Not quite the plan

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

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Christmas cards.

So, I was out with Mom the weekend after Thanksgiving and came across some beautiful Christmas cards on sale.  I suggested that we buy them and she agreed.  After a moment of hesitation in the store we picked up several packs in line with our family’s tradition of sending lots of cards.

I knew that card writing would need to be a joint project.  So, we pulled out her address book and got started.  It was harder than I had expected.  Mom remembers the closest people in her life — the friends of many years and the family.  Friends who were most recent acquaintances or closer to my father seem forgotten at this point.  I spent a lot of time reminding her of people but gradually concluded that we should just send cards to the people that she remembers.  Even that was difficult as she was uncertain of what to write on the cards.  I debated whether to skip the whole project but I had felt that it was likely the last year that such a thing would be possible.  So we pushed ahead.

These kinds of moments bring out such opposing feelings for me.  Is it better to push Mom a little?  Or is it better to let the harder things quietly move into her past?  Both approaches make sense but obviously I can only choose one in each situation.

We only made it through about 20 cards and that was a tough afternoon.  We will not get cards out to all the folks that we would like to send them to this year.  As I write that though I realize that the “we” is a little fuzzy.  I guess the “we” that I carry around is my sense of what Mom would have wanted when she was normal.  I have spent some time in my life sorting through her high expectations and standards which are are not always possible to live up to.  Only my incredibly functional mother could meet those kinds of expectations.  It strikes me that I probably should be gentle inflicting Mom’s own standards on her self of now.


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Visiting the office.

Tonight Mom and I were out running errands and I needed to stop by my office to pick up a file I had forgotten.  I suggested that she come in with me rather than sitting in the cold car.

The visit quickly brought back memories of my own visits to my father’s office as a little kid.  Mom hopped on one of the office swivel chairs and started spinning around.  She was enjoying herself.  We looked at a couple of the things up on my walls and discussed them and how they related to my job.  It was a nice bonding moment and yet raised the changed roles between us in a rather pronounced way.

The better moment of the evening came though because I introduced Mom to one of my colleagues who was working late.  After we left, I told Mom a little more about the woman she had just met and explained that I am her boss.  Mom looked at me and remarked, “you are the boss of a lot of people,” clearly including herself in that list.  She liked this comment so much she started clapping.

I would not have used “boss” as a description of my relationship to Mom but I suppose it is a fair point.  If so, Mom is definitely the most challenging of the people I supervise.  Thankfully, she is also the funniest.

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A sweet benefit.

As I have mentioned, Mom loves the ice cream.  Last night at dinner, she ate half a carton of ice cream and then we headed out to do some errands.

In the car she mentioned that when we arrived home she planned to have some ice cream.  Enter daughter diet enforcer.  I told her she was not having ice cream for the second time in one day.  She asked, “when did I have ice cream?”  to which I explained that she had eaten it after dinner.  Without hesitation she responded, “I don’t remember.”

It was dark in the car, but it looked like Mom was laughing over there.  Most of the time Mom truly does not remember, but in that moment I was certain that she did or at least that she had happily decided to take full advantage of her memory gap.  Mom was enjoying this moment, I could tell.   She was happy to pretend that she did not remember and eat the ice cream a second time.

For a moment at least Mom was finding some pleasure in the lack of memory.


Hair and nails.

Mom was always a polished woman.  Her hair was dyed and coiffed, makeup smooth, nails long, red and shiny.  She likes to match colors and usually had shoes, purse, belt and earrings all neatly coordinated.  Even in the early stages of memory loss, she maintained this level of appearance.

Now it is a lot harder.  She no longer drives, and amidst everything else that I do, I have not taken Mom to a salon for a while.  For the first time in her life, the grey is seriously showing.  I no longer take her to a nail place so she paints her own nails at home and does not do the best job of it.  It’s a dilemma to me whether I should prioritize this more given her self image of a lifetime.  Or whether it’s okay to let this go on the not quite as important list.  Hair and nails are lower on my personal priority list but Mom was always different from me in this way.  I wonder what others do about this particular issue.  Sometimes I tell her we should go get this done and she says that she will do it tomorrow, or next week, or that she needs to let it grow more before getting it done.  This last response from her confuses me so I just let it be.

With the delays in visiting a salon her hair is growing out a bit and Mom is getting more creative with her hair styles.  I bought her a pack of different colored headbands and she likes to match them to her outfit.  She also found some hair clips and uses them quite generously.  I find it really cute but I don’t know that “cute” is her ideal look at almost 70.

