Not quite the plan

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


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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. 

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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.


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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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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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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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How to love.

Some days are tough with Mom.  For much of the past six months, I have had a lot less time and energy for her as my work demands have increased.  At the same time, Mom’s illness has gotten only worse and communication has become quite simple.

And yet, for the time being, Mom and I can communicate in what I am coming to feel are some of the most important ways.  She feels loved.  She feels taken care of.  She knows to trust me.

I know this is not everyone’s experience with dementia and I count myself incredibly lucky to be thus far avoiding some of the bad temperedness, aggression and other symptoms that often accompany this illness.  Yet it is still hard and often heartbreaking.  I spent a lot of time this November finding myself crying in reaction to so many of my interactions with Mom.

But, the other morning my mother said probably the most beautiful thing anyone has ever said to me.  First thing in the morning when I saw Mom, she gave me a huge hug and said, “you really know how to love people.”  We both teared up as she hugged me with a long hug.

These words were a gift.  They were a gift that I know I need to lock away in a tight memory box for quickly approaching days when she can no longer express herself with words. I will need to remember this moment, for both of us.