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Nobody Ever Told Me: Lessons from a Dementia Care Partner

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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 in 2012, yet an MRI showed few signs of the disease. Unfortunately, dementia can only be truly diagnosed with an autopsy.

All of a sudden 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 backwards – 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 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.

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 the driving test. The accidents hurt no one 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

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 grant 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 we 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 loves Bob. I am thankful he’s received better care than I could give him.

However, guilt consumes the care partner. A support group relieves that guilt – you aren’t the only one with negative feelings and worries. The group allows you to vent, offers 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 muddle through care partnering. So far it works for us.

What about me? One of the support group’s best pieces of advice is “Take care of yourself.” I’m trying.

The End of the Journey

My husband, Bob, passed away on September 15, 2018, nine days after his 80th birthday.

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