Loneliness

I have decided that FTD is a lonely disease. So few people understand it. Certainly, as I have said enough times already, that even the doctors don't understand it. Those who do are few and far between. That rules out talking to most doctors. Plus with today's state of medicine, the docs don't have time to sit and talk anymore.

Family and friends say they understand. They should as I have explained the disease often enough and handed them enough literature to paper a small room, maybe even a large room. I know they get tired of hearing me talk about it and the frustrations involved with it. They listen and agree and sympathize. Even though it may sound demanding and selfish, I want their empathy, not sympathy.

Family and friends understand the facts of the disease and the concept of the symptoms. They certainly understand how my having the disease affects them. This includes the things that they now have to do because I no longer can. For instance, we needed to purchase a new washer a few years ago and I still cannot figure out how to operate it properly. My husband now does the laundry. I kept the home running smoothly. When there were problems or issues that cropped up, I got on the phone and resolved them. I even did simple home repairs. I did the grocery shopping by rote, didn't need to think about it. I just grabbed the list and went. Now, the grocery store is my least favorite place to go with too much noise, confusion and too many choices. So they understand that either they need to do the grocery shopping or give me a day to go through the ad and make the list, then a different day to do the shopping. Of course, someone must go with me as well.

So they understand the disease and how it is affecting them, but they cannot really understand how it affects me. They think that when I start to fall apart, if they say something or hold my hand, I should immediately get "over it" and calm down. I only wish it was that easy. It is this gap in their understanding that makes me feel lonely, that no one understands me so why bother trying to talk about it.

There is an online support group for those of us with a diagnosis of FTD. It helps, we exchange information and beg for suggestions and understanding when we are having problems. Even there, though, there is only so much it can help. I can't post all my everyday frustrations. They would get tired of reading about my problems which seem trivial to so many other things being posted, even to me. While this support group is a tremendous help, it doesn't really help the everyday loneliness.

I see a wonderful and supportive psychologist who helps me immensely. She specializes in dementia cases, so she understands me pretty well. Talking to her helps with the big things I am trying to work through, but there is only so much talking we can do since I only get to see her for one hour per month.

I was prompted to write about this loneliness because for the past three days, I have constantly felt close to tears. It feels like if I could just have a good cry, I could get it out and feel better. Unfortunately FTD and I don't do well expressing emotions, including being able to cry. There are a couple stressful situations happening in my life right now that are most likely contributing to this feeling of needing to cry. They are not even close to being tragedies or threatening to my well being. When they combine with the everyday frustrations of dealing with FTD, however, I don't stand much of a chance of feeling normal.

I don't have any answers or suggestions for you today, except maybe to the caregivers, friends and family. Try to stop and think about how the things that your loved one is doing that have you frustrated and try to think how they must be feeling before you react. Perhaps take some time to sit with them later, during a quiet time, and ask them about any frustrations they are having and if there is anything you can do to help.