Telephone Tribe

I’ve just read a post in the online support group for dementia caretakers that made me think. It was about how those with a diagnosis of LBD, who have been good friends with many in better years, don’t hear from their friends any more. Actually it was a caretaker writing the post, who was sad that the friends didn’t even contact her to ask how her husband was. She was wondering what their excuses were. Were they unable to handle the changes they saw in him? Were they afraid dementia was contagious, or that they would somehow get it? Did they think that their absence wouldn’t be noticed by anyone so why bother?

My husband who has Lewy Body Dementia is probably not your typical dementia victim, because he has refused to let people forget him. He calls them up if he knows their number. He hunts them down if he doesn’t know their number. He calls them again if they don’t answer the first, second, or third time he calls. He checks up on them even if they don’t check up on him. He remembers what they’ve talked about. These people are his past business associates, the members of the band he used to play in, and family members.

Many times I’ve listened to the conversations (he is always in the living room and doesn’t try to keep them private). Sometimes I cringe when I hear him repeating the same story to someone who has heard it all before. Sometimes I feel sorry for the person he calls because he talks so slowly and often has trouble hearing. Sometimes I wish he wouldn’t try to sound like an authority about other people’s problems, or misquote things he’s read, or be so simplistic about things I think are much more complex. But at the end of it all, I see that there are those people who do take his calls anyway. There are some who listen to his stories, even if somewhat impatiently, and respond with interest. Some tell him that he has encouraged them, given them hope. They are his telephone tribe.

I hear patience in their voices when they talk to him, laugh with him, ask him questions. When they don’t have time for his hour long versions, they tell him they need to go in a few minutes. They set limits in kind ways and show respect. They call him back when they say they will or apologize if they forget. They continue being good friends. They know they are doing something for him that friendship is supposed to do, and they are not afraid, not too busy, not “turned off” by the changes dementia has brought to him. I am so thankful for those friends, because they also help me. I am thankful to have married a man who chose his friends wisely. If you are this kind of friend, thank you.

Going Again: Cambodia, Night 3

Strangeness (imagine eerie music here).

Up at the computer at 3 am, may or may not be strange to you, but it is not the usual for me. I am not usually in Cambodia either, which is where I am now. Neither of those are the strangeness that I have to write about.

The strangeness is that I’ve just received a call from my realtor in Florida on my smart phone. I do not have an international calling plan, nor am I supposed to be getting calls. I normally have no phone service at all in Cambodia. I see in the corner where it usually says “NO SERVICE” it now displays “SMART”. Something new has been added, and it’s smarter than me. I wonder how much it is costing me, just sayin…