It's been two years since diagnosis - probably at least 14 years since onset. Since then, things have changed, but things have not changed. What I have come up with is a list - a list of ten things I hate about FTD. Kind of silly, perhaps. And when I started it with my kids, it was mostly humorous. It led to more serious discussion. So here we go.
1. I hate that I have no time by myself in our home - never ever.
2. I hate that I have to drive everywhere - to run and pick up an onion in the middle of making dinner; or to take Dave to exercise and then pick him up, and if I need a ride to the airport, or when I get the oil changed, I have to call someone else.
3. I hate that I have to make all the decisions about everything - we always did that together - or maybe not always, but for the first 25 years of our marriage.
4. I hate that I have to educate every doctor we come in contact with about FTD.
5. I hate that there is no time line of progression, no way to know what happens next and when.
6. I hate that instead of looking forward to the future, I'm dreading what this disease will bring.
7. I hate that it has robbed us of ten years of income when we could save for retirement.
8. I hate that it has taken my husband, bit by bit, over these years til he is not the man I knew, not the man his kids knew. It's taken his inclination to be loving, affectionate, fun, and interested in me and his kids.
9. I hate that I have no witness to my life - no partner - no one to share this life with, the good and the bad; no one to talk about the early days because he doesn't remember them.
10. I hate not feeling like a wife anymore - just a caregiver; that it sometimes challenges everything I believed about myself and my capacity for tolerance, patience, and compassion.
The honeymoon is over. I have accepted that I have to let it go - I can't fix it, I can't make it better. Dave is not the same man I married. And I've taken some steps finally to take care of me. I have twice been to a support group that is about an hour away from here. I met with a woman whose husband was diagnosed in February one afternoon - and that was great - and we plan to meet again. I've finally talked with an attorney to understand our options and get things squared away. I've refinanced our house to lower our payment a couple hundred a month to give us more breathing room. And I just bought a ticket with credit card points to Florida for a little vacation with two friends - we're all turning 60 this year! - AND I'll get to visit my grandson.
Life is good. Let's face it - it could be much worse - and for now, we've been mostly stable for awhile - no driving, more memories lost, more loss of comprehension - but not too bad. He would say he's happy. And that is important. Doesn't mean that there are no bad days - there were quite a few over the past few months - lots of pity parties. But that doesn't help. The glass is half full.
It is what it is.
