I am entering a new territory here. Approximately two months ago, my husband, Richard, and I went “public” with his recent diagnosis of Frontotemporal Degeneration (FTD). I have been encouraged by people to write about this challenging, horrible and amazing journey in this blog. I’ve been avoiding doing this for a number of reasons.
Probably the foremost reason for avoiding writing about FTD is that we live with it every minute of every day and writing about it means I’m doing that in a moment where I could be doing something mindless like playing a stupid game on Facebook. Sometimes doing something mindless is a blessed relief.
Another real reason for not writing about FTD is that I am a psychologist in private practice with many clients. I love the work I do and that is actually the least stressful place in my life right now. I have worried that my clients will read the blog and then be concerned about me. I don’t want my clients to worry about me… they are in therapy to do their own work. I have told several clients about the FTD diagnosis because I felt they might hear it elsewhere. Most have been very kind and supportive in their reactions. Some of my clients work in the legal community and would have heard the news when we announced it to the attorneys that Rich has worked with for 25 years.
I told these clients the rule I have always had in my practice: “If I wouldn’t pay to see me, I won’t let you pay to see me.” I believe that therapy is an extremely valuable experience, when you see a talented therapist, but I also know my clients spend their hard earned money for me to help them. For the past 28 years of doing this work, if I didn’t feel well or there was something that would keep me from giving my full attention to the client(s) in front of me, then I would cancel the session rather than waste their money. This rule still holds. I am grateful that I have an extraordinary ability to focus my attention on the task at hand which allows me to put other issues aside.
I have made the decision to step into blogging about FTD and our lives with this diagnosis. It is a risk, but damn… life is a risk and comes with no guarantees.
All that said, if you are reading this and you would rather not see me… I mean really SEE me… then this blog is not for you. I intend to be bluntly honest about the stresses and strains of living with FTD. I will be writing MY experience with living with a spouse (we’ve been together 36 years). At times I may be able to get Rich to write some of his experiences of having FTD and I will post them here. I will also invite our two adult daughters, Tara and Ashley, to write about their experiences of watching their parents live with FTD and how it affects them, as well.
The foremost reason FOR writing this blog about FTD is that it may help someone out there. Rich and I have been trying to figure out what has been happening to him since 2008 and have learned some important things. Also, as the FTD video states, we are members of a really SHITTY club, those living with FTD, and I think other “club members” might be helped in feeling less isolated.
Here begins blogging about Frontotemporal Degeneration, also known as Frontotemporal Dementia (which is not as accurate as Degeneration). Let the blogging begin…