Friday, August 26, 2016

Chapter 39 Two years and holding - 10 things I hate about FTD

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.







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