When being ask to find a family story regarding Alzheimer’s I hesitated as my “family” story is a bit out of the normal.
56 years ago, our family was blessed with a true angel from heaven- my brother Thomas “Tommy”. He was small and Mom knew right away he was special. When she asked her doctor and was told Tommy had Down Syndrome, the doctor suggested that she and Dad should just find an institution and forget they had him. Well anyone who knew my mom, knew that this would never be an option. So our family embraced our new brother. We carried him, educated our small town about how special he was, and treated him like he was no different than any of us.
So where does Alzheimer’s relate to my 56-year-old brother who has Down Syndrome? Unfortunately, he has Alzheimer’s. He was diagnosed I think around 6 or 7 years ago. He went from the kindest loving man to one who had very aggressive behaviors. Hitting, spitting, pushing. He was in a family group home when the behaviors started. The couple who we entrusted with his care were fabulous. They kept me, who was Tommy’s legal guardian, as my parents had passed away, informed with what the situation was. After about a year of doctor’s visits, medication tweaking, they found that his volatile, and unpredictable behavior was too much for them to handle. So my family began the quest for a place for Tommy to go.
We knew each of his 4 siblings did not have the space or resources to house him. Besides, mom and dad did not want this for Tom or us. Thankfully with the help of his Social Worker, we found a home with Aurora Community Services and it is in our home town. With the help of staff, he has settled in well and is very well taken care of.
How has this changed us as a family?
Before Alzheimer’s, Tom was able to join our family functions. He loved coming to our home and had his own place at our dinner table and spot on the couch. He loved holding his nieces and nephews in his lap. He would light up when his brother Mike would make an appearance and want to wrestle like when they were young boys. He loved ice cream and hated chocolate cake. He would always cry when our baby sister would come and visit. He would pat my face and call me pretty.
After Alzheimer’s, he can no longer participate with family functions as too much noise or too many people confuse him, and he may go into one of his bad places. His last family Christmas spent with us, he threw a cup of coffee at my daughter-in-law who was holding my grandson. He has made attempts to hit me, and has made contact on several occasions. He can no longer go to Ventures, his “job”, anymore as he doesn’t remember why he is there and his behaviors are so unpredictable they can no longer keep him or his co-workers and friends safe.
When researching why Tommy with Down Syndrome would be dealt this disease, I uncovered that people with Down Syndrome also experience premature aging. They show physical changes related to aging about 20 to 30 years ahead of people of the same age in general population. As a result, Alzheimer’s is far more common in people with Down Syndrome then in the general population. People with Down Syndrome are often in their mid-40s early 50s when Alzheimer’s symptoms first appear. It also has something to do with that extra chromosome.
Tommy just celebrated his 56th birthday. I see him often. Some days I know he knows who I am. Especially when he calls me pretty. Some days he looks at me like a stranger. I know when to stay away from him when one of his moods pops up. I learned to duck quick. His home at Aurora is fabulous. They just roll with his disease. He is able to go to the movies, go on outings and be safe. One of their outings they took him to a Christmas program at the church my parents went to, Tommy charged right up the aisle and sat in the spot he used to sit in with Mom and Dad! So I know that “our” Tommy is still in there. He makes his appearance now and again.
So I walk for Tommy at the Walk to End Alzheimer’s. I walk for those with Down Syndrome who have yet to be diagnosed. I walk for their families. I walk for awareness.
This summer my twin sister and baby sister who now lives out east, spent a wonderful day with Tommy. We took him to his favorite restaurant in town. He had his favorite hamburger, French fries and a diet coke. We were laughing and just chatting. Tommy had a tears running down his cheeks as he looked at us. See, his baby sister had come to visit and his twin “pretty” sisters were sitting beside him. Our Tommy was there that day. Us families that are facing Alzheimer’s live for those days or moments. It makes our fight worth it.
Join the Fight for the First Survivor at Spooner’s Walk to End Alzheimer’s
SPOONER, WI- Friends, family and caregivers of those affected by Alzheimer’s disease invite the Spooner community to join the fight for the first survivor on Saturday, September 22 at Trinity Lutheran Church. Check-in for the Walk beings at 8:00 a.m., followed by a ceremony at 9:00 a.m. and either a one or three mile walk at 9:30 a.m.
The day also includes music, food and raffle prizes as well as music by Haylee Hershey and special guest speaker Sue Odegard. Larry Neste will emcee the day as the community comes together to support Alzheimer’s care and support programs, research advancement and advocacy efforts.
Of the Walks, Laurie Schill, Executive Director of the Greater Wisconsin Chapter says, “The money we raise for our Walks allows us to provide local care and support services to ease the burden on those living with Alzheimer’s and their caregivers. It also fuels our public policy efforts and allows us to advance critical research towards finding a cure. We are so appreciative of all of our Walkers and supporters because we truly couldn’t do what we do without your help.”
Community members can join as a participant, walk with a team or donate to this worthy cause by visiting alz.org/walk.
Spooner Health is a 25-bed critical access hospital with a wide range of services from emergency and inpatient care to outpatient therapy, surgery and diagnostic imaging. Spooner Health is dedicated to providing high quality healthcare with excellent service.