Growing up, Marian Allen was bright and bubbly. She had a love for Elvis Presley, holding babies and traveling. She went out of her way to introduce herself to people, and was always a big fan of hugs. Marian has Down syndrome, and a few years ago, she was diagnosed with Alzheimer’s disease. Her older sister Bunky is her long-distance caregiver.
Bunky has lived in Seattle since college, while Marian remains in Pittsburgh, where the sisters grew up. “I have typically traveled back to Pittsburgh a couple of times per year; more often since our father passed away,” said Bunky. “She gets a postcard from every city I visit for work, all holidays and we connect weekly by phone or FaceTime, sometimes more.”
Bunky said finding out her sister had dementia was “Hard. It is still very hard.” Growing up, the sisters shared a bedroom until Bunky was around age 12. “I did not understand what was wrong with Marian for a long time; I just knew she was different,” Bunky said of her sister’s Down syndrome.
One of Bunky’s favorite memories growing up is when her sister first learned to tie her shoes.
“A little event, but big in my memory, was when she was about 4 or 5 and Marian tied her shoes for the first time. Dad had been attempting to teach her for several months with little success. One Saturday, to the entire family’s amazement and audible excitement, she leaned over and accomplished the task without prompting. The family’s enthusiastic response set her off in an animated display waving her arms and laughing with joy,” she remembers.
When Marian, who is now 66, was diagnosed with Alzheimer’s, “we did not know the probability relationship between Down syndrome and Alzheimer’s. If we had been more aware, we may have been better prepared. Even though she has far exceeded the statistics, we know we still have much to learn,” Bunky said.
According to the National Down Syndrome Society, people with Down syndrome typically develop dementia at a younger age — 30 percent in their 50s and up to 50 percent by their 60s. The same extra chromosome that causes Down syndrome provides an “extra helping” of plaques that build up and damage the brain. Dementia may also progress more quickly for individuals with Down syndrome.
Since both of their parents and their brother have passed away, Bunky is on her own when it comes to navigating her sister’s care. Bunky said finding a place for Marian to live has been especially challenging.
“The former housing program, with which she was associated for almost 30 years, was trying to expel Marian in a rather unsympathetic manner,” recalled Bunky. “They would have her moved by ambulance to the hospital and then refuse to take her back when there was no medical reason for her to stay.”
As her dementia progressed, Bunky said Marian “was in and out of the hospital several times, psychiatric ward once, a change in houses, moves to two nursing facilities—all over a six-month period before we finally got her settled in her current location. So many changes did not help Marian,” Bunky said.
After contacting roughly 60 facilities, they finally found one that would accept Marian. She has now been in her current nursing facility for almost a year. “The nursing facility seems to be giving her good care and she seems to be gradually becoming more comfortable with the staff and circumstances,” reports Bunky.
Bunky says being a long-distance caregiver is “difficult and frustrating” because “I believe she feels abandoned and I feel absolute guilt.” Fortunately, Bunky often travels for work and that has allowed her the opportunity to continue visiting Marian with some regularity.
Still, keeping in touch long distance has become more difficult. While Marian used to be just a phone call away, she now seems to have little interest in talking on the phone. “Direct communication has become more difficult,” said Bunky. “Now, I primarily get updates from nursing staff, hospice staff and one of the former caregivers from her house.”
Bunky has three pieces of advice for people in a similar situation to hers:
- Think about the long-term. Your loved one may outlive you and your “Plan A.” Make sure they are taken care of, even after you’re gone.
- Educate yourself about conditions. Don’t blindly trust caregivers or even doctors to make the right decisions in dealing with Down Syndrome. Take the time to do your research.
- Be prepared for personality changes. For now, there are good days and bad.
If you need practical advice or want someone to talk to, the Alzheimer’s Association Washington State Chapter started a free support group for caregivers of people living with Down syndrome and dementia. To learn more about this support group or for information about how to join, contact Hannah Wishnek at (206) 529-3888.