Not quite the plan

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


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Saying hello to friends.

When Mom sees kids, she wants to go talk to them.  The thing that I love is that she tells me that she often tells me that she is going to go say hi to her friend.

There is such a beauty in the idea that any child is her friend.  Race, gender, exact age is unimportant.  Any small person is a friend of Mom’s. Her day is brighter for seeing them. We usually spend some time waving if not having a conversation.

And no actual conversation is required. Mom connects with her friends. At the grocery store, on the street, at the farmer’s market in the rain, at the beach. Happily most parents can see her delight and genuine friendliness with their children. The woman has simply got to have the chance to say hello to her friends. And her other friend. And the one over there too!

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Glee in the house.

Mom and I used to spend so much time watching tv together.  It was a big part of our bonding, and how she passed so much of her time. 

Lately, few shows hold her attention since she cannot remember enough of the story lines to undetstand and follow.  We have tried a lot of nature shows but she tends to lose interest quickly.  Rewatching old favorites is also good sometimes.

But I experiment with various options to tey to hold her interest.  I recently tried showing her Glee, a show that she completely rejected when her mind was a bit more functional.  It is a fun show featuring high schoolers singing and dancing.

So I put Glee on and to my delight, Mom reacted to the songs and dancing.  She even got up and started dancing along.  Mom was always too inhibited for dancing so I love seeing her dance at this stage in life.  It’s a glimmer of joy. 

Tonight she did several loops of the living room, holding a roll of toilet paper, swinging her arms and bopping to Forever Young, as sung on Glee.  And she was happy. 

More Glee will be coming to our house. 


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Baby doll.

So, I was struggling a bit for Christmas presents this last Christmas and looked around for gift ideas for people living in later stage dementia. Among the various ideas, I saw mention of giving people dolls. Several people explained that it made the person with dementia happy to have a baby doll to care for. I decided to try it.

With a bit of searching on Amazon, I found a little toddler looking girl with long reddish hair that looks a lot like Mom’s hair, and decided she would be our trial baby doll.

I decided that wrapping up the baby doll with her other Christmas presents might be odd since the hope was that Mom might think of the doll as a real baby, and we know that babies don’t come wrapped up in Christmas paper. In my Christmas wrapping frenzy, I put the still boxed up doll on top of a pile in the hall closet.

The next morning, the day after Christmas, I woke up to find that the doll had been found and moved right next to Mom on the bed! So the baby girl doll clearly hit a chord. She has been living on Mom’s bed when she is not being carried around the house.

I had mixed feelings about whether it was the right time for such an item for Mom. I don’t want to insult her stage in life, and yet, more sophisticated things don’t bring her as much pleasure now.

Mom’s own reactions to the doll vary from day to day. One day Mom kept running over to give her baby doll kisses and telling me how cute she was. She often carries her around the house. Tonight though she turned to me and said, you know she’s not real? But I cannot help but think that with the chaos in my house these days, who is say what is real and what is not? I tucked Mom and her doll in for the night.


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Nostalgia trip.

Seeing that Mom is growing increasingly confused by the world around her, I decided to take her on a likely final big trip.

We road tripped it from the East Coast out to Minnesota where Mom grew up.  Her entire family still lives in Minnesota though she left I believe the same day she married my father, to move with him for his job in Ohio.  She never moved back home.   But every year, no matter where we were living, Mom took a trip to Minnesota.  She would do a whirlwind tour to see each aunt, second cousin and sibling in a week or two trip, returning exhausted and happy.

So it seemed fitting to repeat the trip with her now.  We did a test run of an overnight weekend trip a few months ago and it gave me to confidence to take on the 10 day trip.  I of course had to do all the driving, and was matching the trip up with some work meetings, so it was a 17 hour drive over 2 days for me to arrive in time for work meetings.  Which would have been fine if Mom had not spent most of the trip asking me to turn around and take her back home.  She was stressed and confused the entire drive out.

Then, we made it to the Twin Cities and started seeing family, and Mom was happier than I have seen her in a long time.  I kept the visits low key, but we saw all her siblings who were around, a few nieces and nephews and a couple of her closer cousins.  Mom kept talking about how nice it would be to live near all of them– something I am far too aware of.  We spent some long days after my father’s death weighing the pros and cons of having Mom live near her family or near me.  In retrospect the decision had to be made to keep her with me, but I often wish that I could easily find the right job for myself in Minneapolis where she would benefit from the greater community.

