Nobody ever told me: Lessons from a dementia care partner
BY LINDA L. OSMUNDSON
A 7 am call woke me. “Bob had a fall and didn’t call for help. He’s okay.” My husband resided at a memory care facility. He fell often, i.e. one of the reasons for his admittance.
At my noon visit, I showed him his alert button and reminded him to use it. He responded in the clearest voice I’d heard in months, “You forgot, I have dementia.”
Believe me, I hadn’t forgotten! Bob was diagnosed with Frontotemporal dementia (see further information below) n 2012, yet an MRI showed few signs of the disease. Unfortunately, dementia can only be truly diagnosed with an autopsy.
Suddenly, I was thrown into care partnering with no preparation. It reminded me of the little training I received for parenting. I read lots of books about having a baby. AND, our son came out backward – breech. Would my dementia research turn up similar results?
I Googled other forms of dementia besides Alzheimer’s. Bob drank heavily, especially after he retired. I thought perhaps he had Wernicke-Korsakoff Syndrome. Not many of the symptoms matched him.
He had a quadruple heart bypass at the age of 56. Perhaps he had Vascular dementia. Those symptoms didn’t quite fit either.
Many people suffer from Mixed dementia. He could fit several symptoms from various dementias. Not very encouraging.
I ruled out Dementia with Lewy bodies (DLB) since he suffered no hallucinations.
After a neurologist visit, the doctor regretted his lack of a real diagnosis. That night he called and told me to Google “PSP,” the acronym for Progressive Supranuclear Palsy. It is a Frontotemporal dementia sometimes connected to Parkinson’s disease, or considered a brain disease. Most of the symptoms matched – lack of cognition and muscle control, memory loss, inability to talk clearly or recall the proper words and choking. So, my care partnering commenced.
“After three car accidents, the state required he take a driving test.”
Bob refused to walk with a cane, stay off the stairs or quit driving. He fell often, thankfully not on the stairs. After three car accidents, the state required he take a driving test. No one was hurt in the accidents, but totaled one of our cars. Of course, he failed the test. I’d already been doing all the driving when we traveled together. He only drove for a few errands to the grocery store, fitness center and drugstore – all within a three-mile radius. Still, a revoked driver’s license hit him hard. I now drove him wherever he wanted to go. I quit all my social activities to care for him.
Some lessons I learned
- Avoid arguments. Dementia leaves a patient with little age-appropriate reasoning ability.
- Rather than argue, distract. Point out something that takes his mind away from the present situation.
- Let someone else be the bad guy, ie, a license was taken away.
- White lies are okay. Make it easy on yourself.
- Monitor your voice. A cheerful voice and countenance, even if you are angry, results in a positive response.
- Ignore most people’s advice. Unless they have walked in your shoes, don’t let them tell you what to do.
- Avoid the word “remember.” Instead, relate an incident or look at a photograph and see if memory is triggered.
- If he tries to talk and you don’t understand, pick one word you do understand and say anything using that word.
- Ask a few open-ended questions. Instead, word the question so it requires a definite answer.
- Get help. Hire in-home care, even if only a few hours, to relieve yourself of 24/7 care.
- Take over the finances before a disaster occurs.
- Join a support group. It is essential.
Mind challenging activities
Once Bob could no longer read, I purchased “Joggin’ Your Noggin” books. He and the in-home caregiver (Morgan) read them and answered all the questions.
I bought large piece puzzles and put them together first. I collected all the edges and placed them in one baggie. Then divided the puzzle into four sections and stored each in separate baggies. He refused to work them with me but loved doing them with Morgan.
Children’s books offered information on a level Bob could understand. We read together.
Decks of cards with pictures to match provided another challenging activity. Games on an iPod or tablet granted more challenges if the person can be trained to use the tablet.
Our photo albums reminded both of us of good times from the past. For Bob’s Christmas gift, I gave each son an album to fill with pictures of his family. My husband loved to look at them.
Time to choose professional care?
I barely slept for two years.
“Mom,” said our youngest son, “you’ve aged ten years in one. I know you believe ‘until death us do part’ but you’re going to make yourself sick and not be able to care for Dad.” He researched several facilities and finally insisted we visit them together with Bob. Without Bob’s knowledge, I put a deposit at one.
