More Random Thoughts

Some random thoughts:

I have become the queen of online shopping. I was never a big fan of shopping anyway, then you add in the FTD, forget it! Shopping is so stressful, from the crowds to my difficulty of handling financial transactions. If I must shop, I limit myself to the same handful of stores so that I am in somewhat familiar surroundings. I have not been inside a mall in several years. I only shop on weekdays during school and work hours when the stores are a bit less crowded. Even with these guidelines, sometimes I find myself in a store, panicking and begging the person I am with to get me out of there.

There are quite a few symptoms of FTD that are rarely talked about, because they are downright embarrassing.  One is the loss of sexual inhibitions and sometimes even hyper-sexuality. Last week, during an outing, someone was talking and joking. My immediate response was of a sexual nature. The people listening started laughing while looking embarrassed. Several comments were made about what I said. I think it was just not something they expected from someone my age. I still don't think my comment was totally inappropriate (at least not this time) but I obviously made them uncomfortable which made me want to curl up and disappear.  The sad part is that I thought I had filtered it! This problem is due to the lack of impulse control and filters that those of us with FTD struggle with. Quite often, if we think it, we say it.

The hyper-sexuality issue can be extremely uncomfortable to all involved. I have spoken with quite a few with FTD who have had very frustrating problems with this. Imagine, the loved one with FTD is feeling more sexual than they ever have before, but the caregiver, after caring for all their loved one's needs all day, every day, has very little or no interest at all in a sexual relationship. I don't think I need to go in to any specifics, as I believe it is easy to imagine the difficulties this could create. Plus, I don't want to go beyond a PG rating!

Another big problem with FTD is bathroom accidents. I get so angry when I read posts on an online support group from caregivers insisting their loved one does it intentionally. What? Sure, we sit around and think "How can I make my caregiver's day worse?" Yes, no one likes to clean up accidents or to have to get up close and personal with those body parts to clean them. Guess what, caregivers? Can you please think how embarrassing it is for us?  Fortunately, I have not reached that point yet, but I realize that it will someday. I also imagine how humiliated I will be.

I have talked about this repeatedly but cannot repeat it often enough: FTD is not an obvious disease. We can still be intelligent and well-functioning. We are also very clever about covering up our problems. Don't try to make us "feel better" by telling us that we seem perfectly fine. We know that, we try very hard to not let this disease get the better of us or to let it show. This past week, I had another incident of someone telling me, "Oh, don't worry about it, even I constantly forget where my keys are!" Uh, huh!  Gee, thanks, it really is the same thing! Our problem is usually not memory loss, at least until the late stages of the disease. We are not hypochondriacs or imagining our disease. We have confirmed diagnosis from the appropriate brain scans. We have it and it is a real disease, even if you haven't heard of it! Obviously, I am blessed by still having the ability to read and write. I wish the doubters could come to my house and watch me try to follow a recipe, or watch me try to pay for a cup of coffee with cash, or watch me trying to find my way around even in familiar places. Yes, I don't seem to need that cane I walk with. It is not because I can't walk, it is because at any time, I can lose my balance and fall. At least with the cane, I stand a better chance of not falling and injuring myself.

I am so very thankful that there are so many people who have FTD who are willing to talk about it. I would not make it through very many days without help from my online support group. Not mine literally, but the one I visit every day. We laugh together, cry together, share helpful advice and pass on any new or hopeful research we stumble across. I am so thankful for those individuals who administer the site. This disease is one, I believe, that only others dealing with it can truly understand what we are going through. To those of you from the support group who read this, you know it is you I am talking about and I cannot thank you enough!!!

Enough rambling for one day. I hope I haven't repeated myself from past posts, at least not too much. Hopefully, my brain will be more organized next time!