Walking in my shoes–living with a spouse with frontotemporal dementia
February 24, 2010 by Holly
Every time my sister or children come to visit, I learn a little bit more about how I am managing my new life—a life with my husband, Dave who has Frontotemporal dementia. I am more aware of how I speak to him–including my tone and patience. I am also more aware of how I ‘respond’ or ‘react’ to comments from people who step into our lives for a few hours or a few days; people who have good intentions, but aren’t walking in my shoes. A good example was the other night…
Dave was tired and wanted to go to bed soon after dinner, but he hadn’t done the dishes. There is a courtesy rule in our household that the cook doesn’t wash dishes. He said he would do them in the morning and I quickly said “oh no, you need to do them now.”
My sister was sitting on the couch and her eyes popped wider and said “that’s okay, Dave, I’ll do them for you.” I paused, took a breath, and then quietly told her that it helps both of us if he does them tonight.
I can understand that if you are visiting us for a short time, it may seem cruel to insist on the dishes when Dave wants to go to bed. After all, Dave is the one with the illness, the one who needs assistance and protection. What they don’t see is the growing list of responsibilities and chores that are piling up on my shoulders. They don’t realize that something as small as doing the dishes is one less chore for me. Fortunately Dave has enough insight to see how much work I do around the house (in addition to running 2 businesses) and he wants to contribute to the best of his ability. As his condition changes, so does his ‘honey-do’ list. It is a win-win for both of us.
This little story teaches me not to be upset when someone makes a comment. I am not walking in their shoes either and they are doing the best they can. Living with dementia is a novel experience and like parenting, it is trial and error—not just for Dave and me, but for our family and friends. I must remind myself to stay ‘grounded’ in my belief that I am caring for Dave (and me) in the best way I can. And so far, it seems to be getting easier.
symptoms of dementia on Wed, 10th Mar 2010 12:51 am
What’s the difference between dementia and Alzheimers? what is the difference? I think my father may be suffering one of these? does anyone know the warning signs? thanks
Holly on Fri, 12th Mar 2010 8:58 am
Hi Suriya,
I am not sure if you received my earlier message but I want to repeat it in case you didn’t. Alzheimer’s is a type of dementia (most common form) and my husband has Frontotemporal dementia (usually affects people under age 65 and is the 2nd most common form). Alzheimer’s usually begins affecting the back of the brain so people will start losing their memory, especially short-term (what they did yesterday, ate for dinner or may repeatedly ask the same question); they begin to lose their sense of direction; have problems with banking and numbers. In FTD, the deterioration begins in the front & sides of the brain: language–have trouble finding words, speak less; changes in personality–appear sad, apathetic, aggressive etc.; lose their logic and reasoning. In all forms of dementia, the brain ages faster than normal. Since the brain is complex there are many ways it affects people. If you have a little voice telling you that your Dad is changing, you are correct. If you have specific signs you are concerned about, why don’t you send me a note to hollyeburne@gmail.com and we can chat about it further.
Best wishes,
Holly