When Dementia Comes and Goes

Uneven dementia is so sweet and sour.  To be aware enough to know your mind isn’t working the way you want is even more torturous when it gets to the point where someone else has to start speaking for you, especially if that someone is a child you raised. 

The times of day when Mom has that self-conscious awareness are so dear to me, because it’s fully HER at those moments, knowing herself, knowing me, and knowing things are royally screwed up.

And then there are all the emotions that go along with it, for both of us.  And both of us wondering why the heck we decided to put her in a place with Alzheimer’s-centered peers and staff who aren’t quite compatible with her unique condition. 

She had been pretty content in our home- as content as you can be living in a house that feels like someone else’s- but she, and we, didn’t know how to handle her terrifying episodes at night, when her brain levels of dopamine drop and she gets extremely agitated, paranoid, and sometimes aggressive.  No one was getting more than 5 hours of sleep, and it came in chunks.  I still wonder every day if I made the right decision.  I desperately want to share the last stage of my mom’s life, and I want her to feel as normal and as comfortable as possible, which is not at all the case during the day at the memory care facility.

Most residences that deal with dementia focus on Alzheimer’s, since it’s so much more prevalent.  The place where my mom, Carol Jean, just ended up doesn’t quite get that she’s a different apple as far as the way her brain is affected.  They think she’s a great conversationalist because she hasn’t progressed too far dementia-wise, but tests indicate severe dementia at this point, masked by her uneven and unusually high language skills that are still intact.  From what I’m learning, this can be typical of Parksinson’s dementia.

“Brain function in Parkinson’s disease differs from that seen in Alzheimer’s disease.  In PD, attention, memory and learning, executive functions, and visuospatial functions are the areas usually affected.  Language, thinking, and reasoning typically remain intact.”   

-from Parkinson’s Disease and the Family, by Nutan Sharma and Elaine Richman

I miss having Mom around to help me shuck corn, entertain the cats, keep track of the birds in the neighborhood, watch my flowers grow, alert me about every weed, and tell me how terrible my hair looks.  I miss it most because she feels useful that way, and she IS!  (Except for the hair advice.)

The bed is okay, but Mouse and Oscar miss Carol Jean's lap, which was always warm and waiting

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2 Responses to When Dementia Comes and Goes

  1. Barbie says:

    Megan, this post is so sweet. And so sad. I just found your blog today, searching online for help and support for caregivers… My mother has Parkinsonism and is having times of confusion almost daily now; so I can painfully relate to your sentiments. It is so heart-breaking. I don’t think anyone who has not experienced this can understand this pain. I miss my mom too. I miss being able to tell her about a new nail product for our crappy nails that seems to be working (She can’t listen that long.). I miss the personality she used to have. I miss _having_ a mom (not being one). I too cherish the “clear” times we have together, when she is herself…. I cannot wait to read the rest of your posts… I wish we lived in the same neighborhood so we could meet for coffee and laugh and cry together,.

    • Megan says:

      Hi Barbie,

      Thanks for reading, sharing and saying hello. Sounds like you’re in a different part of the country. (or world?)

      Do you know about Lewy Body Dementia? I’m not sure how important it is to you and your mom to get a definite diagnosis, but it seems that the Parkinson’s community is just starting to learn about this, and it’s especially relevant when PD symptoms affect cognition dramatically.

      I know what you mean about the clear times. I try to keep living in the present, to not have expectations, and to meet my mom where she’s at without getting stuck in how she used to be. But we all are human, aren’t we?

      Anyhow, I definitely hear your pain. I haven’t met many people in the blog world who’ve experienced this kind of dementia first hand, so it’s especially nice to “meet” you.

      Take care!
      Megan

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