I always knew that I would take care of my sister, Jane, as I have no other siblings. She was born with Down’s syndrome [1] and was a happy child. My husband, Don, and I moved here to Vero Beach, Florida, to help take care of her as she and my dad grew older.
Jane always loved music, liked to dance, listened to her radio and played her organ. We had several cats and parakeets who liked her and seemed to sense that she was different. Spaghetti, baked beans, McDonald’s hamburgers and french fries were her food favorites. In Special Olympics [2], she enjoyed swimming and bowling events. She preferred staying inside and didn’t like to exercise. She could even be stubborn about going for a walk. Everyone thought she had a good sense of humor and a nice smile.
I became responsible for buying her clothes, taking her to doctor’s appointments, and meeting with her support coordinator. Jane had Down’s syndrome and was able to attend a local day program. She did simple chores around the house and was a cheerful and happy sister.
Gradually, more health issues developed. This was especially noticeable after a fall and physical therapy sessions. Signs of Alzheimer’s disease appeared, comprehension dimmed as physical limitations grew, and speech declined. As the only sibling and with my father in his 90’s, my father asked me to find a place for her, and I did. It worked until it closed a year later. A group home [3] was next, until she wasn’t able to keep up with younger housemates. A wonderful caring home in St Lucie County worked well, and I was able to visit her often. She was loved and well cared for there.
Signing up for programs was an important step: Social Security [4], Medicare, and Med-Waiver. Other programs included home health care, respite [5] and companion care. I learned from my experience that when special equipment is needed, it was necessary to check several local places. Walkers, wheelchairs, hospital beds, and other necessitates may be needed.
Finding local Doctors was a painstaking task. A general practitioner, dentist, and optician all need to be able to relate to your family members with special needs.
Legally, you need to be prepared for every possible scenario. If my husband and I died, which of our grown children in Florida would take care of Jane’s needs? What if parents are deceased or mentally “not competent”? I was fortunate that my husband was supportive of my added efforts for Jane. We were able to locate an elder law specialist lawyer named Marie Sullivan Conforti in Vero Beach. She answered our questions and gave us specific steps to take to protect Jane as she became older and more informed.
As much as we all dread the thought, end of life issues must be carefully decided upon. Which hospital is your choice for an emergency? Do you want life support equipment used? Do you physically have a legal D.N.R. (Do Not Resuscitate) [6] on file at the hospital, the Doctor’s office, and with you at all times? If not, then all life support machines will be used in an emergency. You will be asked: “do you have power of attorney to make medical decisions?” Are you able to make all the health care decisions or are other people involved?
When it comes down to it, you must do what is best for your loved one. If you do, then you will have no regrets and you will be at peace with your loved one’s passing.
P.S. Jane passed away in June, 2007, at the age of 60. She lived much longer than expected for a person with Down’s syndrome. I attribute her long life, in part, to the medical care and other support care that I was able to obtain for her.
*Evelyn serves on the board at Sun-Up Center, and works as a volunteer with their clients.*
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