We have agreed that I am taking her to a holiday party in a couple of weeks and this discussion led to an immediate assessment from her that she needed to get her hair done.   I think she is right.  The party will be the biggest social event she has attended in a long time.  Good hair is a solid start.  Maybe we will get bright red manicures together too.

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Just a couple of drunk girls.

Mom has always had a good sense of humor and the dementia has made jokes one of the primary ways that she relates to me.  We have a set of running jokes around the house, her favorite probably being her alcoholic daughter — moi.  Mom is a non-drinker.  I am nowhere near having an alcohol problem but it’s a well established joke now.  When I pick up a bottle of wine at the store, we kid about how quickly I will drink it.  Even better is if I buy a couple of bottles because then the fact that I am going to drink it all in 10 minutes is even more hilarious.  In Mom’s mind, there are virtually unlimited opportunities to make jokes about my excessive alcohol consumption.

To be fair, sometimes I think the wine talk is partly her recognition of the stress that I do have and an acknowledgement that I need to relax more.  Mom seems to really enjoy filling up my wine glass, usually far more than the splash that I tend to drink with dinner.  It’s sweet, especially when she runs off to find the bottle and pour it for me.  She does no meal preparation for herself and tends to be quite happy for me to cook, bake, set the table, and serve everything directly to her.  But then she will get up to pour me some wine.  

Lately though, the joke has taken a new turn.  Mom has started complaining to me that she feels drunk herself first thing in the morning.  I interpret this as her way of explaining the fogginess in her brain but it is somehow creating a bonding moment for us.  I get to joke that we are both stumbling around drunk.  Neither of us have been drinking a bit that time of day, but the joke works for us.

And in a weird way it’s true.  Both of us are a bit out of our element in life right now and making all sorts of mistakes.  I guess we are just a couple of drunk girls, living in an apartment in the city.

With this in mind, I tell her that she is a fun roommate. She laughs.

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Down in the dungeon.

My mother has spent the past year or so dealing with my father’s death.  It’s hard for me to even have a glimmer of what that must feel like after a happy, loving lifetime together.  She lost her best friend, life partner, father of her children, security, caregiver.  It has been hard to even watch her through this grief.

Today we were talking about someone she knows who lost their spouse and Mom described that they were “down in the dungeon.”  Somehow I really liked that, as I am fond of many of her mashed up phrases and replacement words.  For instance, Mom couldn’t think of the word for magazine one day and came up with “newspaper-book” which was quite right.

But this one I particularly appreciated.  Down further than the dumps, right down in an isolated dungeon with no light or hope.  It’s probably a fair description of the power of Mom’s feelings and the feelings of many of us when we experience a profound grief.  And her grief has clearly not been helped by her brain’s inability to remember and process what has happened.   Or her limited ability to communicate it to others for support.

Lately though, Mom is showing signs of being a bit less sad and more emotionally healthy again.  So here’s hoping that even for those with dementia, that over time one can move out from the deep dungeon grief to the at least the regular old dumps.


Ice cream and cookies.

Once upon a time my mother was someone who ate very healthy food.  My father was a health nut and my mother tended to follow suit.  Most of her life while I have known her, she ate a lot of salad and vegetables, lean meats, healthful cereal.  

Then, she got dementia and things changed.  

The other day I came home late and asked what I should make for dinner.  (I do all the cooking for her now.)  Mom told me she had already eaten dinner and I asked what she had.  “Ice cream.”  Apparently, the ice cream had filled her up and she was not interested in regular food.  

Sometime this past year, ice cream has become Mom’s staple food of choice.  If she goes to the grocery store alone, she will come home with at least two cartons of ice cream and usually a lot of fruit.  When I worry aloud to her about her food choices, she tells me that ice cream is good for her, usually while laughing and smiling.  I know it makes her happy which is of course a good thing.  But it also worries me that daily consumption of a carton of ice cream is certainly not ideal for someone whose brain has been impacted by cholesterol.  And with the short term memory problems, sometimes I realize that she has eaten ice cream multiple times per day.  I learned rather quickly NOT to buy ice cream at Costco.  The huge boxes would disappear in a few days!    

My newest effort to cut down on the ice cream is with cookies.  I am baking them myself and bringing them to her hot out of the oven.  Cookies seem to be about as satisfying as the ice cream but it’s easier to keep the portion size in check by baking just a few at a time.  But it does seem that in her ideal world, we would eat both on a regular basis.  

For now, we seem to have reached a happy medium of some ice cream, some cookies, some worrying daughter and a lot of chocolate induced smiles from Mom.