Not quite the plan

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

Tag Archives: dementia


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The pleasure of paper products.

If Costco understood my household, they would love Mom.  The woman’s ability to use up paper products is astounding.  I remember once when I was living on my own and Mom came to visit for Thanksgiving, she went to do “a little shopping” for me.  She showed back up at my house with the largest pack of paper towels a person could ever need!  At least, that was my naive twenty something opinion.   At the time, I stashed the rolls away in a cabinet where they barely fit and didn’t need to buy more paper towels for a year.

Since Mom has moved in with me, I have come to better understand the jumbo paper towel package.  Our household of three goes through that in no time at all.  It would seem that to Mom, everything is made better by the addition of some kind of paper product.

As her dementia has worsened, this tendency seems all the stronger.  She covers things with paper towels and tissues and wraps up various household items.  It’s sometimes a fun game to see what Mom has wrapped up as a surprise.  I restock several rolls of toilet paper in the bathroom only to find not a one just a day later.  Every pocket must be checked when doing Mom’s laundry as there are tissues in every possible crevice.

My attempts to encourage the use of washable towels are rather pathetic in the face of this level of paper product enthusiasm.

So, every time I go shopping now, I find myself dragging home the largest packs of paper products I can find, only to repeat a month later.  I just wish I could say that this abundance of paper towels was keeping our house a bit more spotless!

 

 

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What makes it home?

A few weekends ago, I took the family to a cabin in the woods overlooking a lake.  I was hoping for a simple relaxing time together where I could read my book, build a fire, cook us a few nice meals.  I found a simple state park and booked us there without giving it a lot of thought.

Upon showing up, Mom expressed that we were “in Minnesota,” her home state and spent the weekend delighted by the lake, the deer, the few remaining fall leaves on the mostly bare trees around us.  Whatever it was that triggered the feeling of being in Minnesota, I cannot be certain.  But Mom was happy.  She spent much of the weekend in a rocking chair in front of my efforts to build a fire — pathetic the first night and better the second night!

I suspect that the feel of a small space shared with family in the beginnings of winter evoked deep memories of her childhood in that cold state.  Of course perhaps that is her crazy daughter over analyzing the world. It may have been simply seeing the lake outside.

Mom often requests to go home. I don’t know exactly what she is hoping for in that home, but apparently we found it for a weekend. Minnesota is not such a long drive after all.


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Sunglasses for Christmas.

Mom has always loved Christmas.   Christmas and Mom are such intertwined concepts for me and probably many people who know her. Mom always made Christmas special, and not just for our family.  Her version of gift giving, baking and decorating would have given Martha Stewart a run for her money, and I would bet that woman has a whole crew.  Mom’s Christmas parties were always the best.

So this was the first year where I was truly in charge of our Christmas.  Two years ago Mom was still driving to go pick out Christmas presents for me.  Last year, Mom was still the one who decorated our tree and would not let me touch it. 

And then came this year.  For the first time in my life, Christmas has really been my show.  I decorated the house, planned the menu,  bought and wrapped the gifts, sent the Christmas cards.  I was proud of holding up many of our traditions from pulling crackers to drafting a Christmas letter for the cards.

But Mom showed that she is still the one who loves Christmas most.  She came downstairs today ready for a Christmas party by accessorizing her pajamas with her sunglasses!  For much of the afternoon, after pulling it off a package, she left a bunch of curly ribbon attached to her ear as decoration.  And as we opened gifts, Mom switched to a southern drawl.  I watched my mother sport her sunglasses, toss her head to shake her ribbon decoration and perform her idea of a southern belle.  She may be having a tougher time all around these days, but Mom was still the one who brought the party on Christmas. 

Merry Christmas from a house full of chaos, but also a lot of love and laughter! 


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Trust.

Mom and I have had various moments over the past couple of years. There was the time that she was upset with me, had a hallucination that I threw an animal in her face and spent a few days furious and hurt in a way that was impossible to address with logic.  There was the time that she was so suspicious of something that I had done that she refused to take her meds from me one night, which is not in Mom’s typical behavior and started a panic that it would become a pattern.

Though these incidents have been rare, it has often struck me that these kinds of incidents could worsen as her confusion increases. And they make me incredibly sad, especially that she does not always feel the level of care I have shown for her.

Lately we have not had moments like these.  Rather she has frequently expressed appreciation to me for things that I do, which is of course always lovely to hear.  But last night was a particularly interesting moment of this.  I had a really interrupted night of sleep – trouble falling asleep, waking up at 3am for no apparent reason. Some time after that, I woke to sounds of Mom walking down the hallway with its creaky old wooden floor. It does have the advantage of alerting me when Mom is up! Too tired too investigate, I hoped she would not get into any trouble. But the creaking continued to my room and I opened my eyes to a very upset Mom. She was terrified by some dream or hallucination.

We returned to her room and put her back to bed. After a few words of reassurance, she said to me, I trust you completely.Beautiful words from someone losing her grasp on reality in the frightening way that Mom is.


