Riding the Waves of Dementia

The extremes of Mom’s lewy body disease have lent plenty to write about lately, but making the time and space to emotionally process and translate it for others has not been something I’ve done.  Some if it still feels too raw, and sometimes just keeping up with the present in my own mind is plenty of work.

I’ve also been working a lot more (teaching and tutoring), playing with the idea of easing myself back into a regular schedule.  This means I’ve had to let go of some of my caregiving ideals.  So Mom’s teeth don’t get clean enough most of the time, she didn’t yet get the new eyeglasses she needed a while ago, and she’s sorely needing some new clothes to replace the ones that keep mysteriously disappearing, even with her name loudly labeled on the collars and waitbands.

At times letting go and stepping back feels like a healthy progression.  Other times I feel sad and scared about missing a big chunk of her life when I visit less.  It’s like witnessing a very young child grow, but in reverse; people with dementia at certain stages change extremely rapidly in personality and abilities from week to week – even day to day.  I don’t want to miss any of her last steps, words, or jokes.

When I come on the weekends and find Mom in a state of disarray with crusty eyes, food in her hair, drool in her lap, and other yuckiness that seems unnecessary, I feel horrible – I want to give up residential care completely and bring her back home full-time, against the odds that we could ever do so safely or successfully.

One thing’s for sure in Mom’s situation: everything’s constantly changing.  A lot of the time it feels like surfing, never knowing how long you’ll ride along smoothly until a tidal wave comes along, smashing reality and rearranging everything you ever knew.  And if it feels that way for me, I can only imagine how the person with dementia experiences her shifting world.

Between the hard spots, we had a blissful 2 weeks where Mom was lucid, content, and fun in a way I haven’t seen her EVER.  I reveled in it as long as it lasted, with lots of good visits and laughter, and then things changed again, as they tend to.

I got a call the following week that Mom was refusing her meals, her medications (the thyroid and Parkinson’s meds can be a big deal for her functioning), and then got a call 3 days after the fact that she’d “attacked” a caregiver.  That’s saying a lot for a woman in a wheelchair who has no arm strength, so I immediately felt defensive.  When I received more details and heard that she’d bitten a certain staff she’s complained about for months, I wasn’t surprised or sympathetic.

Mom’s always felt threatened by that staff person’s manner of speaking loudly and touching her more roughly, with little patience for Mom’s desires and timeline.  Mom has told this staff person to stay out of her room, that she doesn’t want to work with her.  Instead of accepting that and giving Mom space, the young person argues with her and says her feelings are hurt.  I’ve asked the director to respect my mother’s wishes if she feels uncomfortable with a specific person helping her, which also means no men.  Mom won’t accept male staff doing intimate work with her, but the corporation has been moving their administrative people around, and when staff changes the little details about each resident tends to get lost in the transition.

On the biting day, this woman and her helper were physically trying to put Mom to bed right after dinner (6:30PM), which is convenient for the caregivers, but not okay with my mother, who’s always liked to sit up and watch TV in the evening.  Mom says they wouldn’t listen to her and were trying to haul her off to the bathroom to change into her PJ’s, so she defended herself the only way she could.  I believed her.  The staff did later confirm that they were indeed trying to put Mom to bed after dinner.

People with dementia are still adults with their own priorities!  The director backed me up on this, but it felt like an empty gesture to me.  The staff person is still working there and their routine of starting to put the less able residents to bed immediately after dinner seems to be intact, though Mom is now exempt since she has a persistent advocate.

I realize they have logistics to deal with – many residents with endless needs, especially near sunset.  My struggle is the constant compromise of turning over your family member to strangers who might never be able to give the same quality of attention and care – something I’ll probably never get used to, even though I’m constantly working on letting go of whatever I can.

This entry was posted in advocacy, dementia, lewy body dementia, memory care and residential options, parkinson's and tagged , , . Bookmark the permalink.

2 Responses to Riding the Waves of Dementia

  1. Your observation that dementia causes people to regress like children grow is so apt….we hear this often–and just like the parent who doesn’t want to miss a moment of their child’s first years, we caregivers watch carefully for each change. It simply isn’t as exciting….

  2. Oh Meg…so very hard. I have no words at the moment, just feeling deep sympathy and hoping that you will continue to find a way to get through this the best you can. And for your dear mom.

    With love,


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