It took a while but then one day I learned one of the most important lessons of dementia care - something had to change and that something was me.
By Bob DeMarco
Alzheimer's Reading Room
For the first 18 months while I was taking care of my mom, Dotty, it was mostly heartaches and stomach aches. Every time I tried to help my mom or convince her to do something it seemed to backfire on me.
My mom would end up in her bed, curled up in a ball, and would refuse to talk to me or come out.
My mom was living with Alzheimer's disease. And, as her caregiver I was also living with Alzheimer's.
I tried and tried and tried to be nice, loving, caring, and understanding. It didn't work. The harder I tried the worse things became.
I was wracking my brain and trying to figure out what I could do.
- I was tired of hearing my mom telling to get out,
- that she didn't need me,
- that she could take care of herself,
- and refusing to cooperate with me no matter how hard I tried to convince her that she needed to cooperate.
I really didn't think I was doing anything wrong. On the other hand, I must have been doing something wrong because almost everything I did backfired on me. I seemed to get exactly the opposite response I was expecting, or the response I was hoping to get.
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For me it started to changed on May 7, 2005 at 1 AM in the morning. That was about day 540 of taking care of my mom. 540 days of mostly heartache.
I was sitting there thinking and it dawned on me. Something had to change. And then, that something was me. In others words, if I kept on doing what I had been doing it was never going to work. It was up to me.
After a couple of days of thinking about this I invented a place I first called Dotty's World. I made a simple decision - I would go into Dotty's World and try and figure out what she was feeling, how she was feeling, and why she was refusing to cooperate. I also wanted to get rid of the heartache.
1. The Day I Learned Less is More
One of the things that was driving me crazy and leading to Dotty being mean to me was her daily attacks on our freezer.
Around noon time Dotty would go to the freezer open it up, start unwrapping things, looking at them, and then throwing them back into the freezer.
We have one of those refrigerators that starts beeping if you leave the door open to long, or if you don't close it properly. Beep Beep Beep. Typically I had to listen to that beep about 27 times. The sound was driving me crazy, really making me feel disconcerted. Dotty? Obviously she couldn't hear it, so it didn't bother her.
Typically when this happened I would go into the kitchen and try to help my mom.
- Mom, can I help you?
- Mom, what are you looking for?
- Can we shut the door on the freezer?
Each and every time the same thing would happen. Dotty would get angry. And like a penguin it was off to her bedroom and into her bed. She would curl up in a ball and refuse to talk - other than telling me to get out. On the worst days, she would start whimpering. Those were some of the worst days of my life.
My big decision. I'm going into Dotty's World. From now on I am going to keep my mouth shut, and observe. Just watch. Observe. I was going to try and figure out what Dotty was doing, and why she was doing it.
The freezer is beeping away, the door wide open, Dotty is unwrapping stuff, taking a peek and throwing it back in the freezer. Me? I am just standing there leaning up against the way and watching - observing.
Dotty finally gets done and closed the door about 27 beeps or so later. She looks at me. I smile. She smiles back at me. I don't say a word, and neither does she. We go about our business.
Day one, no heartache, no stomach ache. No Dotty in the bedroom refusing to come out. I think - Dotty'w world is a good place. Later on in a couple of weeks I decide to rename Dotty's World to Alzheimer's World.
Let's think big I think to myself. Let's get into Alzheimer's World and figure it all out.
That is exactly what I did for the next 7 years. You read that right. In total I took care of my mom for 8 and a half years. 3,112 days. Yeah there was some heartache along the way. You can't control everything.
I did learn one thing. You can't change the past, but you can change the future. How do you change the future? You start NOW. You do it one day at a time.
For Dotty and me? I changed heartache and stomach aches into happiness and joy. Yes, excellent caregiving can lead to happiness and self fulfillment.
I mean what can be more meaningful than caring for someone who needs you so much?
- I figured out how to get my mom to take a shower without resistance.
- I figured out how to get my mom to take her medication without resistance.
- I figure out how to get her to go to the gym for exercise - well let's just say I got her there.
- I learned how to listen to her.
- I learned how to communicate with her effectively. I learned how to deal with her repetitive question asking.
- And most important, I learned how to embrace her reality.
In other words, instead of forcing my reality on her I learned how to deal with reality in Alzheimer's World.
It took me 7 years to learn everything I now know. I figure you can do it in a few months. You just learn how to do one thing at a time, then you move on to the next problem.
People living with dementia do change as the disease stages. So you learn how to change and adapt as you go.
It is quite a life experience when done well.
How to Get Answers To Your Questions About Alzheimer's and Dementia
Bob DeMarco is the Founder of the Alzheimer's Reading Room (ARR).
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