Not quite the plan

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

Monthly Archives: April 2014


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Glimpses.

In college, a professor shared the sentence with us, “the way you do anything is the way you do everything.”
For some reason this concept flits through my mind constantly.  Is it true?  For some people?  Or do all of us have inconsistencies?

My mother tended toward the consistent, proving this sentence more often than not.  She was always organized, always capable, always classy, always thorough.  I am still quite capable of exhausting myself trying- always unsuccessfully- to live up to her standard.  

Most of those qualities that most defined her for so many years are gone now.  I sometimes have to remind myself that just a couple of years ago, she was the most together person I knew.  The memory fades as I assist her with increasingly basic tasks.

But this morning, I watched her pull a large bottle of orange juice out of the refrigerator.  Mom stood there with the juice, fully focused on shaking it.  It was a lengthy, thorough job.  And in that moment, Mom was fully her competent, thorough self.  That juice was properly shaken.

It is a funny thing to have noticed.  I cannot believe that I am sitting here hours later writing a blog post about a second in the kitchen making breakfast.  But it was a moment of glimpsing Mom’s quintessential nature.  And it was good to see her.  

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Pick me up and bring me home.

This morning, Mom was staggering around tired just after getting out of bed.  I asked her how she was doing and she said to me, “I am drunk.  I want to lie down on the floor and wait for someone to pick me up and bring me home.”  As she said this, she gave me a long hug, a clinging hug.

The hug reminded me a bit of a time once in high school when I was feeling overwhelmed by the changes in my life.  I don’t remember anything specific about the context, but I remember hugging Mom and wanting to stay just like that, safe, for a long time.  It may have only been a moment but in my memory of that moment, I needed to stay just like that as long as I could with her support.  It’s funny how much her hug evoked that particular memory for me.

Mom was not drunk of course since she refuses all alcohol, but saying that she is drunk is one of her preferred ways to describe her experience of dementia.  The world around her is a bit beyond her capacity.  And the comment about bringing her home made me sad.  It’s all just my interpretation of course but I hear that as Mom wanting to go be home to her self.  To her functioning self.

Having a moment like this where Mom shows me how hard this is for her makes me appreciate all the more the positive face she usually keeps on.  This was the biggest complaint I have heard from her about her dementia.  I whine an awful lot more about much smaller problems!


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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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Trash.

So I have noticed a disturbing trend over the past week or two of everyone talking about Mom in front of her.  And she feels it.  She has made a couple of comments that indicate that she is feeling dismissed or disrespected.  

Today, I had to rush off on her for a work meeting and she made a comment that she was just trash.  That one really made me sad because I think Mom has legitimate cause to feel that she is being brushed aside or not taken seriously sometimes. 

To be fair to all of us, it is difficult.  Mom communicates a lot less.  She does not have a lot of insight into her dementia or her medical history and will not be the person taking the follow up steps.  So some of these conversations have to happen around her.  Or it can be more efficient that way and especially when interacting with doctors that seems to be their preference.  But, not so long ago, Mom was consistently the most together and capable person in any group.  She feels the difference in how people treat her.

I struggle with how to keep Mom feeling respected for her life and experience while being realistic about her current  capabilities.  I should try to make more of a point to ask her opinion or defer to her where I can.  Showing her love is a part but she needs to feel respected, included, and heard too. 


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Today, I helped my Mom get dressed.

Lately, I have needed to lay out outfits for Mom a bit more, perhaps pull out clean underwear or pajamas. 

Today though, after I pulled out fresh clothes and left her to change, she called me back.  She needed help with getting her turtleneck on.  It felt confusing– where did her head and arms go?  So I helped Mom put on her shirt and pants.  She fixed her own hair though I had to help a bit with the hairband sunce she wanted it in a ponytail.  Then, I made sure she had a snack to bring along, found her purse and off we went for her doctor’s appointment. 

The experience felt normal I suppose based on having helped enough young kids change their clothes.  But it’s an odd kind of normal.


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Self care commitment.

Self care is happening.  My resevoirs are depleted and someyhing needs to change.

So, I have committed myself to 10 minute morning yoga and/ or meditation every morning for the rest of this month.  This really should be manageable every day.  (Ot at least as close as possible to that!) 

I am hoping of course to turn this into a more regular habit.   But making a long term commitment feels daunting so I am starting here. 

Let’s go self care!


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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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Boxes of photographs.

I had to clean out my parents house rather quickly after my father’s death to move Mom cross country to live with me.  It was not a pretty pack job in the few days I could manage off work.  In the midst of everything, I quickly threw every family photograph I could get my hands on into five medium sized moving boxes.  They have been sitting in the corner of Mom’s room every since.

Following my hospital scare last week, I have been feeling a lot of nostalgia.  In less than two years, my father died, my only sister’s health has been rocky and Mom was diagnosed with dementia and then scared me with a trip to the ER last week.  It’s been a tough couple of years and I am all too aware that the road ahead only gets harder.

So in thinking of all of this, it felt like the perfect time to bust out those boxes of photos from happier times.  Mom and I sat in her room for a couple of hours this evening passing cute pictures back and forth.  Sometimes she connected the cute baby or little girl with me and sometimes not.  A couple of times she asked if I had met various family members that I have known all my life.  But mostly it was lovely.  I pulled out Mom’s high school photo that I had never seen before– it was actually stunning.  There were a couple of photos from my parents’ early marriage in full 70s style.  And there were various cute ones of my father holding me as a baby or young kid that I particularly cherish now.

Just the other weekend I spent some time with a good friend who has a 6 month old baby.  I took a ton of photos of mom and baby to make sure to have some great ones for her.  And for her baby boy for when he grows up and one day finds himself looking through old photos for signs of joy and laughter.  It means the world to me now that there is so much of both to be found in these boxes!

 


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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.