What if I don’t have Alzheimer’s disease?
It is a problem left to many after their loved ones have been diagnosed with the disease. That was the question left to me after my husband Daniel received this diagnosis at the age of 58.
A Type A person with nearly 40 years of medical experience, I investigated his symptoms and behavior, but the diagnosis of Alzheimer’s disease did not seem to be appropriate. So I kept repeating giving different diagnoses from one neurologist to another.
A neuropsychologist’s assessment suggested brain damage in the right hemisphere, and I finally insisted on a referral to the Cleveland Clinic, which led to the final diagnosis of frontotemporal dementia (FTD).
FTD is not a condition. There are several disorders that affect the frontal and temporal lobes of the brain. It tends to fall into either behavioral or language-related symptoms. This depends on which areas of the brain are most affected. If there is a positive note on our journey, it is that he was a variant of language, not action. Patients with behavioral changes can cause violence, hypersexuality, or financial devastation.
Each case is unique
In our FTD community, there is a saying, “If you meet one FTD patient, you meet one FTD patient.” All cases are unique and the symptoms are often very different. As the disease progresses and more areas of the brain are involved, the patient may have multiple mutations, other dementias such as Alzheimer’s disease, or Parkinson’s disease or amyotrophic lateral sclerosis (ALS). Or you may even have other illnesses such as (Lugeric’s disease).
Our path began with short-term memory problems and some executive function loss. This is probably why some doctors went straight to Alzheimer’s disease. However, year after year, there was no significant memory loss and more cognitive function and speech progressed without deterioration. After making the correct diagnosis, I was a little relieved to know that the piece finally fit, but the prognosis was poor.
There is no known or even cure for FTD. Treatment is given to help manage anxiety and behavior, but there are still no drugs to slow the progression. Life expectancy is 7-13 years after the onset of symptoms, but some live within a few years and others survive more than 20 years.
There are only about 60,000 cases of FTD in the United States, and perhaps more, but they are often misdiagnosed as Alzheimer’s disease or mental illness. In our area, that means only a handful of cases.
The onset of FTD ranges from 21 to 80 years of age, but most occur between the ages of 45 and 64, making it different from Alzheimer’s disease, which generally occurs later in life. I first noticed the symptoms at the age of 56 and am now in my ninth year.
Ask for support
One of the biggest complaints as a caregiver is the lack of support from both the medical community and your personal relationship. Many doctors are not very familiar with FTD and most support groups are directly related to Alzheimer’s disease. I was fortunate to find the FTD Pouse group on Facebook. This was a heavenly blessing in both information and support.
Another point of frustration is that my husband’s close friends have almost disappeared. They are unpleasant around him and are a clear change in his speech and cognitive abilities. As a spouse, it’s painful to see a friend he’s always come to help and see the mentor disappear. He still has a good sense of humor, loves talking to people and wants to feel normal. The family is great, but the long friendships that are now gone cannot be completely compensated.
There is a useful book called “The Ambiguous Loss” by Pauline Boss. She speaks eloquently about the loss while your loved one is still there. We often experience losses, each of which causes new workarounds and sorrows. We monitor each new loss, travel, coordinate and try to find ways to keep moving forward. Getting dressed, taking a shower, brushing your teeth, shaving, operating a remote control, opening a car door, pouring a drink, and so on are new challenges. Turning off the taps and closing the cupboard and fridge doors can be a small hassle you face every day. Much more discouraging for our particular variant is the gradual loss of speech. I learned that word search became difficult and I became an interpreter. But when he doesn’t know which word he’s searching for, he may have to say “I don’t have anything.”
Family fight together
In the case of a serious illness, and certainly in the case of FTD, your entire family is in the fight.
He may have taken the bullet for our family, but we are all injured, sad, and trying to find our way. Many people want to give good faith advice, but unless they live 24/7, they don’t know what it’s like to travel this unselected road. You don’t know what tomorrow will bring or how many tomorrows there will be.
Serious illness can have a devastating impact on the affected family and friends. Shock often results in an overflow of care and love. Especially in the case of cancer, everyone gathers around the person and their family to help with food, cleaning, benefits and prayer. But when it comes to D. Ward, dementia, people tend to run and scatter in the opposite direction. Yes, there are gems that stick to you, are loyal and compassionate, but many are far away and gradually disappear. If you can give some advice to friends and family of people with dementia: Don’t ask if you need anything. Do something. Visit, provide rest, laugh with them, and cry with them if necessary. We don’t have to feel lonely. We have to make many difficult and often unpopular decisions, and we need your love, understanding and support.
FTD is tough, but we also found it tough.
I planned carefully and saddened the loss of the future I expected, but I also want to make the most of my future days. He is still a husband, a father, a proud grandpa, a friend, and the best value we can give him.
Daniel Verhoff Verhoff is adjacent to grandchildren Lauren and Levi Martz, Maddox and Sebastian Boughan.
Mary Kay Verhoff retired from Mercy Health St. Rita’s 40 years later to take care of her husband Daniel. She was a radiologist and director of the Women’s Wellness Center and Breast Imaging Services. She has a bachelor’s degree in Health Care Management and Women’s Health.
Maybe it’s not Alzheimer’s disease-Lima News
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