Not quite the plan

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


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Personality change and dementia.

So, I am taking my Mom on a trip to a national park for a weekend in April.  It honestly is more for me than for her because I enjoy nature time a lot and do not get enough of it, especially in this caregiving life of mine.  And It has also just been a long winter and I thought a weekend in Spring to hopefully see some things starting to bloom would be lovely for both of us.

In response to talking about this trip, Mom told me, “I am outdoorsy.”

To fully understand the I-just-entered-the-twilight-zone nature of this statement, it is important to understand how non-outdoorsy my mother is.  She is not outdoorsy.  I am her slightly suspect daughter who finds appeal in things like camping and dirt.  I will never forget coming home from a multiday camping trip in the 7th grade in which I peeled off my dirty socks with glee as Mom watched in horror.  Mom does not hike or camp.  For Mom, a picnic on the beach involves a carefully set up picnic table well off the sand.

I cannot help but wonder what is happening in her brain to bring her to the moment of this outdoorsy idea.  Does memory loss extend to personality characteristics?  Can one forget your lifetime preferences and choices?  For a while when we were discussing possible dinner options Mom would say things to me such as “I like cheese.”  “I like pizza.”  Now I wonder how much those statements were to remind herself of her own preferences.

After Mom informed me of her newly outdoorsy self, I decided to push my luck.  I asked if she would go on a hike with me and received a clear affirmative response.  So come this April, I will be taking my 69 year old mother on what I believe will be the first hike of her life.

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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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YouTube!

Sometimes I find myself struggling  for activities that are more creative for Mom.  The other night she was feeling quite talkative after a long week in which I did not have a lot of time for her, so I was trying to make it a quality bonding evening.

Unfortunately, her stories can be hard to follow.  After listening to four attempts to tell me stories that were all slightly mystifying, including a moment of asking me whether I had ever met her husband (that would be my father!), I decided that we needed a new activity.  As we had chatted we had been watching and discussing my cat whose antics provide a lot of entertainment to Mom.  In watching my cat, I was suddenly reminded of the quality entertainment that is the crazy cat video on YouTube.  I pulled out my computer and we watched two different crazy cat videos to Mom’s absolute delight.  She was particularly amused by a ridiculous  series of cats sliding/ leaping into cereal boxes that was quite new to me.  It was wonderful to see the most genuine laughs I had gotten from Mom in months.  It used to be easier to get her laughing quickly and whether it has been my busy-ness or her declining communication abilities, there is a bit less laughter around our house.

YouTube is definitely going on my list of good activities for us.  It will be an interesting project to dig up some of the creative videos out there, so suggestions are welcome.  There is a quite a world of entertainment that Mom has yet to experience…


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No green beans for Mom.

One of our household staples has become mac n cheese which we pretend is a healthy enough dinner choice by adding mixed frozen vegetables.  Not the classiest dinner, but sometimes dinner in five minutes is what you need!

Last night, after the mac and cheese was ready, Mom informed me that she did not need any dinner.  She often believes this up until the moment that she realizes that she sure could do with an entire pint of ice cream.  I told her I understood and then served her a plate five minutes later, taking happy advantage of the short term memory loss.

Then, I watched Mom sit with her mac and cheese, carefully sorting it on her plate.  The green beans had to go, obviously!  They were immediately moved to the side of the plate.  Several — though not all — of the carrots quickly followed.   Mom’s list of acceptable and unacceptable vegetables is a serious list.  Green beans seem to have recently moved from acceptable to unacceptable– though broccoli and brussel sprouts are still solid choices.

I watched Mom pick through her food and decided that she was providing me with solid practice for raising a child one day.  I wonder if they will pick the peas and corn out of their mac and cheese as well.


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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.