Chapter 32 Back to my story

It's the day after Christmas and all through the house, not a creature is stirring, not even our lovely Bella!

Time to breathe!  And reflect.  I was fortunate to fly for a weekend to Florida to see my beautiful grandson, now five months old.  I can't even put into words what that was like, to hold that little guy, talk to him, make him laugh!  It was a nice treat for myself.

Then the hustle bustle of getting ready for Christmas!  Got my packages out that had to be mailed, got the tree up, wrapping done, had family over the week before Christmas - the hardest part about it all is doing it alone - without a partner - Dave and I had SO MUCH FUN getting ready for Christmas.  Dave used to play Santa at different area malls on the weekends - he knew sign language and Spanish, so he could surprise many children with his understanding of the language they might use.  And our own children would sit on his lap and never know it was him!  It was great.  And the day after Thanksgiving, we would hit the stores and shop for our kids - always on a budget - but it was a shared joy.  It's not like that anymore.  Christmas eve we went to ten o'clock mass.  I unfortunately don't go to church much anymore.  It was too much for me to sit through mass next to my husband with some of his behaviors.  Over the last year, I give him a ride, and pick him up after the service.  So we went together - just the two of us.  It was painful for me.  Embarrassing?  Yes.  Uncomfortable?  Yes.  Distracting?  Yes.  Above all, it makes me face my inability to be patient and tolerant.  Makes me feel like an awful person.  I have to face the loss and feel the grief all over again, and I hate it.  I know he can't help it, that it's not his fault.  But as hard as I try, I can't keep the anger hidden all the time - anger at the disease and what it's taken from me.  Anger at my inability to still find things about our time together to cherish.  Anger at being SO inadequate at being a compassionate caretaker of my own husband!  Who does that?  Who doesn't have patience and tolerance with their spouse they've been married to for 36 years?  If I really loved him, wouldn't this be easy?  Through sickness and in health, and all that stuff?  I am really really trying.  But not succeeding very well.  And only I know that, because only I know what is in my heart and in my head, swirling around.  Some feelings and thoughts are for myself only, because sometimes I feel I'm crossing over to the dark side.  When someone asks how Dave is doing, and I say fine - that he seems more grumpy and short tempered, and give a few examples, sometimes I hear in response, "oh, that sounds like my husband!", or "that's just because he's a man."   Really?  Come live at my house.  Come live with it 24/7.  You wouldn't be married to this person anymore.  You wouldn't recognize them, their rudeness, their lack of filter.  I can be patient and tolerant and explain why he can't do something, or shouldn't do something, or show him how to do something.  But you know what?  He's never going to grow or change from my patient explanation or demonstration.  He can't help it.  Why do I keep trying to explain things?  Because I want him to stay in our house - I want to believe he can be left alone - and down deep, I know I think something might click.  He'll get why it's important to make sure the water is turned off or why he can't just throw things away because he thinks it's garbage or why he shouldn't sign up for things he gets through the mail.  I want him to understand his health insurance that starts in January is different than what he has now.  I don't want to keep telling him over and over and over again.  Because I guess I am not a tolerant person.  I'm mad that the most cherished parts of the man I fell in love with and married and raised three wonderful children with have been stolen away by this disease.  I'm mad that it makes me feel annoyed at him.  I'm mad that I can't be the caregiver I want to be.  I'm mad that there aren't any more KODAK moments - that I can't create good memories with him.  At the beginning of this journey, just over a year ago, I pledged to make the most of each day - as it would most likely be his best day of the rest of his life as the disease progressed - but I haven't succeeded.  I haven't been able to believe that I am fortunate that he is with us.  Because he isn't.

Believe it or not, I had a nice Christmas.  This is my place to vent, to get it all out, so day to day I can try again.  It's a roller coaster ride - and I am still in a good place with myself, which makes it even more important to me to be honest with myself about how I'm feeling and how I'm handling it, and have a place to let it all out.  I am not looking for pity.  This is what it is.  The blog is my place to put it all out there, raw as it may be, so I can keep going.

There's a poem I saw on Facebook in a post from the Association of FTD.  I believe it was written by a woman who recently lost her husband to FTD.  It very much hit home for me.  I've copied it here.

The Thief

A poem by Lori Ruhlman

Well intentioned people say

"May your memories sustain you."

But they don't know loss by dementia.

They don't know that there is a thief that sometimes comes before death:

A Thief that takes someone inch-by-inch, month-by-month, year-by-long-year.

And while this thief steals greedily from the person with FTD,

it slips in and steals from those around him too,

taking their memories away one-by-one.

It reaches in and takes the finest details of what they held dear:

The feel of a touch or the sound of a laugh.  And more.

It takes memories for which there is no vocabulary, feelings too profound for labels

until all that remains are images like the flat one-dimensional memories found in a picture book.

 

So for this first holiday season without him

we won't look longingly at his empty chair at the dinner table or feel that acute but beautiful pain of his closeness

as though he just left the room.

He is much, much too far away.

 

When well-intentioned people say "May your memories sustain you,"

they unknowingly shine a light on my biggest failure, my biggest loss,

because they don't know

how long and hard I tried 

to hold onto the memories,

even as the thief came into the room.