Friday, July 15, 2016
A really great blog you may want to check out
There's a blog I came across - Houldingon.blogspot.com - written by a woman whose husband has FTD. She just started her blog in June - there are five posts - and they are SO well done. Her name is Dawn - she has a wonderful and thoughtful way with words, and she seems to be able to find just the right way to say many of the things I try to express about this disease. If you happened upon my blog looking for someone on the same journey you're on, check out Houldingon.blogspot.com. It is excellent. I haven't read any quite like hers. Her latest entry, The Changeling, talks about the change in the person with FTD. Check it out!
Friday, July 1, 2016
Chapter 38 "It would be so nice if something made sense for a change."
We had a nice father's day. Two of my kids that live in town were talking about a barbeque - ribs, corn on the cob, watermelon. Dave wanted Kentucky Fried Chicken. He talked about it for several days when the kids asked what he would like. He was not interested in a barbeque. So they picked up some Kentucky Fried chicken - exactly what he wanted. I made a cake. We skyped with our son in Florida. It was the new normal, that's for sure.
Several weeks ago Dave fell - tripped over something in our room. He hit his head on our dresser and his knee was pretty banged up. I found this out when I got home from work - he didn't think to call me, even though he was having great difficulty walking and his face was swollen and he had a black eye. I asked him when it happened - I had talked with him at noon to check in like I always do and he didn't mention it. Yet he was fairly certain it had happened in the morning, but he just wasn't sure. When I called the family doctor because Dave felt the pain in his knee was a 10, he was worried about how hard Dave might have hit his head and the chronic subdural hematomas he had before, and suggested we go to the emergency room.
After Xrays and a CT scan, we were told nothing was broken, and there was no apparent brain bleed, thank goodness. He did get a knee stabilizer that seemed to help with the pain in his leg a little big. I wheeled him out to the car and we headed back home.
He would not put up with the knee stabilizer even for 24 hours. His knee still bothers him, but has gotten a little better each day. He hasn't been back to exercise at the senior center. He insisted on mowing the lawn two days after the fall - even though he PROMISED me he wouldn't do it. I should have known....but I give up on trying to restrict what he does. It's no use. I can't be home all the time - I don't have the option of staying home. His cheek bone and black eye looked far worse before it started healing. He still has a bruise on his face. It's visible in the video.
Now? His other leg is swollen and hurting him. The calf is swollen and tender. My concern is a blood clot. It's not red or hot - but it is very tender. If it's still a problem tomorrow, we'll head to the doctor's.
When completing the paperwork for the request for waiver of premium on his life insurance policy, it was very difficult to put into words on the few lines provided why he hasn't been able to work in a position aligned with his skills and abilities. How do I describe what he is unable to do? It's easier to explain what he used to be able to do - and the things he can't do now aren't concrete - there's no easy answers. It was very frustrating and reaffirmed to me how heinous this disease is. People think he seems just fine - physically he does ok. He has a form of dementia. But it's different - the deficits aren't what I usually associate with dementia. We'll see. I need to work on how to concisely describe the deficits and changes in an unemotional way. Just can't get there right now. It makes me feel sadness and grief all over again about how much we've lost; how much of what I know about him is gone. The one person I share so many memories with - and he doesn't remember them. Still working on creating new ones. Fun ones to overshadow the hard ones.
A few days before Father's Day, I looked up an old friend of his who is a priest and found a phone number for him. Dave went to seminary with him, and they were best buds. We used to often go up to visit him and his family over the holidays. But about ten years ago, it stopped. Dave called and left a message for John, asking him to call. Well, on Father's Day in the evening, John called! And to watch Dave talking with him - it brought tears to my eyes! I had a glimpse of my husband as he was years ago - laughing, joking, enjoying himself - so much fun! I'm hoping they might speak more often now. I told John a little about what's going on and suggested he read this blog to get a sense of what FTD is and does to a person. Dave certainly remembers John and their times at the seminary. It's funny the "frames" of his life he seems to remember well. It makes me think of a movie - where some times the film shakes or blurs - but then sharpens again. Or it breaks and has to be spliced back together - but a part is gone. I need to keep finding the parts that are still in tact and whole and hold on to those.
