Not quite the plan

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


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Committing.

I haven’t written for a couple of weeks since I have been in the midst of the rather overwhelming process of buying a house.  It’s been several months coming but I was not really certain that I was ready to take the plunge until I made the offer.

I went and signed Mom and I up for living the foreseeable future in a 4 bedroom, 2 bathroom house with a rather nice patio.  It’s something that I have been considering since I sold Mom’s house to have her come live with me.  She has not been the biggest fan of the city apartment life though she has enjoyed some aspects, like when the St Patrick’s Day parade flowed by our windows a couple of months ago.  She talked about that for days!  But here we have street noise and not a spot of green out the windows and I question whether it’s the best place for a woman who lived most of her life in a comfortable house in the suburbs.

So, we are compromising between what I perceive to be her preferences and my own with a modest house on a cul de sac that is still central to the city.  I will be able to bus to work and walk to a farmer’s market, hardware store and a couple of bookstores.  Mom will be able to take walks around our neighborhood with me in the evening by trees and elegant houses… and possibly make it as far as one of the local ice cream shops.  And we will be able to fix up the house a bit which should tap into her previous life as an interior designer.  She already had comments on the house’s curtains so I know we are in for an adventure on house decorating!

Buying a house would be a big enough commitment under normal circumstances, but in this particular moment it feels all the more complicated.  Is this really the right place for Mom to do the rest of her aging?  I cannot know for sure, but it’s the best guess I have right now.  So, I plopped my money down and committed.


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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.


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Getting help.

Some time ago, I called a friend in the midst of a crying mini nervous breakdown about how I could not handle my life.  Her immediate response was, hire help.

As a serious do it yourselfer, I could see the wisdom of her suggestion but it seemed expensive and just not quite natural.  Well, six months or so later, and after a few different kinds of scares, I am finally taking her advice.  We just met with a home caregiver service who will be sending someone later this week.

It will be an adjustment for me but adjusting to things that do not feel normal are what this seems to be all about. And the relief of both knowing that Mom will have consistent support and me getting some help with the never-ending laundry pile is sounding more and more awesome.


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Off to the doctor?

Mom does not like the doctor.  We spent a good long time — months — fighting over whether she would be seeing any doctor at all, ever, for her very obvious memory problem after my father passed away.  I used every possible approach from flat out yelling to enthusiastic, cheerful daughter to desperate coaxing to, well, you get the picture.

Finally, she agreed with the critical caveats that the doctor had to be a male (no comment) and must be funny or she would not deign to return.  Why humor is my mother’s primary requirement for a doctor, I do not know but happily her doctor passed the test.  He even handled Mom declaring, “I do not like going to the doctor,” as her written sentence in the mental status test with some grace.

We moved some distance from our one approved doctor however so I started looking for a new one and made an appointment a few months ago.  Mom dragged her feet enough on the way to that first appointment that I scheduled with a new doctor that we finally arrived well past the appointment time window.  Mom’s resistance was so frustrating to me that I actually burst into tears in front of the receptionist who delivered the news that we would have to reschedule.  One full afternoon of my vacation time from work wasted.  So I rescheduled.  On the day of the second appointment attempt, Mom got in bed and told me she needed a nap and that she would not be going back to Finland.  Apparently our 15 minute drive had felt unacceptably lengthy to her.  That sent another afternoon of my precious vacation time down the drain.

Tomorrow is try number 3 with a doctor located a mere 5 minute drive from our house.  In fact, we might even walk.  Let’s wish me luck in getting Mom up, dressed, out the door and fully delivered to her appointment.


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Late night party girl.

I often compare my caregiving life to that of friends of mine with kiddos and one definite advantage they have is the final evening time for themselves.  (There are plenty of ways they have it harder but that’s not the point of this post.)  Mom on the other hand stays up until midnight or 1am most nights, which is a challenge because it means that I have no personal time in the evening.  I am pretty good at working on paying bills and a lot of other work while she watches TV and we usually do some chores together, but it’s not easy for me to have my own personal time in the house.  My better time is in the morning.

For most of my life, when Mom was the responsible adult that she was, she was solidly in bed reading a book by 10pm.  Now, I occasionally find myself watching TV with her at midnight and she will happily suggest another show.  We have managed to watch our way through several series, to the point that I am running out of that sweet spot of shows that we can both tolerate.  To be fair, I tend to be doing something else when we watch TV together, but I still reach my limit with some of her preferred shows.  In our first 6 months together, I started to feel that I had learned more about the British monarchy than certainly I had ever planned to know.  We worked our way through the Tudors and the probably 12 movies made about Queen Elizabeth.  The first one that is.  Queen Victoria seems to feature in quite a few films also.  At some point over the Christmas holidays, I hit my limit and told Mom we were watching a sci-fi apocalyptic show that I randomly found.  It’s not my usual choice but felt many happy miles from anything involving a royal family.

