Insights From a Wife Whose Husband Has Dementia

Posted by Donna Mae Scheib on August 04, 2017

Insights From a Wife Whose Husband Has Dementia

Last month, I attended a meeting for creating a dementia friendly community for Pierce County, Washington. At this event, I met two wonderful people who kindly shared their experiences as a married couple facing a diagnosis of dementia.  This is a two-part blog to share their stories.

This first blog is about Juanita and her journey after her husband was diagnosed with dementia. This is her experience in her own words:

“As a caregiver, I would like a dementia friendly community to understand the daily personal challenges and sacrifices that are required of someone whose loved one has dementia.

Shortly after Bob’s diagnosis 7 years ago, I attended my first Caregiver’s Conference, where I learned a long list of “do’s and don’ts” that would be necessary to interact with a person with dementia.  

• Always be patient
• Stay calm
• Use positive body language
• Use a relaxed tone of voice
• Don’t argue

It was then that I reluctantly realized that I would have to change my entire personality and become a saint.

I also learned that this disease will gradually take over my entire life almost as completely as it will take over the life of the person with dementia.  I will have to give up many of my interests and activities while I focus on caring for my loved one 24/7.  Recently, my asking Bob to give up his driving has been a particularly difficult and painful adjustment for both of us.  My stress level will gradually increase as I lose my independence and my role changes from partner to parent.

This comes at a time when many people of my generation and older are experiencing a decrease in energy, financial resources, and an increase in physical ailments and challenges.  We also strongly resist bothering our friends and families by asking for help.  Therefore, it is not helpful to tell a caregiver “let me know if I can do anything to help.”  Rather offer a specific kind of help at a mutually agreed upon time.  Alone time is something caregivers highly prize but rarely have.

I would like to leave you with 3 observations that would permeate a dementia friendly community:

1. Many people tell me that Bob doesn’t look like he has Alzheimer’s.  People with dementia usually retain their social skills for a long time.  So, remember that the charming person with dementia that you see in public is often very different from the person that I am dealing with at home.
2. Everyone asks me how Bob is doing.  Almost no one asks me how I am doing.
3. Anything that you can do to enhance the quality of life of the caregiver will directly enhance the quality of care for the person with dementia.”

Thank you, Juanita, for sharing your insight and giving us a chance to reflect on our own relationships with our caregivers!