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For Better Or Worse: Caring For A Spouse With Dementia

elderly couple photo
In my early years of being in home care, I received a phone call from an elderly man looking for help with his wife, who had moderate to severe dementia.  He explained to me that he owns a cattle farm, which requires a lot of his attention, but his wife’s condition was demanding so much of his time, that he wasn’t able to get anything done.  He needed a caregiver to stay with her for a few hours each day, so he could take care of his responsibilities on the farm.  “No problem, we can handle that,” I told him.”
I heard a long, cleansing sigh on the other end of the phone, but his worry and anxiety returned in a split second.  “Well, I’m afraid her case might be a little more complicated than you’re used to,” he stammered.  I could hear the smorgasbord of emotions in his voice. Fear, sadness, frustration, guilt – it was all there.  “She doesn’t like to let me out of her sight.  She literally follows me everywhere I go.  At this point, the only people she’s comfortable being with is myself and our kids.”
I knew that gaining his wife’s trust would be challenging, but not impossible.  With the right caregiver, we could help this couple.  “And there’s one more thing…she refuses to take a bath or shower.  I don’t know what happened, but suddenly she’s terrified of it.  I need someone who can convince her to bathe, because quite frankly, she smells.”  Again, challenging, but not impossible.The next day, I drove to the couple’s home, which was a beautiful, old stone house situated on top of rolling green hills.  From the back, you could see acres and acres of land, dotted with black and white cattle.  It was so calming and peaceful.
When I met the couple, it was obvious from the start just how severe his wife’s dementia was. She was very suspicious and uneasy about me being there, and her short-term memory lasted about 30 seconds or so.  Eventually, she did warm up to me, and I discovered that she was a sweet woman with a great sense of humor.We sat down in the dining room to discuss her care, and how many hours a day he felt he would need a caregiver in the home, so he could tend to his work.  But it was difficult to carry on a conversation with him, because his wife, not remembering who I was or why I was there, would frequently interrupt, asking me my name, and wanting to know again what I was doing there. During my visit there, the couple’s eldest daughter stopped in.  She pulled me aside, and revealed that it took a lot of convincing to get her father to agree to outside help.  She added that the stress and frustration of caring for her mother was really taking a toll on him – he was absolutely burned out, yet he was hesitant to hire outside help for his wife of over 40 years, because he felt like he should be able to handle it all.  The bottom line was, she was the love of his life, and he felt guilty for taking a step back to take care of himself and his needs.It’s not uncommon for a husband or wife to feel they should be able to single handedly take care of their ill spouse, but it’s not in the best interest of the caregiving husband or wife, or the ill loved one.  Dementia changes and challenges a marriage in so many ways.  What was once a loving partnership may now resemble a parent-child relationship, where one spouse becomes responsible for the other. One of the most difficult aspects of caring for a spouse with dementia are the personality changes.  Patients with dementia can become totally dependent on their caregiving spouse, needing direction every step of the way.  Others can become combative, angry, and aggressive toward their spouse, resentful for telling him or her what to do all the time.
Dementia also changes intimacy in a marriage.  When your sexual partner has dementia, the entire dynamic of the relationship changes. The caregiving spouse is unsure of what is appropriate in terms of a sexual relationship.  The caregiving husband or wife ends up suffering the negative impacts of caring for their spouse with dementia.  They suffer with stress, depression, grieving/loss, and wealth of their own health issues,  Most caregiving spouses are seniors themselves, and have their own physical issues to be concerned with.  Another stressor is the financial impact.  Many caregiving spouses have to reduce their work hours, or retire altogether in order to care for their affected spouse.  

It took some time, but fortunately, my client’s husband realized that he just couldn’t handle this alone.  He realized the toll his caregiving responsibilities were taking on his physical and mental health, his time, and his finances.  With some prodding and encouraging from his daughter, he agreed to let our home care agency find a caring, compassionate caregiver to come to his home and help him care for his wife, even if it was just for part of the day.  It was slow-going at first, but after a few weeks, his wife warmed up to the caregiver I placed in her home.  With some coaxing, she even agreed to bathing twice a week.  My client’s husband was very thankful and relieved, and no longer felt guilty for hiring outside help.  

Here are some great resources for caregiving spouses:

http://www.wellspouse.org/

Changes in Relationships

Alzheimer’s and Dementia Caregiver Center

 

Photo by Abdulsalam Haykal