Nobody Ever Told Me: Lessons From a Dementia Caregiver

By Linda L. Osmundson

A 7am 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.

Nobody ever told me when I pledged, “’til death do us part,” I might become a caregiver. In 2012, Bob was diagnosed with Frontotemporal Dementia. Yet, later an MRI did not substantiate that diagnosis. I wasn’t prepared for caregiving. I researched online, read and joined a wonderful support group.

I Googled other forms of dementia. Bob drank heavily after he retired. Wernicke-Korsakoff Syndrome symptoms didn’t match his. He had a heart attack at age 48 and quadruple bypass at age 56. Vascular dementia symptoms didn’t quite fit either. Some symptoms fit Mixed dementia. He suffered no hallucinations, so I ruled out Dementia with Lewy bodies (DLB).

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. Most of the symptoms matched—lack of cognition and muscle control, memory loss, inability to talk clearly or recall proper words (aphasia) and choking.

I made lots of mistakes. I learned many lessons. Perhaps they will keep you from making the same mistakes.

• 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. After three minor accidents, the DMV required a driving test, which Bob failed. They took his license away.

• White lies are okay. It’s called Therapeutic Deception. When he asked where his mother is, say she’s gone to the store.

• Monitor your voice. A cheerful voice and countenance, even if you are angry, results in a positive response. Keep a smile on your face when your heart is breaking.

• Ignore most people’s advice. They mean well. Unless they have walked in your shoes, don’t let them tell you what to do. Just say, “Thank you.”

• Avoid the word “remember.” Don’t ask him to do something he can’t. Relate an incident or look at a photo album and see if it triggers a memory.

• Cater the conversation to a shared word. If he tries to talk and you don’t understand, pick one word you do understand and say anything using that word. It’s a meaningless conversation called Ping Ponging.

• Get help. Accept the offers of friends. Use agencies like Volunteers of America who provide two free hours of companionship a week. Hire in-home care, even if only a few hours. Use facilities like Elderhaus Adult Day Program or the many home care agencies.

• Take over the finances. Do this before a disaster occurs.

• Join a support group. It is essential.

• Use brain-challenging activities such as the books called Joggin’ Your Noggin’. Work large piece jigsaw puzzles (350 pieces or less), read children’s books, play matching the pictures card games and look at photo albums.

• Take care of yourself. You can’t care for someone if you become sick. When is it time to find professional help like a memory care facility? Everyone says you’ll know. In our case, it was prodding by our sons. They felt I’d aged ten years in one. Actually, when I told Bob I needed more sleep or I’d get sick and wouldn’t be able to care for him, he suggested he go to a facility. Of course, he meant assisted living. My sons and I decided his rapid decline might require a traumatic transfer to memory care later so why not admit him to memory care. He wasn’t happy at first, but adjusted.

• If your loved one becomes violent, abusive or aggressive, it is time for a facility. When you become ill or exhausted and feel you can’t do it anymore, it is time for a facility. When the loved one becomes extremely dependent, incontinent or physically disabled, it is time for a facility. Northern Colorado offers many choices. Research them and get your name on the waiting list.

• Experts suggest caregivers journal. I wrote all the things Bob liked to do and couldn’t do anymore. I listed how we adjusted those activities. The lists became a children’s picture book— Papa’s Changes, Dementia Through a Child’s Eyes. A granddaughter changes her interactions with her grandfather to keep love alive in their relationship and through his dementia journey.

• In addition to reading, enroll in the Powerful Tools for Caregivers 6-week course. Find more help through Alzheimers.org, Dementia Friendly Communities and/or the Office on Aging. Senior Access Points (LarimerSeniors.org, 970-498-7740) is a resource that answers all your questions or suggests someone who can.