Chapter 49 "There were doors all round the hall, but they were all locked, and when Alice had been all the way down one side and up the other, trying every door, she walked sadly down the middle, wondering how she was ever to get out again."

Haven't written for awhile.  It's been a tough couple of months.  I know I am in a rut.  I feel I'm losing myself to this disease.  Something I've sworn wouldn't happen.  But some days it is really tough.  My husband and I have been married for 39 years next month.  Most of those have been wonderful.  But the last sixteen have been tough!  Do I still love him?  I think so.  It's just so different.  I'm a caregiver now, and he's the person I take care of.  There isn't companionship or affection.  There isn't interest in my life.  There isn't appreciation of what I do.  In fact, there's no comprehension that anything is missing from our life or that things are different.  We were talking tonight about his appointment tomorrow morning with the neurologist.  This is the third visit to wrap up all the tests and figure out what's going on.  I asked him if there's any questions he has for the doctor.  He wants to know if he has FTD, because if he doesn't, he wants to stop wearing the wristlet he has that says "FTD:  Fight this disease" - ???  No one is making him wear it.  He put it on three years ago and has worn it every day since.   He firmly believes that nothing is wrong with him "yet" - and it doesn't matter what I say - he has left the conversation almost before it began.  So do I love him?  I love the life we had, the family life we created together - I love all the memories and the person he was.  But it is hard to wrap my head around this love - it's not like loving a parent; not like loving a child; not like loving a partner or friend.  There is no reciprocation or demonstration of love.  So it's weird.  I will always do my best to take care of him as best I can, and keep him content.  But I feel so lonely sometimes that it makes me mad! 

The loneliness sucks.  Some days I call my family or friends, and no one answers or is available, and I just want to cry.  Sometimes I'm afraid they see who it is and don't want to answer.  But I'm not calling to complain or cry.  I just want to hear about someone else's life, or talk about the weather, or some tv show, or politics even!  I need to hear about someone's more normal life and get to pretend mine is normal.  I don't want people calling and saying, "so how are you doing?" in a serious, solemn voice.  I want to hear an enthusiastic, "SO HOW YOU DOIN'?" with a smile coming through! I want my phone ringing because my kids want to talk to me!  Or someone wants to talk to ME, not the caregiver.  Sounds silly, I know.  My kids are great, but their lives have expanded and are full, right when mine feels pretty empty.  I'm so happy for them, but at the same time I hate it.  I hate that I get tired of being the one to call, and sometimes it's days before I get a call back, and I end up making some smart remarks.  It is so PETTY!   Because no one else is responsible for my happiness other than me. 

This is the time when Dave and I should be back to having fun, doing things together, making plans - partners in crime.  Instead I am a caregiver.  My time once I leave work is pretty much dictated by what Dave needs.  I know I'm allowed to do my own thing also, but I feel quite guilty. And I feel MAD!  I want a witness to my life back!  I want a partner in crime!  I want someone to help me plan the patio in the back yard, and pick the paint color for the house, someone who really cares about it and can offer a thoughtful opinion.  I want my best friend back to talk to, to worry with, to laugh with, to play cards with, to care if I had a good day.

I know I need to get in and talk with someone.  Get some balance.  Because, as I always say, I know it will only get worse, and that for now, my life is pretty great.  But there are days or weeks when the FTD is getting me too.  It truly is a family disease.   Nothing big ahead for us - so I'm back to making sure I truly understand the process of qualifying for Medicaid.  Keeping my once a month lunch with my FTD wives club!  I always look forward to that.

I'm hoping to get some clarification about the whole FTD vs encephalopathy tomorrow.  I've realized it doesn't matter what this neurologist determines.  What I struggle with is what people who's spouses have FTD struggle with.  He has all the symptoms of FTD, we have all the struggles of FTD.  And it will end the same way, no matter what the diagnosis.  I have a feeling it'll be dual - FTD and something else.  We'll see.  I need some doors to open for me.  Actually, I just need to figure out how to open them.  And I will.  Come hell or highwater.  Because I don't think I'll last long stuck where I am!