It has been over a year since my husband died as a result of Frontotemporal Degeneration. The last two years of his life were stressful for all of us and that’s putting it mildly.
I have been a little perturbed lately by the many FTD blogs I follow and a Yahoo FTD Support group I am involved in. In the midst of my own desolation over the last two years, it seems that many other people have now started on that same journey. They tell their tales here and on the pages of books now available on Amazon and iTunes. In libraries and bookstores. Some of the stories are almost unbelievable. But I believe them because I too have experienced many of the episodes they describe.
“Odd” behavior doesn’t even begin to describe it.
Challenges in social situations. Even with the most mundane of household tasks and necessities.
It’s not that I have forgotten what I did, just that I cannot believe that I actually did it. Handled things I mean.
I’ve always been pretty strong and been able to cope with just about anything. But, going through the day-to-day challenges of FTD – well frankly, I’m still a little gobsmascked. The saddest thing of all was that the one person who would have helped me cope with such ordeals on a daily basis was the one person who could not help me. We went through so much together before FTD- but no more than anyone else really. You know, the usual ups and downs of everyday married life with kids.
But we were always there for one another – someone always had your back. The toughest part for me since he died is not actually being anyone’s “Number One” anymore. My kids have their spouses and kids, my in-laws have each other. Seems like everyone has someone who puts them first. so that is the hardest thing for me right now.
Being a nurse, mother and wife, I am used to prioritizing and putting the needs of others before mine. It’s quite a new sensation when you don’t have to do that anymore. Strange.
Anyway, watching all these other people go through such similar experiences moves me in different ways. Angry obviously, that the bastard disease takes such a toll in such a cruel, insidious way. Touched by the humility and acceptance of many of the caregivers. Frustrated that I cannot help very much. I can offer to relate my experience but would never dream of giving ‘advice’. Every person is unique. Every person with FTD is unique. The bastard disease attacks the very soul of its victims, it seems.
The destroyer of dignity, spirit and freedom reigns supreme.
Hang in there folks. You can’t stop it taking your loved one but you can stop it taking you.
I have no magic pill for either you or your loved one. You will come out the other side of the tornado changed. Broken but still strong. Sadder but wiser.
“When you get to the end of your rope, tie a knot in it and hang on”.
- Is there anybody there? OH YES!! (deborahthelwell.wordpress.com)
- Healthy Monday: Care for the Caregiver (beactivedecatur.wordpress.com)
- Boston Elder Care Expert A. Michael Bloom’s Book, “The Accidental Caregiver’s Survival Guide,” Offers Practical, Life-Saving Strategies (sacbee.com)
- Compassion Fatigue: 5 Sure-fire Ways of Recognizing and Preventing Caregiver Burnout (musicwithharry.wordpress.com)
- Coping with an Impending Death | About.com Death & Dying (myeulogy.tumblr.com)