After an awful night of no sleep, I explained that if I didn’t get more sleep, I’d end up sick and then who would take care of him. Bob chose to move to a care facility. He wanted to move immediately. He picked out pictures, furniture and suggested he move the next Saturday. Not possible, of course. The boys and I chose memory care rather than assisted living since his decline seemed fast. We admitted him the day before my birthday, November 2016.
Responsibilities are forever
Even when the loved one is in professional care a care partner’s responsibilities continue. You must serve as an advocate. No facility is perfect. Turnover is rampant to the detriment of residents. They need consistency. That said, all the memory care staff loved Bob. I am thankful he received better care than I could give him.
However, guilt consumed me. A support group relieved that guilt – I wasn’t the only one with negative feelings and worries. The group allowed me to vent, offered sound advice and helpful information about palliative/hospice care, agencies for the aging and available financial help through organizations or VA.
I muddled through parenthood with little training. My boys are successful, caring, good parents. I used the lessons I learned in a support group and I muddled through care partnering. It worked for us.
What about me? One of the support group’s best pieces of advice is “Take care of yourself.” I tried. Besides daily visits with Bob, I returned to a few of my previous activities. Then on September 15, 2018, Bob passed away after the longest, hardest week I’ve ever lived.
My years of grief as I watched my husband decline prepared me for life without him. But the grief never goes away. It attacks at the strangest moments – a song on the radio, a favorite TV program, a sentence in a book and especially at church. But I’ll get through it with the help of God, family, and friends.
ABOUT THE AUTHOR – LINDA OSMUNDSON
To help other care partners, Linda Osmundson, an award-winning children’s book author is publishing a picture book called Papa’s Changes. A granddaughter copes with her grandfather’s decline by adjusting her activities with him and keeping their love alive. The book will be released in the fall, 2019. Watch for pre-orders on Amazon.
What is Frontotemporal Degeneration (FTD)?
FTD is the most common form of dementia for people under age 60.
It represents a group of brain disorders caused by degeneration of the frontal and/or temporal lobes of the brain. FTD is also frequently referred to as frontotemporal dementia, frontotemporal lobar degeneration (FTLD), or Pick’s disease.
How does FTD differ from Alzheimer’s disease?
FTD brings a gradual, progressive decline in behavior, language or movement, with memory usually relatively preserved.
It typically strikes younger.
Although age of onset ranges from 21 to 80, the majority of FTD cases occur between 45 and 64. Therefore, FTD has a substantially greater impact on work, family, and the economic burden faced by families than Alzheimer’s.
It is less common and still far less known.
FTD’s estimated U.S. prevalence is around 60,000 cases (Knopman 2011, CurePSP), and many in the medical community remain unfamiliar with it. FTD is frequently misdiagnosed as Alzheimer’s, depression, Parkinson’s disease, or a psychiatric condition. On average, it currently takes 3.6 years to get an accurate diagnosis.
How does FTD progress?
The progression of symptoms – in behavior, language, and/or movement – varies by individual, but FTD brings an inevitable decline in functioning. The length of progression varies from 2 to over 20 years.
As the disease progresses, the person affected may experience increasing difficulty in planning or organizing activities. They may behave inappropriately in social or work settings, and have trouble communicating with others, or relating to loved ones.
Over time, FTD predisposes an individual to physical complications such as pneumonia, infection, or injury from a fall. Average life expectancy is 7 to 13 years after the start of symptoms (Onyike and Diehl-Schmid, 2013). The most common cause of death is pneumonia.
Are there options for treatment?
Today, there is no cure for FTD. Unfortunately, no current treatments slow or stop the progression of the disease. However, if you or a family member or loved one are affected, there are important steps that you can take to preserve and maximize quality of life. A growing number of interventions– not limited to medication – can help with managing FTD symptoms.
It is important for you and your care partner to identify a team of experts who can help with coordinating care and with the legal, financial and emotional challenges brought on by this disease.
AFTD is here to help
Don’t face an FTD journey alone. AFTD offers information, resources and ways to connect to others who understand.
If you have questions that it would be easier to discuss, please contact our HelpLine at 866-507-7222, or by email at firstname.lastname@example.org. Find out more by subscribing to email updates. Both in-person and online support groups for people with FTD and their care partners, and a variety of resources and publications can also offer crucial help for every stage of the FTD journey.