HaPpY nEw YeAr!!!
Can't believe it's 2017. It's been awhile since I've written. I've struggled with a few things. After gathering all the medical records and having them sent to the Penn FTD Center so he could be part of a research study there and have a full assessment and research MRI, it turns out the fact that he fell and developed a subdural hematoma, he doesn't qualify. Even though he had the diagnosis before! I don't get it. His fall and surgeries certainly didn't move anything along. He continues to be on a bit of a plateau and is atypical. I'm quite disappointed - I was really excited about having a full assessment done by someone who only deals with FTD, which meant I might get some confirmation or explanation about all Dave's weird symptoms and whether they are related. No help there. I haven't been able to find a new neurologist with any expertise in dementia around here, at least that I can get into in the next six months to a year! Frustrating. I'm thinking that maybe some medication would help with some of Dave's OCD behaviors. They are beginning to make me a little crazy - driving me a little mad! (Not angry - you know what I mean!)
Also, internet robots have found my blog and are racking up fake page views. I don't know why that bothers me. I guess before that, I felt good that some folks were actually reading my blog and finding it helpful, or making them feel less alone. I would get 10 or 12 page views a day. Now it's hundreds - most of them fake - from weird web sites. But it really doesn't matter. I'm writing this for me to be able to put it all out there and have a record of this journey.
I discovered a facebook page called FTD Spouses. It has been a nice support system. It's a closed group, and everyone has a spouse with FTD. I can throw a question out there and find out if others are seeing the same thing in their spouses. It has also confirmed this is a disease that varies from person to person - such vast difference, but a lot of similarities also. And it's a place to feel some fellowship, especially during the holidays.
Dave is pretty much the same, at least from my perspective. He's had a few weird episodes - about a week ago, it was 11:30 at night and he got up to use the restroom. I made sure he knew it was the middle of the night and he should come back to bed. I fell asleep, and about 20 minutes later realized he hadn't come back to bed. I went downstairs and asked him if he realized how late it was - almost midnight - he said he knew what time it was, but since he was up, he was fixing himself a boiled egg - because that's what he does on Wednesday mornings, and it was almost Wednesday morning, of course! He'd let the dog out and fed her, like he usually does at 6 in the morning! I suggested he turn off the boiling water and come back to bed, but he said he was fine and he'd just stay up - !!! At about 3:30 in the morning, he came back to bed - said he'd gotten bored - nothing was really on TV - which means Family Feud or the game show network! He'd played his computer game for an hour or so, his handheld game for another hour, and had the TV on. I don't get it. He still got up at 6 in the morning, let the dog out and fed her, and had cereal since he'd already had his boiled egg. :)
He had a weird day where he was sure he didn't put his belt on right - I checked it for him - he took it off, put it back on - it was on just how it should be - but he said it wasn't - he couldn't "feel" it on the one side. He went up and looked in the mirror - couldn't figure it out. Then realized he didn't have stuff in his pocket that he normally does - once he put things in his pocket, the world was well. A good example of how people with this disease can't quite connect the dots on things - kind of like swiss cheese - some holes in there that make it hard to figure things out.
He has some awful behaviors where he'll take a napkin or Kleenex out of the garbage to blow his nose - he doesn't want to use a new one. He doesn't wash his hands after doing this, or after pushing down the garbage. He takes things out of the wastebasket in our bathroom each day and puts them on our bed while he makes our bed. GROSS! But no matter how much of a fuss I make when I see it - which I've seen more since I've taken a couple days off with the holidays - he just can't change what he's doing. Goes to the bathroom at the same time each day whether he needs to or not, eats his snacks of crackers with peanut butter and jelly at the same time every day, greets me with a grocery list each day when I get home from work that usually has cookies and black licorice on it. And apparently as soon as I leave the house during the day to run an errand, Dave fixes himself another snack! This has been reported by my son! It is what it is.
We have everything set up with an attorney now, and have put the house in just my name, changed beneficiaries to "my probate estate" - this is in case I die before Dave - everything will be able to bypass him and go to my kids, and they'll take care of him. I have power of attorney, healthcare power of attorney, and a few other things. We got a will set up. I feel better. We are also looking at selling our house we've lived in for 24 years and moving to a small ranch with a very small mortgage. I realized that if we stay here, I won't be able to afford the mortgage payment if Dave does need to go into a nursing home because his retirement and social security would go straight to the nursing home. So this will give me some financial relief for now, as we seem to be living paycheck to paycheck no matter how much I cut out of our budget. I also will feel more comfortable about a one level house - we live in a split with four levels, and I worry about his falling. He moves slower and slower every day. Walks with a shuffle. We went to look at a house that came on the market and is close to our neighborhood, but in an area with far lower taxes - my best friend met me there - she hadn't seen Dave in awhile, and really felt there was a big change. Maybe because I see it every day, I can't gauge the changes. But he is still a very quiet guy - doesn't raise a fuss about anything - just goes along. Some folks with FTD can get quite nasty and defiant. Dave pretty much is compliant and quiet, not engaged much in the world. People still tell me "he's doing great!!!" when they see him because he talks loudly in Spanish to them, says the same thing he always does, laughs - but after that, the lights go out in his eyes - they don't seem to notice that. It's very hard for him to stay engaged or have interest in much. But we are making it work.
So, busy, busy, busy! But I've found I do better when there's a lot to do - I don't dwell on our situation living with FTD. There's too much else to think about! I'm looking forward to sort of having a fresh start in a smaller more manageable place, since I kind of have to do it all, or pay someone to do it. Plus, my daughter got engaged over the holidays! So I'll be busy helping plan a wedding for July. Haven't quite figured out how I'll pay for it! So the timing of selling the house is probably good!
I can only hope that 2017 brings us blessings of peace and contentment with our lives as they are, one day at a time.
