Thursday, September 22, 2011
bad blogger!! My love MA = DS and alzheimers
Yes!! Bad blogger is keeping my side bar "fallen" to the bottom of this page!! UGH!!
This is a picture from last year when we were also up north for 5 weeks. We always take a picture of the kids at the end of summer up here. It's kind of like a yearly first day of school picture.
As we were getting the kids ready to take the picture,(waiting for the teenagers) MA slipped in here. I made her that sweatshirt- it says "Camping Woman". :o) She was/has always been our best camper. She used to take great pride in being a co-owner of our lake property. You see her payments to the group home help pay for the property. We told her this, she has supported our kids, our adoptions. We OWE her! She told her family and others that she had lake property. They poo-pooed her, but it was true! She doesn't understand those kinds of things anymore. I try not to think of the day when she won't be able to come up here with us anymore. We still OWE her, we tell her that often.
MA has DS and alzheimers.
I've written about it before. But I wanted to update everyone. It's more noticeable each year. Before the alzheimers, MA was like a 2nd mother to our kids!
I hate alzheimers. It steals the person you loved and gives you a new person to love. Things you took for granted change. I don't know how long it took MA to be potty trained but by 49, she was no longer able to hold it. Tonight at dinner there was a flood under her chair. She lost control. At the dinner table in the bunkhouse. No running water here, and bag already full of wet pants from today ready for the laundromat first thing tomorrow. Depends and adult diapers just can't hold it all. Why oh why don't they make something that will!! We make changing her wet pants so much fun that she doesn't even notice that the mess is everywhere. On her slippers now. She feels no shame- bless her precious heart. She just smiles, tells us "good dinner" and chattering on her way to the outhouse to change. Once out of the outhouse she tells me "Goodnight" and how much she loves me. No, it's not bedtime, but we spoil her now, we let her (within reason) do only what she wants. Sometimes spoiling her backfires. If she does something naughty- she adamantly blames everyone but herself! This is not my MA who used to have 2 part time jobs, live in her own apartment for 6 years and call me on the telephone when she needed me to come over.
You work so hard to teach them independence, politically correct behavior, math, reading, social skills. Only to see it all end. For our Susie it ended at 38. For MA it is going much slower, but too fast. I planned on growing old with Susie (a year younger than me) and MA (the same age as me). I know- life is what happens when we've made other plans. I thought we'd hobble around together. :o)
After 24 years of teaching independent living skills to adults with disabilities, I now provide end of life care for adults with disabilities. It started with Susie who died in '04 and then our daughter Molly in 2010. We've come full circle- Tom, me, MA and SP and now JC. Health wise Tom- the oldest of us- is the healthiest of the 5 of us. Poor guy! LOL!!
My MA no longer remembers what size clothes she wears. How to play cards. What day it is. Or when she last ate. She is choking on her food more frequently, aspirating things. Some days she's filled with joy and happiness. Some days she is angry and you can't reason with her.
But no matter what I thank God for having her in my life for 24 years. I hope I will be with her until the end, Lord willing. She has blessed my life incredibly, I can honestly say she loves me as much as I love her. In the early 90's I called her my "best friend". I didn't mean exclusively, I meant she was/is a best friend to me. Social workers were not happy, they poo-pooed that a "client" with a disability could be a best friend. They were wrong. She is my confidant, my best buddy (as she calls me) and my best friend. She is a gift from God.