Missing Family and Friends

As well as I know I have FTD, I also know that the day will come that I won't have any friends or family remaining who will still want to deal with me.

The first reason is one I have written about so many times. For whatever reason, when someone hears a person has FTD they start avoiding them. I have no idea whether it is that knowing someone they love has dementia makes them afraid to face their own mortality. Perhaps it is because they don't want to be saddled with any responsibility of taking care of someone with dementia. Maybe they think it is true that everyone with dementia is the same and does not realize what is going on, so why bother to visit since they won't remember anyway. I don't think any of us will even solve that conundrum and we will never understand why.

Then comes the difficult reason to admit. I fear that one day I will offend enough people to the point that no one will even love me anymore.  Yesterday was an excellent example.

I had offered to pay a couple family member to come to my house and help me go through more of my late husband's "things" and there are a lot of them. They agreed to be here at noon. When they finally arrived at 2:30, my FTD had me quite wound up. Me, I started working on things at the noon hour when I expected them. Now, I must add, they did send a message that they would be late but, of course, my  phone was upstairs so I didn't read it until after they had arrived. 

Fortunately I love these kids (actually 20 somethings) so much that I kept forcing myself to calm down and kept reminding myself that some people actually have lives that don't include helping me clean out the basement and garage. When they did arrive, without much of a howdy do, I assigned them tasks. I was very glad that I had calmed myself down because they worked quite hard and I have to say that my garage has never looked so clean! Not even when we moved in!

You all probably know already how much any activity can exhaust someone with FTD. If I cook dinner, I am often too exhausted afterward to even eat. I hate it! So you know that working pretty much non-stop going through everything in a file cabinet and an entire closet where my husband stored everything he didn't know where else to put it. It is made even worse because of the emotions involved with going through his things. Around 5:00 or so, a dear friend came by. He is an old family friend so I knew his coming by would not bother the kids and we had not seen each other since weeks before Christmas. This is when the trouble started.

He walked in and a cloud of cologne hit me. He always wears cologne, but this was a different one and it immediately attacked my allergies. Part of the problem was could have been that after breathing dust and probably mold for five hours, my allergies were already kicked into high gear. However, I was exhausted from working so hard for a few hours so reason was not going to be part of my response. 

Without even thinking, I asked him, "What did you do, take a bath in cologne?" He snapped back at me, "Not exactly and there's nothing you can do about it now."  Ohh, them's fightin' words pardner. I said something to the effect that I could send him upstairs to wash it off or he could go home, take a shower and put on different clothes. 
His quick response was "Go ahead and try."

I looked at him for a bit and remembered how long he has been a friend so I choked back the next words my exhaustion and FTD were wanting me to say. There were more unpleasant moments, like when he looked at a couple plastic totes that I had very carefully packed using bubble wrap and lots of packing paper. He said "What the hell is that? It looks like boxes of garbage. I explained it was just the packing paper he was seeing and then he said "It still looks like garbage to me." I took a deep breath and explained that they were two totes packed with expensive dishes that our aunt had passed on to my daughter and that they are in no way garbage. He had to do it though. He said one more time that they still look like garbage. 

At that point, I so much wanted to ask him to leave and never come back but I took a couple more deep breaths and let it go. I knew I did not dare open my mouth or this 50-year friendship would be over. Instead, I said that I thought it was past time for us to knock off for the day and invited the kids along to our planned dinner out so I would have a buffer.

It helped a lot. The kids are quite entertaining and I talked mostly with them, including him at times. When he drove me home and came in to visit a bit, I was very careful and kept things light. As exhausted as I was and irritated to boot, I did not trust myself at all. 

I can see that, as my FTD progresses, the more I am going to offend people, perhaps not even realizing it when I do. Even though I have explained to people, including him, many times about the symptoms of FTD and how they affect my words and actions, they just do not get it. They think they do and say they do, even to the point of reminding me that I have already told them thank so they understand. 

You all, I am sure, whether one with FTD or as a caregiver and/or family member, have had to deal with similar experiences. I wish I had an answer but I don't. I have explained it so often and in so many different ways that I truly do not think they will ever get it. Perhaps, unless you have dealt with FTD in the first person, it is not possible to understand. 

I often become resentful that I need to measure every word and every action beforehand. That is nearly impossible for someone with FTD to do. We have no impulse control, little or no empathy and enough apathy that we often don't care if we insult people.  Attempting to control everything you do or say is exhausting if possible at all.  I want to scream to the heavens, "I'm sorry, but I just cannot help what my brain does or what it makes my mouth say!"

Some family members and a couple friends seem downright insulted that I prefer talking to my FTD friends, whether online or on the phone, over talking to them. It is comfortable to be talking to someone who cares and who understands. It is relaxing and assuring to be understood and loved despite this disease. It is so much easier to get the correct words out and understood when you don't have to measure every word before it comes out. At least I used to do that. I can't anymore. So, I foresee the day when my FTD friends are the only friends and family left.

So, to all my FTD friends out there, a huge thank you for being there for me anytime I need emotional support. Thank you also to those who put up with me when I am being obnoxious or saying things in a way I think make sense but are in reality not saying what I am thinking.

 Above all, thank you God, for giving me a daughter who understands it all, still sees me as just her mom, laughs most of it off and still loves me when she can't.