By Kathy Hubbard
In the past I’ve written about dementia in terms of the diseases and the warning signs. Today we’re going to look at how relationships are affected from the viewpoint of the person with the disease, not the care partner and not the medical professional.
What happened is that while researching for an article suitable for Alzheimer’s Awareness Month, I came across a series of webinars called Dementia Chats hosted by a woman named Lori La Bey. This woman founded an advocacy organization named Alzheimer’s Speaks after caring for her Alzheimer’s afflicted mother for over thirty years.
The podcast that caught my attention was titled “How Spouses and Care Partners Are Impacted by Dementia.” Believe me it was enlightening, particularly because the people participating in the group-speak were all dementia sufferers and all involved in advocacy programs in their communities.
La Bey facilitated the discussion with six participants. Two have early-onset Alzheimer’s, two have vascular dementia, one was diagnosed with mild cognitive impairment and one has Lewy Body dementia with Parkinson’s. There are three women and three men, all appear to be in their 50s or 60s.
Two of the women said that they had been the primary source of their family income. Their husbands had to retire to care for them – one couple had to move in with a daughter – which has caused financial concerns.
“We had to give up our hopes and dreams,” one said. Both talked about their spouses taking on responsibilities they hadn’t needed to do before such as being in charge of the checkbook. They all spoke about how life has changed.
The third woman said that the biggest change for her and her husband was focus. Where before her diagnosis they could focus on their relationship, they now focus on her health.
“We were once partners in life. We’re now partners in the care of me,” she said.
One man’s comment regarding his wife was, “Her fear was what she was going to have to give up to take care of me.” The toxic environment culminated with the man moving to an assisted living facility after he found he couldn’t control his temper and at one point almost hit her.
The man with Lewy Body dementia said that he feels guilty that all the burdens fall on his wife. He said that his wife goes into bouts of depression. Numbers don’t make any sense to him anymore. If you give him a can of furniture wax and a cloth he often doesn’t know what to do with it.
Discussing completing tasks they all said that there are days they can do things and days they can’t. One day easy tasks elude them other days it’s the more complicated tasks. Things that they were very good at in the past now require help from their spouses but their spouses don’t know when to help. They all described this as frustrating for both sides.
As they were talking about their spouses getting outside help from friends and family, one of the women said, “I found people were willing to help in the short term, but Alzheimer’s isn’t a short term condition. It’s a long term condition and caregivers get tired of it.”
One man added, “It’s a long term grieving process and not a positive process and that’s what’s so devastating for both our spouses and ourselves. When someone dies you go through the grieving process and move on. This is not that way. It’s a long, slow process and the difficult part is we know what the end is going to be.”
If you want to see this YouTube video, go to AlzheimersSpeaks.com and click on the link. It’s close to an hour, but well worth the time.
I don’t want to leave you with the impression that it’s sad or depressing. Toward the end, several of them comment on how their relationships have become more intimate. Not in a sexual way, but in that they are communicating better, spending more time together and becoming more appreciative of one another.
Talking about how she and her husband always hold hands when walking, a woman said, “It’s security for both of us. ‘You’re here. You’re still here. I’m not going to let you go. I’ve got a hold of you.’”
Kathy Hubbard is a member of Bonner General Health Foundation Advisory Council. She can be reached at firstname.lastname@example.org.