So it's been five or six years. Where to begin? My husband is still chugging along. It's been eleven years since diagnosis, and twenty three years since I first knew something was wrong.
Eleven years ago when I started this blog, I felt optimistic - positive - that we would make the most of each and every day because the days were numbered.
For the most part, I have lost that "positive" attitude. I am pretty much a full time caregiver, and I know some people consider it a blessing. I think I did in the beginning - but I was able to have a life along with taking care of my husband. I have lost my footing in the journey - I have tumbled down the rabbit hole, and most of the time just feel very sorry for myself! I hate feeling that way - it is not me. But I fear it has taken over MY life. I think starting up my blog again might help me develop a new attitude. Because I certainly won't make it with my current attitude! Ugh.
It seems forever ago that I had a "support" group of three other women, all with spouses with FTD. As I feared, I am the last member of the group. I know my husband's progress has not been typical. But there's a bell shaped curve - we just happened to be at the extremely long end of things.
He has over the last few years been diagnosed with five or six auto immune diseases - but no normal corresponding symptoms. It was all diagnosed through blood work. It was explained to me that many of us could have the same results from bloodwork, but we have never been tested for it, that millions of people have autoimmune diseases, but it isn't causing them any problems. He is VERY slow in his walking - uses a cane mostly for taking a step up or down, and sometimes for balance. He has the BRCA 2 gene mutation - indicating a higher chance of cancer. We know that only because my daughter was diagnosed in 2021 when her baby was 9 months old - hers was a result of the BRCA2 gene mutation - we got tested to see who she got it from - it was from Dave. Plus he supposedly has Paraneoplastic Syndrome, which can indicate inflammation/cancer in the body. But so far no cancer. He has no memories of our marriage, our children. He knows his kids - knows me - most people who meet him think he's a sweet old guy who is very nice - what they don't know is that after "Hola!" and a few more words in Spanish, he really can't go any further with a conversation. Other than when someone is leaving, he'll say "Hasta la vista, Baby!" I have him attending an adult day program three days a week, which he likes going to and I get a break. But he needs some supervision in the shower, with clean cloths, with his meals. I have a lock on the fridge for two reasons - he would be in it all the time looking for food, and also was constantly leaving it open. He leaves the water on. He mostly just watches The GameShow Network on TV, or Big Bang Theory - I do like Big Bang Theory, but he has to have seen every episode many times! He also has one hand held old style solitaire game that he plans throughout the day until he wins. I don't even know how old it is! Maybe ten years? I better see if I can find a replacement before it stops working!
He still knows his social security number, birthdate, where he lives, etc. I also asked him just a day or two ago if he remembered the sign language ABC's - he just to be fluent years ago as he had two or three deaf clients when he was a social worker in the late 70's. HE COULD DO ALL THE ABC'S in sign language, but he doesn't remember any of our adventures as a young married couple, when our kids were born or his past jobs. AAAARGH!
The lack of empathy is the hardest. Dave was the middle child of seven children. He is now 74 - he is the only one of his brothers and sister to make it to 74. His mother died about a year and a half ago - I was in constant contact with his brother to find out how things were going - she was 97 - but Dave's only comment was that he didn't really know her any more, so he didn't feel real sad about it. When our daughter was diagnosed with cancer and was going through chemo and several surgeries, he asked me - "What is the big deal with Kristin having cancer?" I was stunned - reminded him his sister had died of cancer at 38, one of his brothers had died of cancer at 54....I don't understand.
Sorry if you happened to be reading this as I know it is a lot of word salad. I expect to get on here more often for my own sanity and to have a record of what these next years are like. I have a feeling Dave is the energizer bunny that will keep going and going and going - that I'll be the one who's batteries run out first!
As Dave would say, hasta la vista, baby!
