Dementia is not a journey to be taken alone’

In talking recently with Kim Martin, who writes a column for The Durango Herald about her Alzheimer’s diagnosis and experiences, she was incessantly worried for her husband, Steve. He will be giving up his life. Will he resent her? He will have to change his life to care for her. What will he miss out on? Perseverating.

My perspective is that Steve is responsible for Steve. But Kim doesn’t think he will do that and she needs to take care of him.

She does not want to burden him and cause him to suffer.

Have I been burdened as a caregiver for the last eight years? Undeniably. Would I trade the experience? Yes. Have I grieved? Daily.

Will my husband, Jim, die of this disease? It is life-ending. What does the future look like? Unknown.

After eight years, we have traveled far into the journey. From the point where I couldn’t accept the diagnosis, being thankful for COVID-19 so the mask covered my 24/7 weeping, leaving my beloved Durango to live with our son’s family in Denver in summer and winter in Phoenix, and selling our home this year. Lots of change. Much of it forced.

Remember change theory and that change is a process. Denial starts, then adaptation starts, and finally, acceptance and moving forward. Caregiving follows a similar process. I have come to the point of acceptance and finding the other side. Some changes: The relationship with my children has deepened and taken on new dimensions.

I will be part of my grandchildren’s lives rather than a distant observer.

I have met people like Kim, whom I would not have met. I love her.

My relationship with my husband is more loving and appreciative.

I can run an impact tool. Thankful that garage mess and other clutter is gone.

My sense of humor has honed itself into a wicked sense of humor.

So weigh the difference: Is it more gratifying to chair the Durango Dementia Coalition and see positive changes in the community or traveling to Europe or Iceland or Japan?

I vote for the former. Would I like to repeat the experience? No. It is still hard work.

Each person’s journey is different. This is just my experience. I do know that dementia is not a journey to be taken alone. The Durango Dementia Coalition is working hard to “connect the dots” for those with dementia and their loved ones.

If you are a caregiver, person with dementia, family member or a friend of someone with dementia and have not connected with us, email durangodementiacoalition@ gmail.com. You will be informed of DDC activities through a newsletter and, if you wish, connected through a phone call.

Pat Demarest is a Durango ex-pat and caregiver who hopes to come home one day.

Pat Demarest