Sunday, October 7, 2012
Down Syndrome and aging
My sweetie MA started slowing down in her early 40s. A few of her peers from High School were slowing down quite a bit as well. MA lost a couple friends with DS to cancer and her roommate Susie who also had DS, developed early onset alzheimers. Jesus took Susie home by age 44. Considering the early aging, Susie had more in common with a 64 year old woman.
Sadly Susie was not the only friend MA lost to alzheimers in her 40s. Suddenly there were about 5 more friends showing signs of dementia by the time MA was 45. MA was changing too. She was quieter and losing communication skills. She needed less sleep at night and fell asleep during the day any time she sat longer than 5 minutes.
We had just adopted Samson when Susie became ill. We took Susie and MA with us to bring Samson home from TX. The trip was terribly hard on Susie. I'll never forget the phone call I had to make to Susie's mom. I had to tell Susie's mom as carefully as I could~"Something is terribly wrong with Susie."
I watched Susie's precious mom go through denial and grief. Susie's dad had just died from Rheumatoid Arthritis and medication side effects. She had no time to recover from that. Now Susie was ill. Daily we all questioned ourselves, how do we do this? How do we give Susie the best quality of life possible. I wondered, can I do this? Can I help my "buddy buddy" Susie die? (Susie called us her "Buddy-buddy")
I was also starting my 3 yr old Samson in pre-school. With our pre-school connections in the birth to three program, I was meeting lots of new mom's of children with DS. While these moms were filled with joy and hope. I was filled with sadness. I didn't dare share with them how Susie's life was ending. I didn't dare tell them what could happen in the future.
Because Susie's parents had her listed as a Ward of the State. (back then it was easier to keep services for the adults if they were state wards) We had to put a gastric feeding tube into Susie's tummy. The State mandated it. Susie's mom disagreed the State. Tom and I had no feelings either way about it. We had just had our daughter Molly (age 16) get a feeding tube, as her ataxia no longer allowed her to swallow. Molly's Dr told us not to do it! As Molly's parents we felt strongly we couldn't say no to a feeding tube, she was only 16 years old! But that was our daughter. We had to respect Susie's mom's wishes. Susie's mom thought she would suffer more with the feeding tube.
All I could think about was how many more days did I have with my Susie?
It took only one week before Susie had no idea the feeding tube was there. Each week she'd forget something new and remember something old. One of the biggest comforts to me, watching her, was when she'd jump/jerk upright in her reclining wheel chair, look past me, and say "OH! Hi! Dad!!" It made her so happy. Whether it was her dad there or an angel, I'll never know, but whoever it was, it made her so happy. It made her day! I was happy for her!
Susie and MA tried one of the "new" Alzheimers drugs together. We had to take them off of it. It made them agitated. After Susie died a Dr told me the Alzheimers drugs were dangerous. If stopped they could die within days. Maybe Susie's stopping the drug was not good for her. I'll never know. MA and Susie took it about 3 months. But quitting it didn't seem to phase MA. Eventually MA started Excellon, (I never remember how to spell it!). She's been on it for years. We know now we can't take her off of it. I do think it has slowed things down for her memory loss. One crazy side affect- She lost 50 pounds on it!! Which was great, but scared me! The Dr did not warn us! We ended up in the ER with MA when I decided that if she got any thinner she could die! Quickly they realized it was the Excellon.
So, I guess the point to my ramblings here, are as I stated, many of my friends, loves, acquaintances with DS, age and leave us/age too quickly. I just wasn't ready to lose them. I had Susie only 16 years. We were going to grow old together. I was only a year older than her.
So just as I finished teaching MA many of the skills she needed to live as independently as possible. Just as she was able to write her own checks, cook and clean and do laundry in the laundry room of her apartment without me. Just as she was commuting to work on the bus independently. She let me know, she couldn't do it any more. She was aging faster than I was, and now she needed a break. It was time to retire. She had to quit her job and start the Senior Program at age 45.
Yes, she was still pretty high functioning when she started the Senior Center. But now 10 years later, she looks older than she is and fits in with much older peers with differing disabilities.
I guess I need to accept that the biggest concern is not how I feel about it. The biggest concern is if she's happy. Living the life she wants. And I think you can tell by the picture above, she's not too worried about how things are going at all. :o) She brings so much joy to our lives!
Oh! how I LOVE her! :o)