"Who are you?" said the Caterpillar. "I - I hardly know, sir, just at present."

 It seems over the last couple of years, I have truly lost sense of who I am/was/will be.  As my husband has declined and I had to quit work two years ago because he couldn't be home alone for so long, I have been identifying myself only as a caregiver in my mind.  I've already grieved the loss of who my husband used to be.  I had years of patience, years of hopefulness that I could do this.  But over the last year, I find my patience is dwindling; my feelings of resentment rear their ugly head a little more often.  As Dave requires more of my direct supervision and help beginning in the spring, whether it's with toileting, showering, laying out clean clothes each day, taking his medication, eating his breakfast, making his lunch, making his dinner, I think - what about me?  I feel guilt for feeling resentful, guilt for sitting on my back porch at night once he's settled in bed and feeling the tears well up, guilt when I meet a friend for lunch while he is at his adult day program three days a week, guilt for asking what about me?  Eleven years ago, I thought I was superwoman - that I could do this - because he probably had only 8 to 10 years to live.  But for the last year, recognizing he is pretty healthy over all, and I've been told he could go on another 20, I have been stuck there for awhile, in a state of mind that is "poor me".  I don't like this person I've become.  I think I am grieving the loss of "me" now.  My husband's symptoms started over 20 years ago, with diagnosis 11 years ago.  And it could go on for 20 more ??  His has been slowly progressing over that time.  I'm the last of the group of four that met monthly for lunch beginning about 10 years ago - we all had husbands with FTD.   Two of the group lost their husbands over the first five years we would meet.  The third person just lost her husband about a year ago - I'm the last one!  I guess we won the lottery spot on the bell curve of how long people can live with this disease!  And that's another thing I feel guilty for - how can I even think that???  Anyway, I don't know if I can do it for 20 more, not with how I feel lately.  I can see why caregivers "burn out" - and perhaps get sick and die before their spouses.   

I recently had an epiphany....a couple of months ago, I was on Facebook, looking at a page about the history of the town I grew up in and lived for another 30 years as an adult, and saw a comment made by a person that had the same name as someone I worked with at the little library across the street from where I grew up - hadn't talked with him in probably 48 years?  I reached out to him - it was him!  We texted a few times and agreed we wanted to continue the conversation and catch up.  So we've met a two times over the last couple of months - and talked about everything under the sun - except FTD and the pains of caregiving.  I did not get pitiful glances from him.  I didn't think about my caregiver role for those few hours.  I didn't feel sorry for myself.  It was kind of like getting flowers from someone for no reason - it lifts your spirits - boosts your energy - makes life a little better!  Made me realize - wait a minute - there are things I can do for me.  I can start taking care of myself, and STILL take care of Dave.  I can do things just for me - and still take care of Dave.  I deserve to have a life besides caregiving.  In fact, I'll be better at taking care of my husband if I find some things to do that I enjoy, some people to talk to about life instead of FTD.   For a few days, I've been mulling it over - feeling hopeful for my future - feeling like I do still have a life to live - it is not over, even though it sometimes feels like it.  I'm allowed to enjoy myself, treat myself, find something I enjoy doing - and I shouldn't feel guilty about it!  In fact, doing things just for me, I find I am more patient with my husband.  I don't well up with tears many evenings once my house is quiet.  I don't feel resentful having to assist my husband with so much daily living skills because I'm making sure I get a boost for myself. 

I still have life to live, people to meet, adventures to have.  I still have part of my story to write!  My obituary some day won't say "she spent the last 30 years of her life as a caregiver to her husband" - that will be one of my roles, and certainly my most important, but I have more to do.  It has helped so much over the last month to lift my spirits and to help me see that things are OK - that I can do this, as long as I take care of me too!  So simple - and so true.

I hope anyone reading this is taking care of themselves - and not feeling guilty for doing it - not feeling guilty for sometimes hating their life - because they can find a balance by living their life, continuing their story.  

Take care.  

It's been a while . . . . .

 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!