Holly Eburne » walking in my shoes

Finding Humour in Dementia

Holly — Sun, 22 Aug 2010 20:50:23 +0000

Living with dementia (my husband, Dave, has frontotemporal dementia) can be challenging, but at the same time a great teacher. The other day Dave and I are sitting under a giant ponderosa pine tree, enjoying the sights and sounds of the birds around our pond. Since Dave’s dementia affects his language skills, he doesn’t talk very much and when he does, he likes to start a conversation with a question; then more questions. This time he is asking me about our springer spaniels…

He wants to know what time I left for a walk with them this morning; did I see any horses or other animals; was the path muddy; were the puddles dried up; what route did I take?

I am getting tired of answering questions and I am thinking…are you kidding me about what path I took? We live across the road from miles of trails in deep woods. I can assure you there aren’t signposts for Bear Ave.or Cougar Rd.

“I don’t know Dave, there are lots of trails”.

He said “I thought you were going on the lower one”.

Oh good, he has a simple name for one of them…

“Yes, that is the one”.

But to test my patience further (definitely not on purpose), Dave wants to know where I turned around. Well…that just about throws me over the edge. I turn my head away from him and in a split second I say… “I turned around at the 20th tree past the boulder“. I can’t believe those words came out of my mouth and I am afraid to look at Dave because I will break out laughing.

There is silence and when I turn towards him, he has a serious look on his face…”I don’t think I know where that is”. Oh my! Dave doesn’t realize that I’m kidding and he is trying his best to figure it out. Instead of laughing (which is just below the surface), I smile and tell him that I will show him when we go on our next hike. My frustrations completely evaporate.

When I go over this scene in my head, I know that I didn’t start off in good humour with Dave’s questioning, but somehow I found a way to lighten it up. There seems to be sadness, anger and darkness surrounding dementia but I am discovering that with a bit of patience and practice, it is getting easier to laugh and find joy in the most unexpected moments.

I would love to hear about your unexpected moments of joy or humour.

My husband speaks about his life with his dementia

Holly — Sun, 18 Apr 2010 14:56:08 +0000

Three years ago the doctors put a label on my husband’s (Dave) changing personality, behavior and emotions. It explains why he doesn’t recognize his fellow teachers of 25 years; why he has trouble reading and speaking; why he is quieter and is withdrawing into his own world. It explains the seizures, hand tremors, loss of sense of humor (almost), and changing senses–hearing, taste, smell, touch.

Dave at age 57 was officially diagnosed with Frontotemporal dementia. His attitude is amazing. When I ask him if he gets frustrated that his hand shakes making it difficult for him to carve–his passion for 35 years–or that he doesn’t recognize people, or that he has daily headaches, he says “Yes”. Are you angry? “No” “I know it is my problem and I can’t blame anyone for this. I have to figure it out”. Wow. FTD affects insight and I love it when I hear flashes of it from Dave.

I watch and learn from Dave every day. I am curious what it must be like to live with dementia and his continual challenges so I did a video of Dave last week while we were snowshoeing. If you want to hear some of his thoughts please click on this video: ”http://www.youtube.com/v/m0VOv_ZV-Xc&hl=en_US&fs=1&”>

Walking in my shoes–living with a spouse with frontotemporal dementia

Holly — Wed, 24 Feb 2010 18:01:09 +0000

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.