Not quite the plan

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


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Sunglasses for Christmas.

Mom has always loved Christmas.   Christmas and Mom are such intertwined concepts for me and probably many people who know her. Mom always made Christmas special, and not just for our family.  Her version of gift giving, baking and decorating would have given Martha Stewart a run for her money, and I would bet that woman has a whole crew.  Mom’s Christmas parties were always the best.

So this was the first year where I was truly in charge of our Christmas.  Two years ago Mom was still driving to go pick out Christmas presents for me.  Last year, Mom was still the one who decorated our tree and would not let me touch it. 

And then came this year.  For the first time in my life, Christmas has really been my show.  I decorated the house, planned the menu,  bought and wrapped the gifts, sent the Christmas cards.  I was proud of holding up many of our traditions from pulling crackers to drafting a Christmas letter for the cards.

But Mom showed that she is still the one who loves Christmas most.  She came downstairs today ready for a Christmas party by accessorizing her pajamas with her sunglasses!  For much of the afternoon, after pulling it off a package, she left a bunch of curly ribbon attached to her ear as decoration.  And as we opened gifts, Mom switched to a southern drawl.  I watched my mother sport her sunglasses, toss her head to shake her ribbon decoration and perform her idea of a southern belle.  She may be having a tougher time all around these days, but Mom was still the one who brought the party on Christmas. 

Merry Christmas from a house full of chaos, but also a lot of love and laughter! 

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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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The caree still cares.

So, my sister suffers from a disability and has lived with Mom basically her entire life.  Mom has spent a substantial amount of her life energy as a caregiver to my sister, worrying about her and loving her through some serious ups and downs.

When Mom was hospitalized a few months ago– having completely passed out– when she came to in the middle of the night, she asked the nurse to call home to check on my sister. When I visited and understood her mental state later that day, I was shocked that she had been able to articulate that need to the nurse.

No matter how many other things Mom may be forgetting, she remembers to care for my sister. She asks how she is doing. She looks in on her. Mom reminds me to be gentle to Sis and how much harder life is for her. It amazes me how solid this relationship remains even as Mom forgets all else. To Sis, Mom almost consistently demonstrates compassion and concern. Today she stopped Sis to ask if she was feeling downtrodden, a question I certainly am never asked. The amount she can do may be more limited, but Mom always remembers to try.

These days of course my sister cares for Mom more than vice versa which has been a beautiful reversal. But Mom will never see it that way.

I can only conclude that love is a deep habit. My mother’s instinct to protect and shelter her younger daughter comes from her deepest feelings. It remains strong when so many other memories and thoughts fade away. I have watched as the circle of people Mom remembers tightens from the many she used to entertain and correspond with a few years ago to just remembering those closest few today.

One day the loving concern for Sis will also fade. But not without a valiant fight from Mom to keep caring as she knows only a mother can.


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Paying attention.

Another caregiver commented the other day that my blog focuses heavily on the positive side of this whole dementia caregiving journey.  Caregivers know that we have it tough– far tougher than most of our friends and other family realize.  So she is right to ask about this.

Most the of the reality of taking care of Mom at this point in life is just sad.  Especially having already lost my dad, I don’t want to be losing Mom to dementia before she sees me marry or have children.  And seeing anyone you love fade away is painful.

Besides the sense of losing Mom, I am all too aware of what I have given up to be here for her now– travel, time with friends, the ability to have a normal dating life and hope of finding a good relationship, alone time.  I really miss alone time.   Then there’s the worry of the finances of paying for Mom’s care through the end.  The question of how long this whole journey will last.   And I find myself wondering often, what will remain of me and my life on the other side?

So I write this blog to force myself to look beyond these ongoing stresses.  To pay closer attention.

Upon reflection, there is humor, love and good kinds of life learning to be found in so many of the corners of this experience.  Sometimes it’s easy to spot.  Taking Mom to the ocean and seeing her light up at putting her feet in the waves.  Joking around about my heavy wine drinking habit.  Feeling the purpose that comes in caring for someone.  And sometimes it takes more work to sift through all the emotions and find the parts that keep me hopeful or make me appreciate this time with her.  But the practice of writing this blog pushes me to do that.  It is my space to pay attention to what is here now.


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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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The sudden insight.

It was my birthday the other day.  I have low expectations for Mom on such occasions but she managed to surprise me.

Mom was up early which is a depressing new pattern, eliminating the slim window of time that I used to have for myself.  She has woken me up early every day for the past week.  Even my serious morning grumpiness does not seem to stop her!  (Even well into the dementia, Mom encountered a mug one day while we were shopping that said, “I drink coffee for your protection.”  She insisted on purchasing it for me.)

So Mom was in my room around 6am on my birthday and wanted to talk.  She told me it was a special day, much to my surprise that she remembered.  Her remembering it kind of made my birthday.  But then she wanted to talk more seriously, and told me she did not want to be an imposition.  I shrugged it off thinking she was referring to the immediate conversation but a moment later she commented that all of this was happening at the wrong time for me.  She mentioned my sister’s issues as well, which made me convinced that she was trying to communicate something bigger.

It’s impossible to be completely sure of Mom’s meaning in these kinds of conversations but I am fairly confident that she was trying to communicate that she does worry about burdening me at this point in my life.  It was a rare moment of insight for Mom.   I appreciated her being in mom role toward me and wanting to take care of me for a moment.   Though I hope she does not worry about that often, it was rather a birthday present to know that she had any concept of this.

Also, after dinner that evening she disappeared into her room to retrieve her gift for me.  She never returned, so there may possibly be something hidden away.  And if not, there certainly was a full intention.

 


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Love on a ticking clock.

For me, caregiving is about love really.  The word does not appear much in the blogs and advice article I scour late at night.  But like many others, I caregive because I love.

Over the past year, my various gripes and grudges from the past decades of imperfect parenting have fallen away.  I would not have predicted this.  Mom and I had a rocky relationship for years.  We see the world differently and have a set of wildly different values and have made some very different life choices though mine I am sure will continue to evolve. 

Some months ago, over a shared pizza dinner, I found myself looking at Mom and being surprised by how strong and simple my love for her had become.  And yet this clarity comes when the clock is moving quickly toward the complete loss of her personality.  I feel such a desire to stop time and bottle up this time with her.  Instead, in my moments of high energy I think of how to fit in one more shared cool experience or create another special moment for her.  Tonight I finished a plan for a weekend trip to the ocean, per her request for her upcoming birthday. 

Creating these moments of shared connection and joy feel so important to me.  I don’t have as much space for this part of interacting with her.  Picking up meds, getting her dinner, sorting the mail often have to trump what feels most important.

But finding the time and space to make sure that she feels loved is probably the best part of what I can do for her, and for myself, before our time together ends.