Not quite the plan

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


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No one told me that.

When conversations turns to whether for instance my sister is my mother’s daughter or the daughter of someone else, Mom often comments to us, “No one told me that!”  It is clear that for her, it feels like a reasonable response to being told that she is the mother of her daughter.

Or that my sister is my sister.

Or that her husband is dead.

“No one told me that.”  It’s a strangely humorous comment from my perspective though for Mom, a fair reaction.  No one has told her that she gave birth to me some thirtysome years ago.  Never mind that up until a few months ago, she didn’t need anyone to tell her any such thing.

And she likes to use it for smaller ideas too.  Likely as a result of having much enjoyed the role of hosting people over the course of her life, Mom often talks about having a party.  According to her, we are often getting ready for a party.  And when I point out that there is no party today, I hear, “no one told me that!”  Meaning, no one told me in the my existing memory, which may extend back only a few seconds.

I am tempted to use it myself.  I am supposed to be in to work at 9am?  No one told me that!  I am supposed to submit my reports on time?  No one told me that!   You are my boss?  No one told me that!

 

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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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Appreciating Mom.

Mom told her caregiver today that she was sad that no one tells her she is doing a good job.

It has to be incredibly difficult for someone who is so accustomed to a high level of success in life to operate with the level of impairment that Mom faces at this point.  Basic communication can be challenging, and at times impossible.   Her short term memory is almost non-existent.  We have lived in our new house for a month now and Mom often needs to be redirected to make it to the correct room.

The particularly disappointing thing about her comment is her perception compared to the reality.  I deeply appreciate Mom for her good humor about it all.  She stays pleasant and upbeat, friendly and likable.  Mom continues to show caring toward the people around her.  When she is able to do things to help out, she does them without complaint.  Mom tries not to be a burden.  She makes jokes when she can.   If I ever reach the kind of functioning level that she navigates, I will be a whole lot less lovely about it.

And yet, I don’t know how often I express any of this.  I suspect that no amount of repetition would fully address Mom’s need as she likely would forget my comments of appreciation as quickly as she forgets when she last ate.  But, for my own sake too, I should tell Mom often that she is kicking butt.  (She uses that phrase when she is feeling a little edgy.)  And it’s true; anyone who can laugh this much through dementia is kicking butt.


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Tackling the stuff.

When Mom and I merged households, we found ourselves surrounded by extra plates, pots, and candlesticks.  Mom has always been a shopper and as hard as I pushed for practicality, she brought far too much stuff to my place.  She tends to hold on to things under the best of circumstances.   When I packed up her house, I was shocked by how many boxes from my childhood and teenage years remained in her garage, untouched.   After so much loss, this tendency became all the stronger.  For the first year together, few statements from me elicited a reaction as negative as her response any time I brought up the idea of making some donations or cleaning up her closet.

One weekend I managed to purge a significant set of dishes with her full agreement.  We sorted and agreed which sets to keep and which to give away.  It was a tough couple of hours but we made fair decisions.  When we got to the donations center, Mom had forgotten the agreement and fought to keep a portion of the dishes sorted to go out the door.  Exhausting.  A pile of dishes moved right back to a box in our kitchen.

After a year of tripping over those dishes and far too many linens, pillows, framed photos, and excess clothes relative to our modest apartment, I committed to purging in spite of her protestations.  I got started with sorting in earnest when she went through a hospitalization a few months ago.  It so successful and I see every time I better clean out and organize something, the Mom functions a bit more easily.

Now, it’s a silent ongoing battle waged hourly in our house.  I move four kitchen items to the donations zone.  Mom stealthily removes one without comment.  A few hours later, she brings another item over to me to explain its virtues.  I agree.  Ten minutes later, I move it back to the pile.  When donation trucks arrive, she usually fights for one or two items.  Last time she salvaged a huge box of notecards– a fascinating choice for a woman who no longer writes letters.

And yet, eager as I am to purge, I know there will come a day that I will be grateful for what remains.  Some items I hold on to claiming they matter to her.  I realize as I do, that they mattered more to the woman that Mom used to be and it makes them a bit more worth holding on to now.


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Patience, ah, patience.

Mom: “What time are we leaving?”

Me: “7pm”

Mom: “What time are we leaving?”

Me: “7pm”

And, five minutes later, “What time are we leaving?”

At some point, it gets a lot more challenging not to have that tone creep into your voice.  That tone that says, I have told you for the fourth time!  Some days, a certain tone is definitely in my voice.  A tone that says, are you kidding me?!  Stop!  I cannot do this.

Patience has never been my strongest trait.  I would describe myself as a rather impatient person, one who reads books quickly to get to the end.  So dementia has been a test, and one that I too often recognize that I am failing.  I strive for patience and yet so often it feels impossible.  And some days I hardly want to try.

On the good days though I reflect that I am building some patience muscles.  Perhaps it will pay off one day!


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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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Inspiring but also inspired.

I had put this blog to the side for the past few months as I navigated my house move and at the same time my work life exploded.  My usual work hours are crazy enough for balancing caregiving so the added work has been a real strain.

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But late last week, I got a message that gingkoguy had nominated me for a “Very Inspiring Blogger Award,” and it made me realize– hey people are reading this.  What nice news, thanks gingkoguy!  It inspired me to get myself writing again.  I have enjoyed checking out his blog.  It’s quite refreshing to hear a male caregiving voice.

The “Very Inspiring Blogger Award” is meant to be paid forward – giving homage to those bloggers who we follow for inspiration. It has rules:  1) Thank and link to the amazing person who nominated you, 2) List the rules and display the award, 3) Share seven facts about yourself, 4) Nominate 15 other amazing blogs, commenting on their posts to let them know about their nominations, and 5) Proudly display the award logo on your blog, and follow the blogger who nominated you.

So while this is feeling like a rather long blog post ever, here are seven facts about me:

(1) One of my favorite part of blogging is seeing when I get readers in India and Italy and Brazil.  It makes me happy to be reminded that we are all going through such similar – and yet distinct – journeys.

(2) My life bucket list still includes a whole lot of travel.  It’s off the table for now and I miss it but am determined to make it to many more places at some point, especially in Southeast Asia, South America and to spend more time in the Australian outback.

(3) I just bought a big old house and feel like I have stepped into some sort of dream that I now own bay windows with window seats.  Of course I also already had my first leak which was a bit less dreamy.

(4) I am now 37 and have identified as a caregiver since I was 35.  I expect this identity to last many more years of my life.

(5) Like many others who blog, I am also a serious reader.  Einstein’s Dreams is my absolute favorite book.

(6) I can give a list of my top ten books and my top ten movies.  Also my top ten favorite cities.  I very much enjoy lists.

(7) There seems to be an inverse relationship between time on WordPress and time on Facebook for me.  I would much rather be here.

And now for my nominations.  A few of the blogs that I appreciate have already been nominated but here are two favorites that definitely inspire me:

You just have to laugh:  Cathy’s blog strikes an balance tone in finding the absurd humor in caregiving while also talking about lots of the practical real challenges that we face.  Appreciate it so much, especially the humor.

Out of a Great Need:  This is a lovely blog on another kind of caregiving, for daughters with mental illnesses.  So much thought and creativity in working toward their recoveries.  And some great reflections on mindfulness and caregiving.

It’s great to recognize the way that we all inspire one another through this blogging space.  Thanks to all who inspire me!