"The lack of progress in Alzheimer's research is disheartening."
DEMENTIA - FROM THE HEART
Brigitte Briers (59) is no stranger to Alzheimer's disease. It affected her mother, father-in-law and her own father. For Anima, she shares her experiences with her father's disease and its impact on their lives. Her father was first taken to the neurologist on Dec. 8, 2022, when he was 86 years old. Initially diagnosed with depression, Brigitte soon began to notice that there was more to it.
When did you first suspect that your father was suffering from Alzheimer's?
I began to notice that he had difficulty with everyday tasks, such as operating the television, washing machine and his cell phone. He slept during the day, ate little and often forgot to eat. He also lost interest in activities, reacted more slowly and had minor accidents, such as driving into a high curb without telling anyone afterwards. He also forgot his wallet at the store and could no longer fill up on his own or remember his PIN.
How has Alzheimer's affected your father's life?
My father was always busy, especially in the garden, but that was no longer possible. He spent whole days in his couch, doing nothing. It was heartbreaking to see. He also couldn't watch television because he no longer knew which button on the remote to press to turn it on.
As much as I repeated that I wanted to help him, my father did not want to be a burden to me. He also withdrew more and more from others because he sometimes forgot who they were. It pained him whenever he was asked a question he couldn't answer right away.
What treatments has your father received to alleviate his symptoms?
He was prescribed Exelon patches, but this seemed to worsen his symptoms rather than help him. He forgot, for example, that he had put food on the stove, resulting in dangerous situations. My father, anxious and walking through the kitchen in socks, had no idea how to resolve this. He also accidentally shut off the electricity and heating once in winter, after which he called me in a panic. I found little support from the neurologist after these incidents.
"Looking at old photos together, taking little walks and hanging family photos in his room did bring some comfort."
How did you find support for yourself and your father during his illness?
With the exception of my family and friends, I felt little support. From acquaintances I was often told minimizing statements such as, "I also sometimes forget..." I didn't find that very understanding. After several dangerous incidents, I contacted the neurologist, but received no help. The staff member even refused to connect me. When I suggested I stop taking Exelon, she replied, "If you feel you need to, you should." I had to wait until the next appointment, six months later.
The staff at Cecilia residential care center did try very hard. Visits to my father, looking at old pictures together, taking little walks and hanging family pictures in his room did bring some comfort.
Are there memories of your father that you cherish?
The moments I shared with him alone are invaluable to me. Our bond was strong and close; we were like two hands in one, especially since all we had left was each other. My mother and brother had died before. Upon entering his room, I often received a hug, something I enjoyed immensely.
How has your experience with Alzheimer's affected your view of medical treatments?
None of the treatments proved effective. At the hospital, I observed distressing conditions; for example, my father had fallen and was covered in bruises. In the first residential care center where my father stayed, there was also a shortage of staff and patients were often left to fend for themselves, despite the red lights on their doors. Fortunately, the care at Cecilia residential care center was much better.
In addition, health care is extremely expensive. Many people, including my father, have pensions that are not sufficient to pay for a stay in an assisted living facility. Their savings are rapidly disappearing. I even had to sell our childhood home.
Significantly more research is being done on cancer, for example, than on Alzheimer's. The lack of progress in Alzheimer's research, compared to that of other diseases, is discouraging.
"Patience and time are invaluable in Alzheimer's, but this is a challenge in our hurried society."
How do you think society can better support Alzheimer's?
The disease is often underestimated because patients can still look good while their cognitive abilities decline. People with Alzheimer's require constant care even when they do not ask for help.
It is crucial to better educate the public about the challenges of Alzheimer's. A snapshot of their situation says little; only when you spend a long time with them do you understand the obstacles they face. Perhaps awareness campaigns through the mutual insurance company, television programs, newspaper articles and lectures could help? It is also important for people to be aware of the legal aspects of the disease.
Are there any important lessons you learned while taking care of your father?
Patience and time are invaluable with Alzheimer's, but this is often a challenge in our hurried society. Avoiding anger toward someone with Alzheimer's is crucial, as it only causes confusion and exacerbates the situation. Alzheimer's is an unpredictable disease that requires better diagnoses and treatments.
About two weeks after this interview, Brigitte had to say goodbye to her father. She advocates for more awareness and support for families dealing with this devastating disease. We thank her for her testimony and search for better treatments for Alzheimer's disease.
The parting had long since begun,
In memory of Maurice Briers
your words were sometimes made up.
Until the confusion of thoughts,
got you in trouble.
And your world ever narrowed
until this silent and gentle end.