I have written many times about how family and friends seem to run away as soon as they hear about our diagnosis of FTD, or any other dementia for that matter. It is so sad, on both sides. Those of us with FTD do still have things to offer to the world. Yes, our frontal and temporal lobes are damaged, but other parts of our brains still work. Our memories are often not stolen until the end of the disease, at least the long term memories. You want to know about a family gathering at my grandmother's house when I was 15 or even 5? Just ask me, I can remember. I can remember where each of us was sitting, what Grandma was wearing and what dinner she prepared.
There is debate as to how accurate these memories are because those without FTD tend to think of our entire brain as being worthless. I will admit that some days it feels that way. However, I can remember every nook and cranny in Grandma's house and in my childhood home. I have a quilt that my great-grandmother made for me. I now have it out of storage and I can look at each fabric and tell you what article of clothing she made out of each one and for whom it was made. Honestly, there are a few I don't recognize but those were probably made for someone I didn't know or had never seen them in it.
Instead of family members being interested in my stories, they are full of doubt that they are genuine memories. "It is just one of her freaky ideas!" or "What an imagination!" I could go on about everyone who has dropped out of my life. I can't really fault them because it can be difficult to spend a lot of time with someone who has dementia.
Another aspect of our loneliness is that we lose our independence after diagnosis. We can no longer drive so any activity has to be planned out ahead of time. Many, including me, no longer have the ability to plan anything even slightly complicated.
Okay, okay, you've got it. You understand we can be very lonely. Where is the conundrum?
The conundrum is that even though we are so lonely, we are often not able to enjoy ourselves outside our usual environment. This includes being in unfamiliar places, in noisy places, places with too many people or people too close to us, too many lights, too many conflicting sounds like voices, music and other conversations. Visiting in other peoples homes is no longer enjoyable to me. Especially true if there are pets are very young children, phones ringing, television and video games blaring.
If I could and it wouldn't come across as demanding and rude, I would give a list of instructions to anyone inviting me to their home. No pets around me, no babies handed to me, don't ask me to play with children or watch them play, turn of the television and especially video games with all the noises and flashing screens, offer me a seat out of the traffic pattern where no one can come up behind me and on and on. I guess that would limit my outside visits to zero. However, selecting a small, quiet and uncrowded restaurant should be pretty easy.
Then again, it may be one of those days when I just cannot deal with people at all. Those are very frequent. Maybe 25 out of 30? The actual number is probably higher, more like 29 out of 30. So I will sit in my house with the doors and windows closed so that it does not appear to be welcoming visitors. I often will ignore phone calls because I cannot deal with talking. I will cancel appointments, even doctor visits because I just cannot face people at all on some days.
Now, you should really understand why I say it is a conundrum. We can sit and feel extremely lonely yet not want to be around anyone at all. It is another conundrum that friends and family know that there is something "wrong" with us, yet when we do something inappropriate, they seem to forget that we had no control over what we did. How many times do we have to explain about loss of filters, inability to understand sarcasm or subtleties of conversation? How many times do we have to beg forgiveness or utter those words I hate so much: "It's not me, it's the disease."
There is nothing difficult to understand why I (and probably everyone with FTD) want to accepted for who we still are and what we still have to contribute to the world rather than ignored because of our disease.
We read so often about how lonely caregivers can be, how isolated, how tired, how difficult it is for them to get away for even an afternoon. I do not dispute that at all, not one tiny bit. I do, thought, resent it when it is all about the caregiver, with no thought to how lonely those with FTD are as well.