Not quite the plan

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


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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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Some days I think dementia is contagious.

Like today.  Where I actually mix up words as I say them. I obviously know all the right words but I hear them coming out of my mouth in a slightly wrong order.  And it takes me three trips back upstairs to gather everything together to be ready to go to the doctor’s office.  Some days I forget things that should be easy to remember, like what book I finished just a few days before.  And it scares me.

Do not be confused.   I am not actually scared that I have dementia right now.  Odds are good that I get it one day, but my plan is to worry about that then.  But what scares me is how far my life is stretching me.  My brain can only juggle so many loose ends and unresolved questions.  I need to pick up the meds, call the assisted care place, find the missing toilet paper, pay the bills, talk to the caregiver about hours, and take the random items out of the freezer that Mom has stashed there.  And when did she last have a glass of water? 

And too, I find myself feeling that I need to remember everything I have shared with Mom since if I forget, then those memories are gone forever.  So I want to hold on to the memories of a happy family.  Of my competent mother.  

Which leaves my mind full of these memories and worries and the endless things to do.  My brain is simply too full and stretched by the crazy life of mine.  And so I find myself grasping for the right word.  Just like someone with dementia.  Just like Mom. 


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More than memory.

Mom brought up her husband, my dad today.  She rarely talks about him these days.  I asked her how often she thinks about him. Her answer — all the time.

Dad died about two and a half years ago now. For most of the first year after his death, we had to talk repeatedly about the fact that he had died. It was horribly painful conversation for both of us as I had to walk her through the whole experience to trigger the memories. And for her, it was learning anew in each conversation that he had died and having to face that pain. It was quite simply awful.

I did eventually learn which pieces of the story helped her piece together the memories. And at some point she came to know and accept that her husband of forty plus years was gone.

After that, we talked about him rarely. Sometimes we look at family photos and talk about him. But it is rarely because Mom initiates it. So it was a surprise when she brought him up herself.

These days, Mom’s grasp on reality is tenuous at best. She barely remembers things that happened moments ago, and much of the past is a blur also. Yet, she still remembers her husband and misses him — all the time. It is fascinating to realize how deeply we hold certain feelings and connections.


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Love is purple.

Mom’s memory is almost non existent these days.

So we stopped to admire the flowers on walking into the grocery store the other night. I suggested that Mom pick out a bunch. She absolutely loves flowers. I try to pick them up on occasion but it has been a little while.

Mom was delighted by the prospect of a bunch of flowers and began to look around. There were mums in various fall colors, and I pointed out a deep red since she loves red. She admired thr red roses for a monent. But Mom focused in on a purple bunch.

Purple is my sister’s favorite color and it’s one fact that Mom always remembers. When she sees purple, she always talks about my sister. The connection is deep.

So at Mom’s first chance in many months to pick out some flowers, she bought purple. Love, for Mom, comes in purple.


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Getting to know you.

One of the reasons that I wrote about Nothusband the other day is because I have been struck Mom’s relationship with him.  In spite of having only met Nothusband while navigating rather serious memory loss, Mom has a genuine friendship with him. 

In the same way that Mom tends to remember her emotions and whether it’s a good or bad day, she knows she likes Nothusband. 

This past weekend, the three of us took an excursion to a local park to enjoy a beautiful fall day.  Mom took me aside at one point to tell me what a good husband Nothusband is.  Later she found another opportunity to make the same point.

She has clearly decided that she likes him, trusts him, looks forward to spending time with him, and approves of him as a partner for me.  How does one make these assessments — or more importantly– trust them without a reliable memory?  Perhaps Nothusband was just being nice on our Sunday outing while typically acting like a selfish pig toward me?  How would Mom know? 

And yet she knows something about the people around her.  She trusts herself on this.  Mom has opinions on her caregivers and various other people who come through her life these days.  Perhaps it is the memory of what emotions they evoke in her.  Perhaps it is more of a gut feeling.  Whatever it is, it is not her memory. 


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My husband?

For my friends who read this blog, let me start by clarifying that I have not recently acquired a husband.

Yet, in Mom’s mind, some days I have.  There is a guy friend of mine who has been coming around to dinner on occasion for quite some time so Mom has gotten to know him rather well over the past years living with me.  He and I  have recently started dating under Mom’s observation.  Just barely into our dating phase, Mom was talking to me one day and mentioned something about my husband.

Husband?!

After a moment of conversation it became clear who she was referring to and that there was no way of correcting this particular confusion.   Mom has been despairing of  finding me a good guy and is satisfied with this one.  Some days Mom seems to think we have babies as well; yesterday she asked me the name of my baby boy.  I guess wishful thinking gets especially interesting when one has dementia!

So when NotHusband came over to dinner a few weeks ago, still before even some kind of relationship defining conversation, I had to explain to him as we walked up to the house that Mom had defined our relationship for us.  I warned him of his new role or roles in my life and that Mom might be using some loaded terms to describe us.  It might be at the top of the list of most awkward conversations ever.  NotHusband asked if he had missed the invitation to his wedding.  As I said, most awkward conversation ever.

Both of my parents had a tendency toward the match-making, but this takes it to a whole new level.  Mom always used to joke that she would do a better job picking out my husband and I guess at this stage she is simply done with giving me the chance to do it myself.

 

 


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Remembering it tomorrow.

Mom doesn’t remember things tomorrow anymore.   Tonight I laid next to her in bed for a while, watching Dances with Wolves, one of her favorite movies. We struggled a bit with the subtitles but she was enjoying herself.   She thanked me for hanging out.

And then she looked over and said, I won’t remember this tomorrow.  Mom is right of course.  She won’t.

I think about that when I make time to do happy or fun things with Mom.  Does it matter when she will not remember?  Who am I doing it for?   Does it matter that I make time to have quality time with her with a certain frequency, or does it not matter as much when you forget the next day?

Regardless of whether she remembers the next day, I make time.  Connecting with Mom and making her laugh is a regular priority for me.  I cannot make the time as often as I might like to lie around making silly jokes about a movie together, but I also know that these memories matter to me.  And in the moment, I know it matters to Mom.