History of Barb's Caregiving

This caregiving of Mom is really only a continuation of family caregiving I have done since the early 1990's. In 1990, I was diagnosed with multiple sclerosis and had a bad exacerbation at the time. By fall of 1991, the worst of that flare up had passed and the residual damage remained. In August of 1991, Dad had a seizure behind the wheel of his car and could have killed himself and Mom - his driver's license was taken that day. He already had emphysema. One week later, Mom was told she had macular degeneration and was going blind.

In 1992, my husband was diagnosed with rheumatoid arthritis. By 1996 he was in bed, watched TV, used the bathroom and returned to bed. They gave him morphine for the pain.
Also by 1996, Dad was in the hospital over and over with small strokes (TIA), congestive heart failure and worsening emphysema.
In 1997, Dad died on Sept 30.

One of mom's brothers, Johnny, presented with symptoms of dementia. His wife was already in long term care and there were no other relatives in town. Johnny had no children. So, I took over this life as well as I could. He was the sweetest man in the world, told me long involved stories about people who parked in front of his building. He believed they were breeding and selling dogs from their cars. By March of 1998, he was in long term care. His dementia was extremely aggressive and he died in November of 1998.

Then Mom's sister, Joan, presented with dementia. No relatives in town, widow, her daughter lived in London - came over when she could but had a job.
From Joan I learned how to laugh again. I have a story about taking her shopping.

The Great Shopping Cart Caper

Most of us who are family caregivers would call this a thankless job. My mother, who is blind, believes that in my heart of hearts, I really want to go grocery shopping with her, not with my husband and certainly not by myself. The idea!
But within this thankless job there are moments of pure pleasure, if you allow yourself to see them. Taking confused aunty to Safeway was always an exhausting but oddly stimulating afternoon. She would lose her cart and take someone else’s. I would find her wandering the soup aisle, her favourite place, and notice a large salmon and three turnips in her cart.
“Joan, is this your salmon?” I would ask.
“What salmon?”
“This 14 pound salmon right next to the turnips.”
“Someone stole my buggy,” she would cry out, and the search would begin for a puzzled shopper wondering what happened to her fish and why it was replaced with three hand picked sticks of celery. We would transfer the cans of soup from one buggy to another and carry on until I next took my eyes off Joan and she resorted again to the “Great Shopping Cart Caper.”
Mother would always be with us, too, and it became my greatest wish that I could have a leash for both of them. Mom would be wandering along peering closely at the Kotex boxes wondering if they were cereal, Joan was in the soup aisle and I was looking for both of them.
The upside? When Joan moved out of her house we had enough soup to keep the Mustard Seed going for a week and enough Kotex to insulate our wall.
We would then go to lunch where Joan would say in her loud voice, “There are a lot of fat people in here today, aren’t there, Barb. Would you like to taste my soup? And what will I do with that salmon?”

Joan died in the early 2000's - cancer. I missed her terribly, despite the fact she was a handful. that left my husband with RA, my blind mother and me.

Coping with all of this took the help of many - primarily the Family Caregivers' Network Society. Their support groups, phone support and education programs literally saved me. I will talk more about them in my next post.

perseveration aka hell

Had a bad week - Mom very obsessed with one bodily function - tells me again and again that the doctor changed the medication and that's why she's having this problem. Doctor changed the medication two years ago so this was a simple problem - she ate something wrong or has a touch of a flu. I tell her this. She argues - tells me that the doctor just did this change. Everything is compressed now. Everything she remembers has just happened. I tried to reason with her, she argues, I explain again, she argues until I finally got mad and yelled. Was very ashamed of my own behavior in the situation. I find it hard to realize that mom, my bright intelligent mom, is now unable to learn.At the Alzheimer meeting that night, I cried. So disappointed in myself - partly that I could not make her "get it".Learned that what she was doing is commom with dementia. It is called perseveration. It happens when one idea cycles and cycles through the brain. Nothing can change it. Useless to argue, lecture, try to teach or try to fix. "You know what perseveration is.....per per per." That joke was made at the table and I laughed. I now have the tool I need to deal with future cases when Mom is driving me crazy circling an idea. I can think "It's perseveration - per per per" and have a private giggle - just for me.When I saw her Friday, she had forgotten all about the intital problem. Yeah!!!!
March 29, 2009 5:31 AM

Today I comfort myself by re-reading an op-ed I had published in our local newspaper in response to an editorial "Help Also Needed for Caregivers"

The editorial states that "only about one in twenty of the caregivers said they were not doing well." This figure alone is serious enough but it's nowhere near the whole picture.
If I was asked today, I would say I was doing well. I am. I have health problems of my own but they are taking second place in my life. That's where they should be. If you asked me if I was happy, I would say yes.
Then ask me if I live my life with a deep-seated sense of sadness and dismay and I would say yes, because that is true. I currently caregive my mother, who is 94 and blind. There are moments and days of joy, but the sadness is there. I lose a bit of her every day.
I no longer expect my mother to put her arms around me and comfort me if I have a loss – instead I imagine Mom lying on her side in the palm of my hand. I feel her frail body while I hug her and she tucks her head under my chin.
I love Mom to distraction and yet the load of being the repository for her memories is heavy. Being her best friend all the time weighs on me like the weight of the Dorian Gray.
I am overloaded by the need to be alert all the time. I fight to unclench my teeth despite my determination to understand that her brain has lost its elasticity and some of its synapses. I must always be here. She deserves that care.
My friends don't want to hear about my issues with caregiving, home support and loneliness. Balancing my life is my issue, known only to myself. When I get short with Mom, which I do on occasion, the guilt is mine – even when she forgets that it even happened.

This comforts me because it brings me into a large community of family caregivers and I feel less insane.