Grace and Hope in the End Stages of Dementia

Reading Time: 5 minutes

For caregivers, the ending stages of dementia are difficult, disturbing, and often highly emotional. In this article I will share caregiving experience with my dad as he approached the end of life. Included are excerpts from my book, “Dancing With Lewy: A Father Daughter Dance Before and After Lewy Body Dementia Came to Live With Us” published by Morgan James Publishing.

Is there Hope?

Yes and no. At the present time there is no cure for dementia; it is always fatal. There is hope for a cure, and every step in that direction is worth celebrating. However, there are numerous types of dementia, and progress is slow. For now we can find hope in new treatments for dementia-related symptoms.

There is hope because people with dementia are living human beings. You can bring joy to them, even when their minds are fading. Review my earlier talk, “Bringing Light to Dementia with Music and Art” for ideas on how music can bring back memories and stimulate positive emotions.

We can find ways to stimulate all the senses: smell, touch, taste, hearing, and seeing, as much as possible. Experiences such as rubbing a loved one’s hands with lotion, combing their hair, or giving them tastes of a favorite treat (as long as they will not choke) bring connections. Videos or scrapbooks may jog a memory. Be deliberate when visiting your loved one, think about their capabilties, not their disabilities.

End of Life

How prepared are you to walk with someone through the end of life? In “Dancing With Lewy” I describe one experience that prepared me when both my parents approached the end.

“Several years before my parents needed…care, I went to graduate school. One night the topic in my ethics class was end of life. Our professor showed three different movie clips, and we discussed the various scenarios.”

I do not have time to describe all those scenarios here, or all the end-of-life decisions we dealt with. You can read them in the book. I will share a couple of those questions we encountered with dad. I am also giving our response (in italics), but every situation is different, and you need to approach decisions in light of your loved one’s beliefs, the stage of dementia, and medical advice.

I wrote:

“We had the proper paperwork in place to allow us to make end of life decisions for Dad. But end-of-life decisions are not as simple as ’Do we pull the plug or keep him/her going?’ We progressively had to make decisions:

• Do we treat skin injuries? Of course.
• Should we continue his antidepressants? His blood pressure pills? Thyroid meds? We eventually weaned him off most medications.
• Should they give him antibiotics? We decided they should only give him antibiotics for comfort care, such as for eye infections or bladder infections (common in the elderly). We would withhold antibiotics for any sign of pneumonia (also very common, especially when the elderly aspirate.)
• Would he be resuscitated with CPR? Intubation? Absolutely not, he was DNR (do not resuscitate).”

There were more questions, more discussions, more hoping and praying we were maing the correct decisions. Fortunately the trained nursing home staff walked us through those tough questions. I advise you to engage in these conversations with your loved one, or with co- caregivers as soon as possible, before a crisis strikes.

I talk about our last Christmas with dad in my book. He was far along the path of dementia, but he demonstrated emotion when he saw family members, making us believe he remembered us. (With his type of dementia, Lewy body, they believe patients can retain memory, unlike many Alzheimer’s patients.)

After he passed away, I thought, “At least we were there, and Dad—what was left of him—was still with us. A warm, breathing dad.”

A Cold Winter Day

Dad died on a cold winter day that next January. It was a relief, first his suffering ended, and as a Christian I knew he is in a better place. It was also heartbreaking, why would my smart, loving dad succumb to dementia? In “Dancing With Lewy” I record my last conversation with dad — at his coffin. After he had been gone six years, I could finally write about our father-daughter-Lewy body dance.

Concluding Thoughts

After the storyline in “Dancing With Lewy” concluded, I added advice and tips. I hope these are helpful for caregivers finding themselves caring for a person with dementia.

Today I advise you to hold your loved ones near, whatever state of mind they are experiencing. If you have a family member or friend in the final stages of dementia, remember they are a living, breathing human being. You can be the light to bring grace and hope to their final stages.