Sunday, August 7, 2011

It's Come to This

There is nothing anyone can do to make my mother happy.

This is the sad reality I have recently come to accept, painfully. For the past 9 months, my family has exhausted itself trying to make my mother happy. It must be part of her dementia, or how the dementia manifests itself. Before her mind started going, complaining was just not part of her personality. Now it has consumed her, she complains about everything we have done to assist her.

Mom came for a visit in November last year. She wanted to try living in her house alone, after spending almost a year living with my sister in New Mexico after my father died. Mom made it one night in her house and then wanted to stay with my family. While she was not a burden living with us, it was stressful. She needs help with everything and is not capable of entertaining herself. We are a very busy homeschooling family, so she came with us to all of our activities. This squished the kids in the back seat of the car, leading to stressful drives. Mom also took over Medium's room, which she agreed to up front but came to resent later. The kids had to be quiet in the evening when Grandma went to bed and put up with a lot of her quirks.

When she decided to move back to the area permanently, we researched Continuing Care Retirement Communities, settled on one nearly half an hour away and moved her in. Mom was placed on the Assisted Living floor. The daily list of activities was encouraging, the community is full of vibrant seniors, many of whom use walkers or wheelchairs and are engaged in their surroundings. It is also in a beautiful place with many walking paths nearby, including one right outside the facility. It seemed the perfect place.

When Mom moved in, the community was experiencing an outbreak of a stomach bug. We hadn't counted on contagious diseases being a part of her new life. It was a prolonged outbreak because it passed quickly and spread even quicker, so people had it multiple times. The facility responded appropriately, shutting down the 5th floor (the Assisted Living floor) when it became a problem keeping residents in their apartments for the required 48 hours after the last symptom. I spent 6 weeks taking my mother somewhere every day to keep her from going stir crazy. There were no activities during the outbreak, to reduce the spread of the virus. Then Mom got it. Mark picked her up that day to take her shopping or for a walk, and she had forgotten she still had diarrhea. This is how the virus spread. My entire family got it.

When the virus passed, activities started and we were hopeful that Mom would have a nice, fulfilling life. Except she couldn't remember anyone's names or the conversations she had with them to make friends. And she didn't like any of the activities that weren't exercise related. That knocked out card games, word games, crafts, movies and book discussions - all those things that help with memory function. Plus, Mom thought the exercise programs too easy. So, we had her join the fitness center where she could work at her own pace three times a week with the help of a physical therapist. After we were gone one weekend in March for the fabulous InHome Conference and Mom decided to go for a walk with another memory impaired resident in 30 degree weather and got lost, we hired someone to come take her for a walk each day.

We thought Mom would adjust and learn to love the place. She complained about being dragged to activities, she complained about having nothing to do. She could not turn on her own television to watch the Australian Open or Wimbledon, so we drove out there to turn it on for her. She would either forget how to turn on her radio or end up accidentally changing the station, and then forgot to ask for help with it, so she was miserable without her music. She wandered throughout the building. On at least two occasions, she went to the concierge in the middle of the night in her pajamas to demand to be given her morning pills.

Then she started telling everyone how much she hated the place. As the weather improved and our schedules lightened up for the summer, we began taking her to her house in Indiana for the weekends. This became the only place she was happy, which meant we took her there nearly every weekend and for a whole week in July. She told everyone she ran into how much she hated living in her CCRC and even said "I don't know why they make me live there."

I spent a month working to arrange for live-in caregivers so Mom could live in her own home. (This took longer because of three major storms that took out our power three times, caused major tree damage, house damage from our tree to the neighbor's house, a complete loss of the entire contents of two refrigerators and a standing freezer.) The caregivers can live with her on an alternating schedule, so the two of them can get some respite and days off. They have agreed to walk an hour a day with my mother, take her to the store, hairdresser, etc. Mom can be in her own home, with her own books and her own schedule.

It's been a week. And she hates it. She has all the same complaints as she had in Assisted Living. I believe, though, that she is safer and better taken care of.

I had hoped for a magic bullet. Now I know there is none. My mother does not understand what is happening to her. The only thing that would make her happy would be to have her old life back. Her life before dementia and before my father's Parkinson's. I can't do that for her and can't continue to sacrifice my family and home to try to make her happy.

Maybe with time she will come to accept where she is in life. Maybe she will rail against it until the very end.

It is beyond sad.

3 comments:

mamagotcha said...

Oh god. I am so sorry. I wasn't nearly as involved with my own mother's last few years as you are (being across the country), but she had many of the same issues. My daughter, who studies neuroscience, said that she thought a specific part of my mother's brain was deteriorating (but for the life of me, I can't remember which it was...), and that she basically could never be content, and always had to blurt out every complaint and problem she had. It wasn't her fault, there was nothing to be done about it, but it sure made her last years unpleasant for her and for everyone around her. I am so sorry you are going through this, and I wish I had answers... just empathy and validation of your horrible situation.

Chris said...

Elizabeth,

I'm so sorry things have been so hard with your mom. My mom has been taking care of my 93 year old grandmother (she lives with them) for years now. It's really hard for her when my grandma gets nasty for no reason.

On a lighter note, I'm so glad to be a part of your homeschooling group. The kids love it so much! And I'm glad to finally be getting to your blog. I started a site called Interest-led Learning in March. I share a lot of ideas and resources as well as musings about unschooling and living through life. You can find it at www.christinapilkington.com. Check it out if you'd like. Also, I'm still willing to help with the conference if you need it.

Sharon Z-P said...

I doubt you'll regret the efforts you've made to help your mother later. Also, I'm sure you know that you're setting a wonderful example for your children about caring for one's own.