This story was written by Janet Miller, a respite care associate at the Munroe-Meyer Institute.
My daughter, Jennifer, is a lovely 40-year-old woman with Down syndrome.
For many years, she excelled in both school and employment. She was fortunate to have had many opportunities to participate in regular education classes. Additionally, she began her work career at age 17 at a Wendy’s restaurant –- her job choice was due in part to her interest in Dave Thomas and adoption.
Jennifer was employed at Wendy’s for more 14 years, commuting by using public transportation. She also volunteered for Mercy Care Center until it losed, taking a beverage cart to patient rooms.
Jennifer was very proud of her accomplishments and took great pride in her work. She worked hard to become Employee of the Month!
When Jennifer reached her early 30s, we started witnessing changes in her behavior. She was diagnosed with obsessive/compulsive disorder, and her obsessions escalated so severely that she was admitted for a weeklong evaluation in a psychiatric ward. These behavioral changes eventually cost her job, the beginning of a spiral that is still affecting our family.
Her obsessive behaviors forced us to seek residential options for her outside of Omaha, hoping to break the self-destructive cycle she was trapped in. She did spend a few years doing significantly better in a small town just outside of Omaha.
As time went on, however, additional, more aggressive behaviors began to surface, matched with increasing levels of depression. Physicians started her on a series of mood-altering medications, some of which we believe were damaging to her.
Her skills in daily living began to decline, as well as her interest in personal hygiene. It became obvious that professionals needed to start tracking Jennifer’s skill declines. This did not happen, however, and my husband and I determined that Jennifer needed to return to Omaha to seek additional medical attention, as well as a diagnosis to determine the cause of these frightening changes.
Our first step was to schedule an appointment for a geriatric evaluation to determine Jennifer’s condition. The process was frustrating, time-consuming and discouraging — many places only wanted to deal with people over the age of 55.
After the initial evaluation, MRI and neurological testing, we found Jennifer did, in fact, have early onset Alzheimer’s. The onset, we were told, was probably when she first started experiencing the severe behavioral changes some six years prior to diagnosis.
We explored whether Jennifer could participate locally in any clinical trials on persons with Down syndrome experiencing Alzheimer’s disease. But we found none, and again, most places contacted did not work with anyone under the age of 55. Due to the limited number of individuals with Down syndrome diagnosed with early onset Alzheimer’s, it has been difficult to meet other families going through this long and painful journey.
Since Jennifer’s diagnosis, we have experienced several setbacks in residential services for her. She was placed in one setting that claimed to be able to care for her unique behavioral needs, but this fell apart in a very short time. At the next place, where she stayed about a year, staff members believed that changes in her skills (such as falling and incontinence) were “behaviors” and not conditions related to having Alzheimer’s disease. They also showed very little concern of Jennifer’s increased need for sleeping, which for her was unusual enough to alarm us. So another change needed to be made, and we chose to move Jennifer into an extended family home. She had been their only 17 days when the family teachers reached out to us with their own concerns about the amount of time that Jennifer was sleeping and their inability to wake her.
Jennifer was admitted to the hospital on Sept. 23, 2016, for a four-day stay during which she had no real idea of what was happening to her. She returned home only to be back in the hospital in a day or two. This time, the physicians ran a two-day EEG test that showed significant brain abnormalities and seizure activity (the non-convulsive type). When seizure medications were started, she began to show significant side effects — we are currently beginning her fourth seizure medication. Due to these medication issues, Jennifer was either in a hospital or rehabilitation care facility since Sept. 23. Jennifer was no longer able to return to her extended family home and since January, 2017 has been residing in the medical service unit offered through Mosaic, one of the developmental disabilities provider agencies.
I want to encourage family caregivers to seek early diagnosis to determine causes of behavioral changes, especially for individuals with Down syndrome. While early onset Alzheimer’s disorder diagnoses are relatively rare, Alzheimer’s has been found to be more prevalent in individuals with Down syndrome.
As a family caregiver of a person with Alzheimer’s disease, I can attest to the great deal of stress this can cause as we ride this roller coaster ride. This stress can lead to our own physical decline and emotional exhaustion. It is difficult, but imperative that we keep our own health in check and seek out support. If you are a family caregiver in this situation or know of someone who is, they can contact Respite Across the Lifespan at 402-559-5732 to get assistance in locating a respite care provider to offer short-term relief for the family caregiver.
Janet, who has become an affiliate trainer in the dementia care curriculum for persons with intellectual and developmental disabilities, will be starting an education/support group for family caregivers who have adult loved ones with intellectual disabilities, such as Down syndrome. This group will be for those who suspect their loved ones may be on the journey into Alzheimer’s or other types of dementia or those who already have received the diagnosis. For information on the support group, contact Janet at 402-639-8037 or at firstname.lastname@example.org.