We're coming up on two years since we visited the neurologist for the first time in July, 2014. In August we got the diagnosis. I think he's been in a pretty decent holding pattern. I understand this can be the case with this disease. A holding pattern for a couple of years, and then a steep decline? We'll see. It's almost the end of June - 4th of July next weekend. Looking forward to a long weekend. Happy 4th of July!
Several weeks ago Dave fell - tripped over something in our room. He hit his head on our dresser and his knee was pretty banged up. I found this out when I got home from work - he didn't think to call me, even though he was having great difficulty walking and his face was swollen and he had a black eye. I asked him when it happened - I had talked with him at noon to check in like I always do and he didn't mention it. Yet he was fairly certain it had happened in the morning, but he just wasn't sure. When I called the family doctor because Dave felt the pain in his knee was a 10, he was worried about how hard Dave might have hit his head and the chronic subdural hematomas he had before, and suggested we go to the emergency room.
After Xrays and a CT scan, we were told nothing was broken, and there was no apparent brain bleed, thank goodness. He did get a knee stabilizer that seemed to help with the pain in his leg a little big. I wheeled him out to the car and we headed back home.
He would not put up with the knee stabilizer even for 24 hours. His knee still bothers him, but has gotten a little better each day. He hasn't been back to exercise at the senior center. He insisted on mowing the lawn two days after the fall - even though he PROMISED me he wouldn't do it. I should have known....but I give up on trying to restrict what he does. It's no use. I can't be home all the time - I don't have the option of staying home. His cheek bone and black eye looked far worse before it started healing. He still has a bruise on his face. It's visible in the video.
Now? His other leg is swollen and hurting him. The calf is swollen and tender. My concern is a blood clot. It's not red or hot - but it is very tender. If it's still a problem tomorrow, we'll head to the doctor's.
When completing the paperwork for the request for waiver of premium on his life insurance policy, it was very difficult to put into words on the few lines provided why he hasn't been able to work in a position aligned with his skills and abilities. How do I describe what he is unable to do? It's easier to explain what he used to be able to do - and the things he can't do now aren't concrete - there's no easy answers. It was very frustrating and reaffirmed to me how heinous this disease is. People think he seems just fine - physically he does ok. He has a form of dementia. But it's different - the deficits aren't what I usually associate with dementia. We'll see. I need to work on how to concisely describe the deficits and changes in an unemotional way. Just can't get there right now. It makes me feel sadness and grief all over again about how much we've lost; how much of what I know about him is gone. The one person I share so many memories with - and he doesn't remember them. Still working on creating new ones. Fun ones to overshadow the hard ones.
A few days before Father's Day, I looked up an old friend of his who is a priest and found a phone number for him. Dave went to seminary with him, and they were best buds. We used to often go up to visit him and his family over the holidays. But about ten years ago, it stopped. Dave called and left a message for John, asking him to call. Well, on Father's Day in the evening, John called! And to watch Dave talking with him - it brought tears to my eyes! I had a glimpse of my husband as he was years ago - laughing, joking, enjoying himself - so much fun! I'm hoping they might speak more often now. I told John a little about what's going on and suggested he read this blog to get a sense of what FTD is and does to a person. Dave certainly remembers John and their times at the seminary. It's funny the "frames" of his life he seems to remember well. It makes me think of a movie - where some times the film shakes or blurs - but then sharpens again. Or it breaks and has to be spliced back together - but a part is gone. I need to keep finding the parts that are still in tact and whole and hold on to those.
We're coming up on two years since we visited the neurologist for the first time in July, 2014. In August we got the diagnosis. I think he's been in a pretty decent holding pattern. I understand this can be the case with this disease. A holding pattern for a couple of years, and then a steep decline? We'll see. It's almost the end of June - 4th of July next weekend. Looking forward to a long weekend. Happy 4th of July!
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