The first thing you learn when you find out you have FTD, or that a loved one does, is that it is not Alzheimer's Disease. I have written about the frustration that many have while trying to get a correct diagnosis. One of the biggest differences is that, in many cases, the memory remains intact. It's in all the research and informational packets out there, including ones in the links that I have included in previous blogs.
The preserved memory is one of the big reasons it is difficult to get a correct diagnosis. Most dementia screening is geared to memory tests. I continue to have increasing difficulties with getting confused over simple things. This is not a memory issue, it is that loss of executive functioning, not being able to figure things out or think about two things at once.
When I was first diagnosed and started researching this disease called fronto temporal lobe degeneration/dementia, I was greatly encouraged that it was likely that my memory would remain intact because, without getting into the details of the different types, the type I have, Behavioral Variant FTD (bvFTD, formerly called Pick's Disease) quite often spares the memory. I figured most of the other symptoms, such as getting lost, loss of empathy for others, loss of impulse control, poor judgement and decision making, I figured these things could be compensated for until it got really, really bad. That has actually worked to some extent as my husband watches over me and has taken on a lot of responsibilities that used to be mine.
The bad part is that I do remember! I remember the person I used to be. I remember all the things I used to be able to do. I miss painting and creating things. I miss being able to watch a movie all the way through. I miss being a good friend. I miss having fun! I miss being a wife and feeling comfort in my husband's arms rather than being so dependent on his care. I miss being able to travel. I miss being able to pick up the phone and call someone. I miss being able to go somewhere or do something by myself. I actually miss working (well, sometimes, definitely not during tax season). The list goes on and on...
Now, I often find myself wishing that the disease would take my memory. That is quite selfish of me because I do realize that it would be much more difficult for my family. I am just having a really bad week, what my mother would have called "a feel sorry for Cindy week." We used to only allow one day of feeling sorry for ourselves when something rotten would happen, then we would get on with making things better. This week though, just when I would start feeling like I could get above the rotten things, another one would pile on. A huge problem of being so dependent on others is that I leave myself wide open to being disappointed.
Are you reading and thinking "Wow, get over yourself already!" or that I should stop thinking about the negatives. That's okay, because that's what I am thinking the entire time I have been writing this. As I have said many times, I am so very thankful that I still have the ability to read and be aware of what I am reading, along with the ability to write somewhat coherently... so VERY thankful. I am also extremely thankful that I have family to care for me. As I learn of others whose loved ones have abandoned them because of this disease, or the others who are way too young to have to suffer from this disease, some even still trying to raise their children, I do realize how fortunate I am. I do. It is just tough some days to balance it all out.
I apologize for being so down in this week's blog. I was going to skip writing one this week, but thought that perhaps it might help caregivers to realize some of what is trapped inside the mind of the loved one they are caring for, or at least what is trapped in my mind. Now, where did I put those bootstraps? I need to start pulling them up!
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