Not quite the plan

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


More than memory.

Mom brought up her husband, my dad today.  She rarely talks about him these days.  I asked her how often she thinks about him. Her answer — all the time.

Dad died about two and a half years ago now. For most of the first year after his death, we had to talk repeatedly about the fact that he had died. It was horribly painful conversation for both of us as I had to walk her through the whole experience to trigger the memories. And for her, it was learning anew in each conversation that he had died and having to face that pain. It was quite simply awful.

I did eventually learn which pieces of the story helped her piece together the memories. And at some point she came to know and accept that her husband of forty plus years was gone.

After that, we talked about him rarely. Sometimes we look at family photos and talk about him. But it is rarely because Mom initiates it. So it was a surprise when she brought him up herself.

These days, Mom’s grasp on reality is tenuous at best. She barely remembers things that happened moments ago, and much of the past is a blur also. Yet, she still remembers her husband and misses him — all the time. It is fascinating to realize how deeply we hold certain feelings and connections.



Paying attention.

Another caregiver commented the other day that my blog focuses heavily on the positive side of this whole dementia caregiving journey.  Caregivers know that we have it tough– far tougher than most of our friends and other family realize.  So she is right to ask about this.

Most the of the reality of taking care of Mom at this point in life is just sad.  Especially having already lost my dad, I don’t want to be losing Mom to dementia before she sees me marry or have children.  And seeing anyone you love fade away is painful.

Besides the sense of losing Mom, I am all too aware of what I have given up to be here for her now– travel, time with friends, the ability to have a normal dating life and hope of finding a good relationship, alone time.  I really miss alone time.   Then there’s the worry of the finances of paying for Mom’s care through the end.  The question of how long this whole journey will last.   And I find myself wondering often, what will remain of me and my life on the other side?

So I write this blog to force myself to look beyond these ongoing stresses.  To pay closer attention.

Upon reflection, there is humor, love and good kinds of life learning to be found in so many of the corners of this experience.  Sometimes it’s easy to spot.  Taking Mom to the ocean and seeing her light up at putting her feet in the waves.  Joking around about my heavy wine drinking habit.  Feeling the purpose that comes in caring for someone.  And sometimes it takes more work to sift through all the emotions and find the parts that keep me hopeful or make me appreciate this time with her.  But the practice of writing this blog pushes me to do that.  It is my space to pay attention to what is here now.

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What we gained in the fire.

This is the name of one of my favorite songs, a song that I listened to countless times in the weeks after my father’s death.  For me, it captures the nature of grief and our struggle with mortality, a moment that I find myself in again tonight.  I sit here listening tonight to the Mynabirds:

“And I got something I don’t wanna lose.
But I’m learning to let go of you.”

My best friend- also in her mid-30s- lost her mother this week.  It makes me so sad for her, for me, for all of us who lose our parents much too early.  In the story of how life is supposed to go, our kids are supposed to grow up with grandparents.  Our parents are supposed to be there for advice, future Christmases, shared humor and memories, and simply love, for many years to come.

I wander down the hall to check on Mom, who uncharacteristically headed to bed early tonight.  I could not of course simply appreciate this but have decided to worry that this means there is something wrong with her.  She is fine.  Within a moment of me poking my head into her bedroom, Mom and I are laughing about a stupid joke.   Loss reminds me to be grateful for our middle of the night laughter.


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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.