Not quite the plan

on finding my groove as a 30 something single girl and caregiver for mom with dementia


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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.

 

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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.


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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. 


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Applause.

The other day I walked in the door after work and Mom was sitting at a table near the door.  She looked up at me, beamed and began to clap her hands.

It was delightful.  How often do you get a round of applause just for walking in the door?  Somehow it felt just about right after an exasperating day at work.

But it made me think about how many of us could do with a little applause. We work in quiet ways in our homes or offices without a moment of public appreciation.  I began to picture the applause that all of us caregivers in particular deserve. 

Picture it with me.  You survive one more day of caregiving.  In your moment of finishing the day exhaustion, you watch a symphony hall worth of people leap to their feet to give you the standing ovation you deserve, just for today. 

Applause. 

Encore! 


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Nights like these.

Nights like these are not for going to sleep early.  Whether it’s the rain or the fact that it was a shower and fresh clothes day, or some other inexplicable tilting of the universe, Mom and I find ourselves hanging out in the kitchen cracking jokes tonight, so very late.  My plans to get some rest after a long day that began at 5am are set aside with only the mildest hesitation.

I have pulled out the ice cream, the good stuff that I keep hidden in the back corner of the freezer for just this kind of evening.  Mom’s delight is worth it.  Her ability to find humor in these moments amazes me.  She tells me she is cold, and I ask whether she is too cold for her ice cream.  The reaction is priceless.  She makes faces at me between mouthfuls.  She is cheerier than I have seen for weeks now.

Mom tells me my cat, also in the kitchen with us, wants dark chocolate and I pull out a bag of what is left of of the birthday chocolates Mom’s sister sent her.  We do not share any of them of course with the cat.

Suddenly, we are sitting in every kitchen as mother and daughter late at night, laughing.  Nothing feels that serious.  There is a camaraderie in the simplest of pleasures, sitting up together too late at night with treats.  This moment could be when I was a little girl eating goldfish crackers, delighted that I don’t have to go to bed yet.  Or letting Mom distract me from worries over what I should do with my life over my preferred late night meal of stacked up cheese sandwiches as a hungry teenager.  Or a night as an adult visiting home and spending that last night hanging out with Mom before heading back across the country to my busy life and months before I would see her again.  Or now where I am the one stashing the ice cream for Mom and doing the dishes as she enjoys her treat.

It is any of these times and all of them.  In the end, this is why I keep Mom at home, postponing again the inevitable.  These times are where wee find family, in kitchens over food, laughter and the ordinariness of the day.  Or the ordinariness of a night when we delightfully stay up too late, indulging ourselves as we can, lingering here for a little bit longer.  Always, hoping for just a little bit longer– before bed, before separation, before yet another change, another goodbye.


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Wrong side of the bed.

I put Mom to bed almost every night.  On occasion, she heads there herself.  Every now and then, someone other than me does the tucking in.  But for most of the past couple of years, it has been me.  When she lets me, I help her into pajamas.  I pull back the covers, take off her glasses and set them on the dresser.

Tonight she was exhausted and before I could pull back the covers, she lay down on top of the bed.  The wrong side of the bed.  Everything in me recoiled at the sight of Mom on the left side inside of the right side where she belongs.

Mom has slept on the right side of the bed, well, always.  My dad had the left and Mom had the right.  This was true through various houses and room arrangements.  And I have watched her maintain her side clearly over the past couple of years, even with no one sleeping on the other side of the bed next to her.

Until tonight.  When she lay down to go to sleep on the wrong side of the bed.  I wanted to move her and yet, nothing about that would make sense– other than it fixing for a moment my need to keep things the same that they have always been.

But things are not the same.  As of today, Mom does not remember a habit of at 45 years.


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I like what I like.

I got Mom some ice cream tonight and we sat together while she ate it.  As she was enjoying her fudge bar, my cat jumped up on the couch and began wandering over to Mom. 

While Mom is increasingly fond of my cat, she prefers not to touch her.  She likes the cat on the floor, with a nice distance between her and that fur and claws.

So Mom immediately jumped away from the cat and asked me to get her down.  I laughed and asked her why she lets my cat bother her.  Her answer,  “I like what I like.”  Mom likes the fudge bar, not the cat.  Simple.  Clear.

All of us could use that kind of clarity sometimes.  I like these things.  Not those.  I don’t like my job.  Some days I would rather read chick lit than anything more literary.  But for many of us, our likes and dislikes get swept up in our responsibilities, the compromises we make with and for with the people around us, and concepts of what we should prefer.

Some of this is good of course.  Eating Mom’s pizza and ice cream diet would be a terrible life choice for me right now.  Neither is quitting my job the right choice for the foreseeable future. 

Though most of what Mom navigates now is challenging and painful,  I envy her the clarity that at this stage, she can simply like what she likes.