Always dancing.

My father loved to dance.  He was always first on the dance floor at a party or wedding.  I will never forget him dragging me out on an empty dance floor at my high school father daughter dance night.  He had looked forward to that very much and had made me a deal about attending together.  I was less enthusiastic about though lost my dancing self consciousness as a young adult. 

My mother though never did.  She and my father at some point took ballroom dance lessons together, which I think suited her.  She could tap out the beats of a waltz. 

And yet, since arriving at this particular stage of dementia, Mom cannot seem to stop dancing.  A freestyling, so what if there is no music kind of way.  One day recently, Mom and I were looking at a magazine together and saw an image of a drum set.  She immediately suggested we dance.  So dance we did, me twirling her and her twirling me.  Sometimes there is finger snapping too. 

Most of the time, I am grateful that my dad missed seeing Mom go downhill like this.  Sis and I are agreed that it would have broken his heart too much too bear.  And yet, I wish he could have danced with her like this– confidently, with music only in their imaginations, through the assisted living halls. 

Holidays, assisted living style.

Well, much time has passed since I last posted here.  It’s been a blur of taking more time for myself including several trips, reinitiating my relationship with Nothusband, and job hunting for a new role.  Suddenly, though I find myself facing the complicated question of what to do about Christmas for Mom.  And for me.

Thanksgiving was both easy and hard.  It was hard to accept that holidays are simply going to look different from here on out.  But it was easy to find a way to be together. Sis, Nothusband and I cooked and brought her a plate of food and a bunch of fall flowers.  I bundled Mom up for a walk together. 

But Christmas is a whole other story.  Just four years ago, Mom would decorate a house full of Christmas trees, throw a couple of parties, shop for towers of Christmas gifts and do enough baking to give most of her acquaintances a box of cookies.  She loves Christmas. 

So the other night after work, Sis and I trekked up to the facility with an artificial tree, nonbreakable ornaments, and a box of other decorations.  It was a happy evening though I could not help but feel the difference for Mom as I hung every ornament on her tree.  But Mom was delighted.  I think of her comment to me years ago, when I asked why she put so much work into Christmas decorations.

“When I am near a Christmas tree, I am happy.”

Some things stay the same.

I was of course nervous for my first visit to Mom at the facility.  She had been so reluctant walking in and had always expressed opposition to the inevitable move. 

But I was pleasantly surprised.  Mom was in a good mood.  We sat together and chatted in our usual way of some sense and some nonsense.  And then, out of the blue, Mom corrected my grammar in her best imperious schoolteacher tone. 

And suddenly all felt right with the world.  Mom was herself, we were connecting and we were both okay. 

It amazes me these glimpses of Mom as she always was.  She is still herself underneath all the messiness in her brain.

But to update, now it has been a couple of weeks and things are good.  Mom has some particular buddies at the facility.  She knows which room is hers.  And one tired daughter gets to go out at night again!

Home sweet home.

Today was the assisted living move in day so of course, between work, regular mom care, and never ending paperwork for the facility, I found myself fixing up her new room at 11pm last night. 

It was a strange project to fix up Mom’s small new room.  I put together a couple of photo displays and did my best to channel her interior design genes– which I lack! 

And yet after my best efforts it felt small and a bit bare.  I am sure that I will bring more items over time as I get a sense of what works well. 

Do people have suggestions for how to make a room like this cozier? 

I follow her.

So Mom and I had her admissions interview at the facility this morning.  Is this how parents feel at their children’s school assessments?  It was a weird anxiety to present her well, make sure they saw how lovely she is. 

Happily, Mom did great.  She failed miserably to answer lots of the questions to test her cognitive skills– but her personality came through. She was pleasant, happy, connected with the admissions person and even made a joke.  I sat feeling like a proud momma. 

But my favorite moment was when Mom was asked who I was.  What was my name, or our relationship?  She struggled.  She knew it was an important question.  Finally, she figured out the answer:  “I follow her.”

Somehow I loved that response.  It was not that I am her daughter or sister or friend, all terms that she has used.  Not my name though she knows it most of the time.  But a real description of our relationship these days. 

Once I followed Mom.  Now Mom follows me. 

A shopping trip with weight.

So, I had a list of errands to do yesterday.  Target.  Bed Bath and Beyond.  Michael’s.  Staples.  A relatively normal list of stores to run through on a Sunday afternoon.

And yet, halfway through the third store, the heaviness started to sink in.  The shopping trip was to pick up items to make Mom’s room at the new facility a little nicer or more organized.  On my list: a label maker to mark her belongings.  A couple more pairs of pants that fit to be sure she has enough clothes between laundry loads.  A cheap wall hanging picture frame that will hold several family photos on her wall.  A set of pretty sheets to fit a twin bed.

If you have been reading this blog for a while now, you will know that I have procrastinated this day.  But it’s arriving and I am trying to be prepared.