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Chasing Halloween.

I was delighted to realize in the middle of last week that my new house on a cute residential block of the city might actually get some trick or treating action.  Having mostly lived in city apartments, children in costumes rarely show up at my door.

Mom of course was delighted by Halloween. Chocolate and children are two of her favorite things! She started the day right by carving a rather attractive jack o lantern.

But the highlight was when the kids began to arrive. I have rarely seen Mom so happy. Every child that showed up got a rather significant handful of candy, and Mom usually concluded that it was still insufficient so went chasing after them to give them even more.

A few years ago, I could never have expected that I would one day be spending my Halloween chasing my mother down our street. And I definitely could not have predicted that doing so would be so much fun.


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Getting to know you.

One of the reasons that I wrote about Nothusband the other day is because I have been struck Mom’s relationship with him.  In spite of having only met Nothusband while navigating rather serious memory loss, Mom has a genuine friendship with him. 

In the same way that Mom tends to remember her emotions and whether it’s a good or bad day, she knows she likes Nothusband. 

This past weekend, the three of us took an excursion to a local park to enjoy a beautiful fall day.  Mom took me aside at one point to tell me what a good husband Nothusband is.  Later she found another opportunity to make the same point.

She has clearly decided that she likes him, trusts him, looks forward to spending time with him, and approves of him as a partner for me.  How does one make these assessments — or more importantly– trust them without a reliable memory?  Perhaps Nothusband was just being nice on our Sunday outing while typically acting like a selfish pig toward me?  How would Mom know? 

And yet she knows something about the people around her.  She trusts herself on this.  Mom has opinions on her caregivers and various other people who come through her life these days.  Perhaps it is the memory of what emotions they evoke in her.  Perhaps it is more of a gut feeling.  Whatever it is, it is not her memory. 


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My husband?

For my friends who read this blog, let me start by clarifying that I have not recently acquired a husband.

Yet, in Mom’s mind, some days I have.  There is a guy friend of mine who has been coming around to dinner on occasion for quite some time so Mom has gotten to know him rather well over the past years living with me.  He and I  have recently started dating under Mom’s observation.  Just barely into our dating phase, Mom was talking to me one day and mentioned something about my husband.

Husband?!

After a moment of conversation it became clear who she was referring to and that there was no way of correcting this particular confusion.   Mom has been despairing of  finding me a good guy and is satisfied with this one.  Some days Mom seems to think we have babies as well; yesterday she asked me the name of my baby boy.  I guess wishful thinking gets especially interesting when one has dementia!

So when NotHusband came over to dinner a few weeks ago, still before even some kind of relationship defining conversation, I had to explain to him as we walked up to the house that Mom had defined our relationship for us.  I warned him of his new role or roles in my life and that Mom might be using some loaded terms to describe us.  It might be at the top of the list of most awkward conversations ever.  NotHusband asked if he had missed the invitation to his wedding.  As I said, most awkward conversation ever.

Both of my parents had a tendency toward the match-making, but this takes it to a whole new level.  Mom always used to joke that she would do a better job picking out my husband and I guess at this stage she is simply done with giving me the chance to do it myself.

 

 


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Remembering it tomorrow.

Mom doesn’t remember things tomorrow anymore.   Tonight I laid next to her in bed for a while, watching Dances with Wolves, one of her favorite movies. We struggled a bit with the subtitles but she was enjoying herself.   She thanked me for hanging out.

And then she looked over and said, I won’t remember this tomorrow.  Mom is right of course.  She won’t.

I think about that when I make time to do happy or fun things with Mom.  Does it matter when she will not remember?  Who am I doing it for?   Does it matter that I make time to have quality time with her with a certain frequency, or does it not matter as much when you forget the next day?

Regardless of whether she remembers the next day, I make time.  Connecting with Mom and making her laugh is a regular priority for me.  I cannot make the time as often as I might like to lie around making silly jokes about a movie together, but I also know that these memories matter to me.  And in the moment, I know it matters to Mom.

 


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Our organized living room.

Our living room apparently is a prime spot in Mom’s need for organization. Mom always was a highly organized person and now feels an ongoing need to engage in organizing type activities.

So, when Mom gets her hands in it, mail is organized into boxes to be taped shut. Worn clothes are organized back into the drawers. Clean clothes are organized out of drawers and into neat piles on Mom’s bed.

The one that most fascinates me is the living room. It is the place that Mom most focuses her organizing energy. So many things are organized onto our coffee table: a childhood toy of mine, items from my toolbox, photos, jewelry. The living room seems to exert a strange magnetic pull over items from around the house. Sometimes bags of clean clothes drift down there out of the upstairs closets.

From my perspective, our living room feels like a place of chaos. And yet, it’s a strange ordered chaos in which items are grouped or lined up neatly. Pillows are straightened on couches. Mom seems to be able to achieve some level of micro order while the macro eludes her. I cannot help but wonder at what particular brain circuitry brings us this kind of organized chaos.


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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.