Uncle Lewy

Living out loud with Lewy Body Dementia

Calm Between

The last week or so have been pretty low key, nothing much going on

Matt is sleeping late, the weather is discouraging us from attempting to get out and hike or really do much

He continues to do strange things that indicate he is trying to control his environment, move this to there, so on and so forth (as Walter used to say)

He hallucinates, mostly things in his hands that he needs to throw out

I have been reading a lot, hiding in the sunroom

We have a big trip coming up at the end of May to see my mom for her 88th birthday

Between that and me managing medical related appointments for both Matt and me, yes, I am taking care of self in the midst of all this

I am getting things done but feel like life is running at half speed or less

I guess that is a good thing, not entirely sure

I have about 30 minutes until Matt needs to leave to go to boxing, so maybe that will amp up the energy level in this house a bit

The trip to see mom for her birthday will be the first trip Matt has taken by air in a full year

Luckily we can take a direct flight and the places we will be staying he has familiarity with

But I anticipate it will be a challenge, it won’t be easy

Its important though, as I am unsure if there will be another chance for Mom and Matt to see each other again–that realization is poignant

Traveling is hard on both of them these days

Its funny, in a “ha” way, not a “ha ha” way, I have to inform those in our professional support team that we will be gone

They inevitably say “enjoy your vacation”

I want to reply to say this isn’t a vacation for me at all, its going to be hard, I will be exhausted, at the edge of my patience supply, after we return

It does make me think about what a vacation might really feel like, a real one where you go specifically to vacate

Time to dress Matt for boxing, then determine what I am going to do with my hour till I need to pick him up again…..

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4 responses to “Calm Between”

  1. mentalitysensationallyfc14c86ab9 Avatar
    mentalitysensationallyfc14c86ab9

    You mentioned that it’s important for Matt and your mom to see each other again, likely for the last time. I really wonder if it is worth your sanity and Matt’s limited ability to interact and even understand what is going on. Do you really think it’s necessary to take him with you?

    Please know that I never want to be someone who says “you know what you should do…“ It’s only you that knows what is best to do. I ask the question as your friend.

    xo Cathy

    Cathy Stierhoff clstierhoff@gmail.com clstierhoff@gmail.com 415-331-5578

    Liked by 1 person

    1. Cathy, I so appreciate your comment. He wants to go. I denied him 2 times atleast last year. The litmus test is, for me, the struggle, hardship will be short lived. The value to all of us all being together, making memories, will be permanent. I fear living with regret of not having taken him will be worse than the short term struggles. With the sun shining today, my energy stores seem revived!

      Liked by 1 person

      1. mentalitysensationallyfc14c86ab9 Avatar
        mentalitysensationallyfc14c86ab9

        Thank you for your thoughtful response, CJ. Now I truly see that it WILL be worth the effort to take Matt with you. As always, I bow to your energy and wisdom. Love you, girlfriend. Xoxoxox Cathy

        Cathy Stierhoff clstierhoff@gmail.com clstierhoff@gmail.com 415-331-5578

        Liked by 1 person

  2. I’ve been worried about the same thing. I’m glad it’s something he wants to do. I’m looking forward to spending some more time with ya’ll next month.

    Liked by 1 person

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