Isolation

Depression has been overwhelming me for the past few days. All I can think of to explain it properly is from the words of Merle Comer and Alzheimer.net.  "Nothing prepares you for this disease. No one is prepared for the isolation. Friends disappear because the person they knew is no longer there..."

I have written several times about how those with the disease of Frontotemporal Degeneration become isolated and lonely. Just like most everyone with FTD, I have experienced this many times over. Longtime friends stop returning phone calls. Friends promise to stop and visit but never show. The invitations to events, even family events, stop coming. Either that or they arrive in the mail with a note "We know you cannot attend but wanted you to know that..."  In other words, we don't want you there, but would you please send a gift anyway. Messages are not answered, whether on the answering machine or social media. 

On one hurtful occasion, I had invited friends over for dinner. We had been talking about Mexican food and I offered to cook up my favorites. We picked a date and time a few days away. I cooked for two days and had the table decorated in a beautiful Mexican theme. You have probably guessed by now, they never showed up. My phone call asking where they were was not answered. Finally, a few hours later, I received a social media message that they were busy elsewhere. I was absolutely devastated and embarrassed. Why I felt embarrassed, I have no idea, but I was.

Over all, though, I think I have dealt with this desertion by our friends and relatives quite well. I concentrated on those who still kept in touch even if they rarely visited. When my husband's Alzheimer's Disease became more noticeable, that group of friends and family dwindled even further. He no longer heard from his best friends.  For him, sadly, it didn't affect him because he does not remember who they are anyway. 

A few days ago, I was talking to a friend via Facebook messenger. This friend and his wife have been part of our lives since we met through my daughter nearly 15 years ago. We have been through a lot together. Even after they moved about 20 miles away, we still made a point of getting together occasionally. When they would come back to our town, we would often meet up for dinner. I have always supported them, helped them when I could and considered them part of our family. 

During our conversation, I said that I hoped the next time they were in town they would stop by. I explained that we could no longer take them to dinner since neither of us can drive, but I offered to fix a meal or dessert and offered that if they picked us up, we could go to a restaurant. His answer was that they do get down here quite often but they wouldn't be stopping by. Then he quickly said that they usually come down in the late afternoon and figured that I was worn out by then. Wow! Could they be any more thoughtful than that? Was I supposed to say "Thank you for thinking of me"?  I was very thankful that it was a Facebook chat rather than in person or on the phone because I would have been speechless. I felt the rug had been pulled right out from under me. You know that feeling when it literally feels like your heart drops? I felt that. Most of our "friends" and relatives have not been so open about not caring to spend time with us. They just don't return calls until I finally get the message.

Since my aunt and uncle passed away a year ago, the only family we hear from, in addition to our daughter, is my sister, her husband and my husband's sister. My circle of friends now consists, almost exclusively, of my FTD support group friends. 

I do have an older woman who has been cleaning our house for a couple years now. She occasionally takes me to the grocery store and to doctor's appointments, even some that are nearly 100 miles away. She even stops by at least once a week to visit and check on us.  When my daughter and I attend the AFTD Education Conference in L.A. in May, she has offered to stay with my husband. I am quite thankful for that since she is the only person he feels comfortable with besides me. Notice that I introduced her here as my friend. She initially was an employee. She still is our house cleaner and I do pay her for that, but she is all anyone could want in a friend. Without her, I would feel totally isolated in our home. 

Oops, I forgot one. I recently ran into an old friend and he does call every couple weeks to check in and we do manage to get together every couple months or so. Despite him and the woman I just wrote about, I feel deserted and alone most of the time. I never, ever, believed that this would happen to me. 

I go back to the quotation I started with and believe it is correct. People desert those with FTD and other dementias because they do not understand that we are still us. Yes, we act differently now and it may be more difficult to talk with us, but we still have a lot to say. There is no reason to feel awkward to be around us. Even when you don't feel comfortable trying to converse with us, just being there helps. I promise, dementia is not contagious. even though It often feels like that is what people believe.