Uncle Lewy

Living out loud with Lewy Body Dementia

a very personal journey. Matt, CJ and Sheba….

This started spontaneously, part therapy, part keeping our peeps informed. I am finding my voice, evolving in this. The perspective is very much from my, CJ’s, perspective; the caregiving wife.

subscribe to follow…..comment to join us…..each eye that reads, is appreciated. This is a lonely making disease. Sharing moments is a bit of a sole suave.

What’s next

We have been through a lot in the last year to adjust ourselves to the new reality of Uncle Lewy living with us

I left a job I was really enjoying, found a new place to call home, packed up and drove across the country, settled into the new home, executed a plan to prepare the VA house to go on the market, put the house on the market, got new doctors, etc.

The list of things to do seems endless…..so I often organized things such that they were either a current to do or something for “after the house sells”

Now that the house has sold (thank God!), its time to recalibrate

I could just do what I always do, dive right back into my to do list

Instead, I am taking a breather, a moment to reflect

I remind myself, in this moment, there is only one job I need to do well, only one job no one else is in position to do

To ground myself in that, to honor that thought, to use this moment wisely

I googled “what are the most important things a spouse should do for their spouse who has Lewy Body Dementia”, here is the list:

  • responding with calm empathy to behaviors rather than arguing
  • creating a consistent daily routine to reduce anxiety
  • maintaining eye contact and using simple communication
  • encouraging engagement in favorite activities and safe exercise
  • adjusting the home environment to manage hallucinations
  • securing support for yourself from friends, family and professionals to prevent burnout

I love AI these days! This appeared in seconds after I typed it out

We all know the above list is a great list, there is no need to fact check what was generated here

Terrific reminder for me

Nothing on this list is new here, to some extent, each element above is present in our current reality

There are many improvements, adjustments, tweeks that can be made, 100% for sure

The first 3 items are exactly where they should be on the list if I had to prioritize them myself

Its time to focus on those items, focus on Matt

Having now completed the sale of the house, this huge back drop of a ticking clock that created tension and anxiety for me is now silent

That is huge

I realize that I need to form a new relationship with time……time isn’t the pressure cooker it has been

For so long, I have been tethered to a time clock, professionally and personally

The personal time clock is the need to get things, big things, done so we can be in the place we are in now

Now, time is what I have with Matt

I need to take advantage of time we have

To do that, slowing down, paying attention to him, simplifying, finding joy…these are now the priorities on the to do list

We are blessed, lucky and I am grateful we can do that

I also anticipate that this will become more emotional

So the last listed item, avoiding burnout, will be super huge

I’ve already seen how I respond to that…..burnout, over doing it to get things done…takes me out of the zone that enables the top of the list

Friends, family being involved is not only amazingly helpful, but truly enjoyable, a priceless gift

Soon, we’ll need to add professional help to the weekly routine equation

All in due time……all in due time…..

2 responses to “What’s next”

  1. wondrous268336d70c Avatar
    wondrous268336d70c

    I literally, just sat down to text you and see if you are alright or if you need anything when your post popped up on my computer. I’m glad you have a chance, now, to relax about getting stuff done. Love to you both!

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  2. That is a terrific list you researched CJ, and an inspiring share for sure. It’s so true that when we’re in that feeling of being under the gun, and overloaded, it’s almost impossible to be present as we want to be for our loved one(s) and others overall. I’m so glad you are feeling out of this survival mode in terms of all you’ve been having to accomplish in response of huge life changes. You have my support to continue having the grace for yourself expressed today, and know that progress over perfection is the key thing, lovey.

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