Not quite the plan

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


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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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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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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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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.