It entertains me the delight that she finds in staying up too late, watching TV.  The sense of shirking responsibility for fun does not get old, apparently even when you are retired and without a lot of daily demands.


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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.


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Ah, balance.

This post should probably be titled the complete and utter lack of balance in my life.  So, like many people, I made a new year’s resolution this year to exercise more.  The funny thing about this is that I used to be in reasonably good shape.  I have memories of biking to work, regular yoga classes, getting to the gym often enough.

I am not saying that I was perfect but I did pay attention to this area of life.  And then… So many of my stories now seem to go back to this moment.  And then my father died and everything shifted.  I think I made it to the gym twice in a one year period.  LA Fitness really got an amazing deal of out my membership, since of course, cancelling a fitness club membership was beyond my capacity for that same year!

So here I am with a new year’s resolution to go to the gym.  And I am doing it, all of once a week, when I get my pathetic self to Zumba class. As I said, the complete and utter lack of balance.  In the end I get a lot of hours at my job, some socializing there, and then Mom time.  One of my parenting friends suggested home videos but thus far, I cannot get those to stick.  When I am home, I find the to do list too staggering to focus on myself for long.

I have these lofty goals to add a second weekly class.  Craziness.  And yet, shockingly difficult.


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Calling in sick.

So, I have a full time job.  And I need it to pay the rent, the student loans and the rest of the nonsense. 

Mom no longer is interested in such things.  She likes her ice cream and watching movies with me.  Every day she asks what I am doing tomorrow and about 4 of 5 times that I say I have to go to work, she suggests that I call in sick.  She even typically suggests that she could do the call for me since I think she imagines me unable to fake sickness as effectively.  She does some terrible fake coughs to demonstrate her superior faking sick abilities. 

Sometimes it is tempting of course.  A free parentally endorsed sick pass– what I would have given for that 25 years ago!  Sometimes I wish so much that I could stay home and treasure this last mostly good period with her.  Though there’s a lot if stress for me, we spend a lot of time joking and in happy shared moments.  I know Mom treasures her time with me.  She looks forward to when I come home from work to hang out with her.  She loves holidays and snow days when I am home all day.  And mostly I do too; calling in sick for the year sometimes sounds pretty right on. 


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The lines that we cross.

The first time that I went to a support group, one of the veterans of this dementia caregiving experience who was present asked me if Mom had started wandering out of the house yet.  He encouraged me to start looking into adult day programs, a suggestion that  probably elicits in Mom an equal level of horror as moving into any type of senior community.  She thinks of herself, she reports even today, as quite independent.  

Well, yesterday one independent woman I call Mom strolled right out the front door in inappropriate winter clothing, leaving the door unlocked.  

I have absolutely no idea how long she was out of the house or what really transpired while she was out.  By some miracle, she had a fully charged cell phone with her and she picked it up when I called.  Since she rarely answers the phone, or even carries it, I am grateful for this.  I found Mom perhaps 6 blocks from our place early enough in the evening that her fingers had not yet fallen off from frost bite.  I got her home and settled in with hot coffee, dinner and pajamas.  She reported that she had talked to a lot of nice people.

For me, the whole experience was one of those dividing lines that happen in life.  Before yesterday, I still had the illusion of Mom being relatively safe.  Today, I know that she is not.  We agreed that she will wear a bracelet with my phone number as an immediate step but of course, it is not enough.  

Somehow I did appreciate the fact that she reported that at some point in her wandering she  managed to make it to a bookstore that is a preferred walk of ours– the store is about a mile from our place and we often go there in the evenings.  Mom points out to me that she found the bookstore just fine.  I point out that she did not find our house again afterward.  Her response to that was that a description that she was close, but just a little bit off.  By the description, I suppose we can say that she was just a little bit unsafe.  Oh, the reassurance.


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What we gained in the fire.

This is the name of one of my favorite songs, a song that I listened to countless times in the weeks after my father’s death.  For me, it captures the nature of grief and our struggle with mortality, a moment that I find myself in again tonight.  I sit here listening tonight to the Mynabirds:

“And I got something I don’t wanna lose.
But I’m learning to let go of you.”

My best friend- also in her mid-30s- lost her mother this week.  It makes me so sad for her, for me, for all of us who lose our parents much too early.  In the story of how life is supposed to go, our kids are supposed to grow up with grandparents.  Our parents are supposed to be there for advice, future Christmases, shared humor and memories, and simply love, for many years to come.

I wander down the hall to check on Mom, who uncharacteristically headed to bed early tonight.  I could not of course simply appreciate this but have decided to worry that this means there is something wrong with her.  She is fine.  Within a moment of me poking my head into her bedroom, Mom and I are laughing about a stupid joke.   Loss reminds me to be grateful for our middle of the night laughter.