And let’s be clear that a woman who spent most of Baltimore’s mild past winter complaining of the cold and refusing to go outside might no longer be cut out for Minnesota!

But the trip was a dream.  The one big disappointment was taking Mom to the town where she grew up and finding that she no longer recognized the run down house as the one that she lived in as a child.  But she was shockingly able to lead me directly to her parents’ graves in the local cemetery when we stopped there to pay respects.  It continues to fascinate me which habits or deep enough memories stay with her and which things fade faster as her mind goes.

Family always mattered most to Mom, so it was wonderful to see that she recognized them all, and she spent the days in a haze of laughter and togetherness.  I am grateful that she knows she is loved by those folks and we have the photos to took at together now to remember the trip.

 


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Ice cream dance.

A few years ago, in the midst of one of the hardest few weeks my Mom ever lived through, she and I went to the grocery store.  She told me on the way there that she needed to buy her favorite kind of ice cream.

Let’s be clear how hard this time was.  Mom had lost her husband of more than 40 years, her best friend and life partner.  He had gone off to work and hours later she was flying up the freeway to the hospital to discover that he was already dead of a heart attack.  In that moment Mom lost her sense of security in life, and for a woman managing dementia, that is no small thing.  Everything about Mom’s life changed in the moment.  She had been a non-functional mess– understandably.

So we find ourselves in the grocery store and for the first moment in a few weeks, Mom looked actually happy as we headed over to find her favorite ice cream.  She was in fact so happy that she started to do a little ice cream dance with funny swinging arms right there in front of the grocery store freezer.   It was lovely, especially since Mom has always been a self conscious dancer.

Now, Mom will do an ice cream dance any time I suggest it and sometimes just spontaneously.  (Of course, actual ice cream has to be on hand to inspire the dance.)  Every time it makes me smile.  It reminds me how we can all find something to celebrate even in the hardest of times.  All of us have our version of an ice cream dance inside.

 


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Road trip!

Mom and I took advantage of my three day Easter weekend vacation from work to head to Shenandoah National Park.  It was partly a practice trip for a possible upcoming road trip I want to take to give Mom the chance to do one last visit with some family and partly just to get us out of the city.  I was hoping for a little more springtime!

It was interesting to see Mom respond to being in a beautiful setting.  She commented on so many of the flowering trees, views, and a rather spectacular sunset on Saturday night but the highlight of the trip was absolutely seeing deer up close on the road.  Mom was delighted by every deer that we passed and talked about those moments a lot later.   I was able to snap a few photos too – one of which is below- so that we can look at them and try to remember the trip later.

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The most stressful moment of the weekend came when we woke up in our hotel room on Sunday morning and Mom turned to me to ask, “where are we?”  Upon waking up she had no memory of driving up to the park which must have been incredibly disorienting.  We talked over breakfast then and I was able to gradually remind her of several of the highlights from the day before.   Overall, she had a lot of questions and commentary about everything that we saw and appeared happier than I have seen her recently.

I couldn’t help but think that the change of scenery had her a bit more stimulated than usual, in a very good way.  If nature trips are going to bring both of us so much satisfaction, then I see a  few more outings in our future.

 


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Fresh bread.

What makes us happy?  For Mom, one of the basic items that consistently leads to happiness is freshly baked bread.  At some point she started requesting the good bakery loaves every time we went to the grocery store, and talking regularly about the bread that her mother used to bake.  Her mother, my grandmother, baked fresh bread daily and memories of that are a fond part of Mom’s childhood.  though my grandmother died when I was quite young, bread making is so linked to Grandma that the smell of yeast brings up a powerful memory of her even for me.

So after a month or two of buying lots of fresh bakery bread, and hunting in vain for a really great bakery, I logged on to Amazon one day and ordered us a bread maker.  I was so excited, which entertained Mom.

Well, she was entertained right up to the point where I started pulling out steaming, fresh bread and then she just was happy.  Eating my bread, which she uses my name to describe, is a daily highlight for her.  It’s satisfying for me to have found such a simple way to tap into good feelings for her of being nurtured and cared for.  We eat a lot of bread and butter together these days, just like she did as a child.  And even for me who is being influenced as so many of us are by the notion that cutting down on gluten might be a good choice, I have to admit that fresh bread is rather amazingly delicious.  Especially when eaten late at night with a happy Mom.