What if it’s not Alzheimer’s?
That’s a question many people are left with after their loved one is diagnosed with this disease. That was the question I was left with after my husband Daniel received this diagnosis at age 58.
Being a Type A person and one with nearly 40 years of a health-care background, I had researched his symptoms and behavior and the Alzheimer’s diagnosis just didn’t seem to fit. So I pressed on, and on, from one neurologist to another, each giving him a different diagnosis.
A neuropsychologist evaluation suggested right hemisphere brain damage and I eventually insisted on a Cleveland Clinic referral, which led to the ultimate diagnosis of Frontotemporal Dementia, or FTD.
FTD isn’t one condition. It’s several disorders that affect the frontal and temporal lobes of the brain. It tends to be classified into either behavioral or language-related symptoms. This is determined by which areas of the brain are most affected. If there is a positive note in our journey, it’s that his was a language variant and not behavioral. Patients with the behavioral variant can become violent, hypersexual or cause financial devastation.
Each case is unique
The saying in our FTD community goes, “If you’ve met one FTD patient, you’ve met one FTD patient.” Every case is unique and symptoms often vary greatly. As the disease progresses and more areas of the brain are involved, patients can have more than one variant and even have other dementias such as Alzheimer’s or other diseases such as Parkinson’s or Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig’s disease).
Our path started with short term memory issues as well as a loss of some executive functions. This is probably why some physicians jumped straight to Alzheimer’s. But year after year marched on with no significant memory loss, but more cognitive functioning and speech decline. Once we had the correct diagnosis, it was somewhat a relief to know that the pieces finally fit, yet the prognosis was poor.
There is no known cure or even treatment for FTD. Treatments are given to help with anxiety or behavior management, but there is no medication yet to slow the progression. The average lifespan once symptoms begin is 7-13 years, however, some pass within a couple of years and some live beyond 20 years.
There are only about 60,000 cases of FTD in the United States, and probably many more, but they are often misdiagnosed as Alzheimer’s or mental illnesses. In our region, that means only a handful of cases.
Onset of FTD ranges from 21-80 years of age, but the majority occur between 45 and 64, thus another difference from Alzheimer’s, which generally occurs in the later years. We first noticed symptoms at age 56, and are currently in the ninth year.
As a caregiver, one of the biggest frustrations is the lack of support, both from the medical community and your personal relationships. Many doctors really don’t know a lot about FTD and most support groups are directly related to Alzheimer’s. I was fortunate to find an FTD Spouse group on Facebook, which has been a godsend in both information and support.
The other point of frustration is that close friends to my husband have pretty much disappeared. They’re uncomfortable around him and the obvious changes in his speech and cognitive abilities. As a spouse, it hurts to see friends whom he was always there to help and mentor just vanish. He still has a sense of humor, loves to talk to people, and wants some semblance of normalcy. Family is and has been great, but you can’t totally make up for those long friendships that are now gone.
There is a book that is helpful, called, “The Ambiguous Loss,” by Pauline Boss. She so eloquently talks about loss while your loved one is still present. We experience losses frequently, each causing a new work around or grief. We watch and journey through each new loss and try to figure out how to adjust and keep moving forward. Little things you take for granted like getting dressed, showering, brushing teeth, shaving, operating a remote, opening a car door, or pouring a drink, become new challenges. Turning off water faucets, closing cupboard or refrigerator doors become those little annoyances you face daily. Much more discouraging for our particular variant is the gradual loss of speech. The word searching becomes more difficult and I’ve learned to become the interpreter. But sometimes I just have to say, “I’ve got nothing,” when I have no idea what word he’s searching.
Families fight together
With any serious illness, and certainly with FTD, your whole family is in the battle.
He may be the one who took the bullet for our family, but we are all injured, grieving, and trying to find our way. So many people have good intentions and want to offer advice, but unless you live it 24/7, you have no idea what it’s like to journey along this path you never chose. You have no idea what tomorrow will bring, or how many tomorrows there will be.
Any serious illness is earth-shattering to the family and friends of the one affected. The shock often results in an outpouring of care and love. Especially in the case of cancer, everyone rallies around that person and their family offering help with meals, cleaning, benefits and prayers. However, if you mention the D-word, dementia, people tend to run the other way and scatter. Yes, there are those gems who stick by you and remain faithful and caring, but many will become distant and gradually disappear. If I could offer friends and family of someone with dementia a bit of advice, it’s this: Be there. Don’t ask IF you need anything. DO something. Visit, offer respite, laugh with them and be willing to cry with them if necessary. We need NOT to feel alone. We have to make many difficult and often unpopular decisions, and we need your love, understanding and support.
FTD is tough, but we are finding that we are tough, too.
We have grieved the loss of the future we had so carefully planned and hoped for, but we also want and need to make the most of the days that lie ahead. He’s still a husband, father, proud grandpa and friend, and deserves the most and best we can give him.
Mary Kay Verhoff retired from Mercy Health St. Rita’s after 40 years to take care of herhusband, Daniel. She was a radiologic technologist and the Director of the Women’s Wellness Center and Breast Imaging Services. She has a Bachelors Degree in Healthcare Administration and Women’s Health.