Buying the stuff of course is the easy part of the preparation.  Accepting that I will henceforth see Mom in a small locked facility and that she will likely end her life in such a place is a whole other thing to prepare for.  I know I am not ready.  This feels too much to be the beginning of the end. And who among us are ready to accept the end?  Who is ready to drop off the person who loved you and supported you, and say, these strangers will care for you now?

I do not regret the decision, but I regret the circumstances that bring me here.  It saddens me that we don’t know how to do better.  And that my life circumstances are such that I cannot do more.  

So, I buy soft new sheets and fake flowers to decorate Mom’s new room.  At least my once upon a time an interior designer mother will see some beauty in this increasing isolation.

Not necessary

In the midst of a recent conversation that did not make sense, Mom reached over to my bowl at the dinner table, pointed at it and said, this says, I am not necessary.

Once, Mom was quite necessary.  She was a mother of two, a small business owner, a friend, a wife, a sister, the member of her family who knew what was happening with every cousin and great aunt.  She organized events at our church and once upon a very long time ago, at my schools.  She threw great parties.  She maintained a beautiful home.

The productive version of Mom though has faded away.  When we first started living together, she would iron and do dishes for our house.  She felt that she contributed.  Gradually this has become harder until now when she simply feels unnecessary.

I know that when I go running out the door after a two minute morning talk, that Mom probably does not feel how much value I put on our exchanges.  But, I still need Mom.  Sure, she is no longer actually doing anything for me.  But being can be more important than doing– though it is perhaps less valued in our frenetically busy culture.

But I look forward to seeing Mom and knowing that she is safe and well.  We still laugh together.  She is still my mother and my friend.  I still need whatever part of her that remains with us, as long as possible.

Thinking of Dad.

With father’s day this past weekend, I was of course thinking of my father.  I thought about digging out a photo of us together to post on facebook or doing one of the other small tributes that people do.  But none of them felt quite right for my third father’s day without him.

Then, I came across an article on what a caregiver learned from his father.  It inspired me write my own reflection on what I learned from my father that makes me the caregiver I am today.  My father was a caregiver for my sister for many years, and had begun to care for Mom, so I had his example to live up to when the caregiving responsibilities passed to me.  So here goes:

1. Keep it fun.  One of my dad’s best characteristics was his sense of fun and humor.  He always had a joke or way to lighten the situation and connect with all the people around him.  In taking care of Mom these days, using humor is one of the best ways I have found to reach her.  Even as conversation fails, she responds to silliness, joking tones and funny internet videos.  Sometimes even my most pathetic attempts at these elicit Mom’s biggest smiles.  She still loves to laugh.  I am grateful for Dad’s lifetime lessons in using humor.

2. Get things done.  Dad was always working and in motion.  He never lazed around or talked about his need for rest, the way I often do!  When dinner was over, he was up doing dishes.  When something needed to be fixed, he was heading for his toolbox.  Sometimes this feels challenging to me, but thinking of him inspires me to make the effort on some of my more tired days.

3. Stay committed.  I often remember a conversation with Dad about my sister when she was doing poorly.  He told me– taking care of her is my job.  I start at this time and end at this time every day.  That is what I do.  There was something so strong in this.  When I have days that I really feel that I have no more energy for my family, I think of these words.  It’s my job.  One that I committed to, and recommit to day after day.

Obviously if Dad was still here, these past few years would not have been nearly as challenging.  He and I could have supported one another through this time.  Sometimes of course I wish things had played out that way.

And yet, he gave me so many strengths and values to draw on that have guided the caregiver I have tried to be.  And it feels like a appropriate father’s day tribute to think of this.

 

Roses.

I stopped by the grocery store on my way home tonight to pick up a couple of things.  And, was greeted by beautiful bunches of red roses.  I could not help but wonder when Mom had last received some red roses — her favorite flowers.  Dad used to buy them for her at least on Valentine’s Day if not other times in the year.  Since he died, there have been a lot less flowers in her life.

So I spontaneously bought a bunch and brought them home.  I struggle often with finding things that actually reach her in her current state.

Mom was in awe of her flowers.  She carried them around and held them while she sat on the couch for a while.  We brought them to the table for dinner and then moved them back to the living room.  It’s one of the better things I have given Mom in the past year.  A beautiful little reminder of being loved.

Hungry but holding back.

Sis gave Mom an early salad dinner tonight so when I sat down to eat a few hours later, Mom joined me at the table.   When asked if she was hungry,  she pronounced herself starving.

I poured her some orange juice and grabbed a handful of nuts.  Mom has put on a lot of weight recently so we are trying to be thoughtful about healthier choices.  Mom finished everything and I asked whether she wanted more.

Her response, “No, I am healthy.”  Which in Mom talk means that she is trying to be careful of how much she eats. 

In spite of increasingly advanced dementia, Mom still shows awareness that she should be careful of what she eats and weighs.  Given how many issues no longer concern her, the occasional attention to her weight stands out.  It turns out to be one of those deeper lifetime habits. 

It is not quite enough to stop the ice cream snacks but in her seventies with dementia Mom still thinks she should be trying to stay slim.