It has been awhile. I didn't contact the Cleveland Clinic for a second opinion. I felt I needed a break from FTD, or whatever this disease is. I accepted that this is my life, this is how it's going to be, that Dave is probably going to outlive me, so just get on with it. Well, that didn't work so well. I tried pushing all thoughts of FTD aside, tried to stop thinking about it a majority of the time, tried to make all this my new normal and tell myself that many, MANY people have it much worse than I do. And really, is my life so bad? Does it really matter what disease he has? This is how it is! This is the hand I've been dealt. I'm going to turn it in to a royal flush! Not.
I got tired of telling myself every day that many people are worse off. While yes, that is true, it didn't serve me very well to negate the continued grieving and loss I feel. I found myself feeling quite alone all over again, overwhelmed at facing what the rest of my life will be. I was constantly chastising myself for not being patient enough, not trying hard enough to draw the old Dave out, not being happy with the facts of my life. And once again, I found myself so disappointed in my attitude on a daily basis. Especially since things aren't so bad, right? Caught between a rock and a hard place with no way out. And sick of my whiney thoughts about poor me.
Dave's gait is getting worse - very very slow. He is having daily problems with short term memory. Comprehension of what is asked of him seems to be more difficult. He had a wound on the inside of his leg just above his ankle he showed me early in November on a Friday at 5 pm. He wasn't sure how he got it or when it started. But it was the size of a quarter, very swollen, and obviously infected. We went to Urgent Care - got an antibiotic. Went to the emergency room Sunday morning because it was looking worse. Long story short - it started to get better, shrunk to the size of a dime, but around Christmas had blown back up again. Had to go to the wound clinic every other week until March 27 when it was finally closed up and healed. It was a venous ulcer caused by venous insufficiency. Bad circulation in his legs. So he gets to wear compression knee highs now. It's been a fun last few months. We saw the neurologist this week. He wants to do another MRI - it's been three years since the last one. I'm happy to have it done to see what's happening and what further involvement there may be of different areas of the brain.
We are headed to Montana for a trip to see his family in a couple of weeks. That is where we met and got married. It's our 40th anniversary in May. His mom, at 93, has developed some serious dementia, so I thought it would be a good time before he can't travel and she gets any worse to go on a trip. I may regret it, but for now I'm looking forward to it. I have accepted that I am Dave's caretaker and the only person looking after his quality of life. I'm the keeper of his memories. I'm his working brain, basically. He wouldn't think about going to see his mom - so I need to think of it for him. He wouldn't know how to book a plane ticket, or arrange for us to stay somewhere. So I need to do it. And while sometimes it drives me crazy to have someone so dependent on me each and every day, I know he would do the same thing for me were the situations reversed.
I lose a little more of him each day - moments in our lives he doesn't remember - sometimes weeks or years. And yet he remembers that when he smoked for six years in college and a couple years after, he smoked Kools! I have been going through photos and when I find certain ones with a particular memory attached to them, I show it to him and tell him the story behind it. He says he is a happy person. I would call it content. He can sit and watch TV for hours, doze a little, and never say a thing to me. And that's ok. But every once in awhile, I am compelled to block his view, and do some crazy weird dance in front of him to what ever music is playing on the game show or commercial. At first he acts like he doesn't notice me - but I keep going! And finally he smiles a little and tells me I'm weird - and he's right! That's more like it! A smile that reaches his eyes! I love it! I've taken to doing it several times a week. It makes me laugh. I need all the laughter I can get.
We're going on five years since diagnosis, and seventeen years since he was fired from his job he had for 18 years. It's been a slow progression, a simmer rather than a rolling boil. The diagnosis is changing. We will see what is in store. I'm counting down the months til full retirement from work - it's about 47 months now. That's less time than I've been keeping this blog. I hope Dave continues to be able to maintain so I can continue to work til then, but I also can't wait to not go to work every day! I have two grandchildren now - they are far away, but with technology I get to see clips of them most days. It literally makes my day. And I'm hoping they will be coming over the 4th of July for a week. It should be great fun, and something to look forward to. I find the best way for me to get through the day is having something great to look forward to and be excited about. I tend to flounder and feel sorry for myself if I don't have that future event with some fun and meaning to look forward to. Not that taking care of my husband doesn't have meaning. It most certainly does. But it doesn't provide for much fun on a daily basis.
I hope all reading this are doing well with whatever their journey is. I'm still figuring mine out. It seems very fluid. Certainly not a straight line for very long. Never know what might be just around the next bend.
