I was so very relieved when I learned a while back that another symptom of Fronto-Temporal Lobe Dementia is the lack of, or fear of, socializing. By the time I had this information, I had already pulled away from most of my friends, and no, most of them do not understand even though they are aware of my disease. Socializing has become so stressful and frightening to me, I find it very difficult. I am constantly afraid I will say or do the wrong thing or make the other people uncomfortable. It also can become confusing to me if there are too many people around, or if there is a noisy background or just too many things or conversations going on at once. I just can't handle it well, become agitated and desperate to get away or hide.
That being said, yesterday was a true gift. Good friends of ours (he worked with my husband, until my husband retired, in three different cities... Pittsburgh PA, Philadelphia PA and Charleston IL. After retirement, my husband and I returned to PA, to my home town area, while they remained in Illinois. Yesterday we were invited to our friend's parents house to visit with him and his family just two hours away. We had not seen any of them for at least two years. It was such a blessing to catch up with them. We know each other well enough that I didn't have to worry at all about what I said, what I did, if I looked like I was drunk when walking, nothing. If I had done something (or maybe I did, I'm not sure) they are the kind of people who wouldn't care one bit! There were three generations of them there, the oldest is 88 and the youngest 9 and I think we all had a really great time. But once it was time for the Steelers preseason game to begin, it was time for us to leave so they didn't miss the game. Fortunately, we were recording the game at home!
If you are dealing with someone with FTD, or any dementia most likely, it is important to keep this in mind. Try to keep social occasions in a calm, quiet place with few distractions and, if possible, in a familiar place. Perhaps point out where the restrooms are and find them a comfortable spot. Do encourage, but not pressure, them to join in and do not criticize them if they do something out of the ordinary or if they don't want to join in the activities or conversations. Reassure them that you love them and want them there with you if need be.
I am lucky that my husband understands all this. There is nothing like it, when he touches me and just asks if I'm doing okay, always with a smile!
1 comment:
That's the hardest part for us. My wife and I lit up the room when we walked in. We were the party wherever we went. Since the onset of this thing it has been very difficult being around our friends. They anticipate the gleem and joy that previously greeted them then retreat in horror at what they now see in my eyes. We don't get invites anymore. This is really difficult on my wife... Phoenix
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