that they hired.  

I looked into assisted living situations where they lived and around my sister's home and around my home.  The obvious choice was clear and we moved her here to live at The Homestead.  At first my Dad would just come to visit for a couple of weeks and then go home for a while.  The trip was hard on him and he missed her when they were apart.  

Two and a half years ago she fell.  She had fallen a number of times but this time she broke her hip.  I was told by her doctor that this was the beginning of the end.  Most elderly people die within 6 months after a hip break.  My two older children became missionaries soon thereafter. My daughter would be gone for 18 months and my son for 2 years.  I told them when they left that Grandma would likely not be there when they got home.  Didn't happen.  She was actually healing quite well but then got a blood clot which took its toll on her abilities so she can no longer walk.  She can't stand without assistance and now she can't even work her way out of her chair.  That sounds like a bad thing but in some ways it is a blessing.  She could never remember that she had broken her hip so she would still try to get up and walk and falls were pretty frequent.  One time she broke her arm but most of the time it meant a trip to the hospital just to know that nothing was wrong.  Since she has gotten too weak to work herself out of the chair we don't have so many accidents. 

At one point I was approached by management of The Homestead as well as her physical therapist.  They both suggested that Mom be placed on Hospice.  To qualify for hospice they have to expect you to die within 6 months.  It was at that point that I asked my Dad to come and stay permanently.  If something happened to Mom I didn't want him to feel terrible because he wasn't here.  He has been here living with us since.  Mom was on hospice for a couple of months and then they took her off because she obviously wasn't dying fast enough.  Dad spends all day with my mom and all night if he feels it is needed.  She has trouble feeding herself now so he feeds her, freeing up the staff to do other things.  When she is awake he entertains her with stories, or reading to her, or playing music.  When she is sleeping he works on family history.  He recently published a book about his life and is now working on a book about Mom's life. 

So now Mom sits in a chair all day. She is losing her ability to talk.  On rare occasions she does pretty well but not often.  Sometimes she will sit and stare not seeming to register anything.  No words come then.  Other days she tries to talk but she mixes Swedish with English or gibberish.  Often she can't come up with the words to finish a sentence and it is frustrating for her.  And sometimes she can say the words but they just don't make sense.  Then she gets frustrated that we can't understand what she is trying to tell us.  

Still I prefer this to how she was 4 years ago.  It seemed to me that she spent 95% of her time either very angry, very confused or very scared.  Such extremes and none of them pleasant.  She is calmer now.  She sleeps a lot.  She is mostly cooperative with the staff and most days she knows my father.  

One of the most asked questions I get is "Does she still know you?"  It is hard to say.  I think that most often she has known I'm her daughter but if she calls me by name, it is frequently my sister's name she uses.  My sister is the oldest so the name has been in her head the longest.  It makes sense that she would remember that one more frequently.  What I'm not sure about is does she call me that because she thinks that I actually am my sister or just because that is the name her brain comes up with?  In the past she has corrected herself and called me Maria but that hasn't happened in a long time.  and she doesn't call me by any name very often now.  I was never offended by this.  For one thing, I grew up with her calling me by my siblings names before she found the right one.  But I also figure if she calls me by my sister's name it means she knows I'm her daughter.  It is all in the family right?  Back when she used to get so angry she always called me by my sister's name so I  could always feel like it was her getting in trouble and not me.  My sister said she was glad to take the blame. :)

The mom I grew up with is long gone.  Her brain has deteriorated so much. Her body is crippled.  Still she has a sense of humor.  In some ways it is better now than it was before she became ill.  It warms my heart to see her smile because I get to glimpse her real personality for a second.  In that second, my real mom shines through.


just me said...

thanks for sharing Maria. I needed to read this tonight. I'm struggling with my mother's Alzheimers as you know..... right now I'm thinking that my dad is the one that is deteriorating because of his time dedicated to her care. OH I want him to read this blog entry!

Ria said...

You are welcome to share it with him. I'm glad if it is helpful to someone. I like to read about your mom too. As I always say, "This disease stinks!"

Anonymous said...

Beautiful story! My mother inlaw is suffering from Alzheimer and I see the toll it takes on my husband since he is her primary care taker... She is divorced. My kids will never know her or how beautiful of a heart she had...I will pray for your mom as I pray for all the others with this disease that robs us our loved ones. Just sad....