Dementia and the Well Spouse
I can remember it as if it was yesterday. Sitting in my very first support group at Mount Sinai in Miami Beach. My mother had just been diagnosed with dementia and I was told attending a support group would help.
There were six of us in a large, spread out dining room that felt more like a lecture hall than an intimate table for ten. A quick scan around the room was a reality check. I was 38 years old and caring for my mother. All of the others were much older and caring for a spouse. I felt like a fish out of water.
People nodded and smiled at me. I struck up several conversations only to be struck down. I was too naive and I didn't know what others knew. Caring for a parent is totally different than caring for a spouse.
So, I innocently sat through this group listening to the doctor talking about the different stages of dementia and how I could expect Mom to act. I honestly tried to befriend the others in the group who gave me a "knowing" smile and a look that I now know said, "It's different, it's not your wife."
I didn't get it back then because I thought that we were all in it together. I thought going through the different stages of dementia should have been our bond. But caring for a spouse is so much different than caring for a parent.
Some things stick with us and make us better caregivers. For me, this lesson hit home, then and now. Back then, I had no idea years later I would be a licensed therapist and running the group, not only for the Alzheimer's Association, but also for the Alzheimer's Educational program at the Wien Center.
Because of my own experience, I was very sensitive to the needs of each group – children and spouses. Even though both groups will experience many of the same stages of dementia, the difference is that each stage of dementia means something different to each group.
With this in mind, I tried to find a balance for my groups. Spouse, child, or friend – I had to remember that the stages of dementia were different for each group I ran. Talk about stress!
The reality is that group balance and cohesion depends on many factors. That being said, I have five ways to help understand the major difference in caring for a spouse.
- The expectations are different. Adults fall in love and get married. And as spouses, they have a dream to share their lives and expect to grow old together. Despite the imperfections, many tolerate the ups and downs that marriage brings. Even in their wildest dreams, despite vows of "in sickness and in health," few people ever expect or plan for dementia.
- The intimacy is different. Spouses have sex and sexual needs. Despite what children may want to believe, it's totally natural to have, want and be able to be sexual beings throughout our lives. But when your sexual partner has dementia, the entire dynamic of the relationship changes.
- The interaction is different. Couples have their own form of communication. But dementia changes the way we interact and communicate with other people. As a result, caregiver spouses become responsible for taking control and being in charge of a person who was once capable on their own. They find themselves directing (or even ordering and pleading) for their spouse to do the most ordinary, everyday things, including bathing and grooming.
- The role is different. When you are married to a person, there is a written and unwritten "code of roles." For example, (depending on the generation) some couples may maintain the idea that "men work on the outside, women work on the inside." Today, both sexes can be equal partners, but every relationship still has roles. Who pays the bills, who cares for the car and lawn, who grocery shops. Dementia changes these roles and it’s up to the caregiver to be able to be able to adapt to these role changes.
- The socialization is different. The reality is the wife is usually the one to direct the social functions of the family. Just like Judy McCoy in The Love Boat. When the wife has dementia, socialization for the spouse slows down or ceases altogether. No matter which spouse has dementia, friends start to fade away and, due to the different stages of dementia, socializing with others becomes very difficult.
If you are caring for a spouse with dementia, you will want to check out The Well Spouse Association, which is dedicated to helping out the spousal caregiver. WSA is filled with great resources, articles and advice that offers spouse specific caregiver support, all helping you through your journey. Go to http://www.wellspouse.org/.
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