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.

The Power of a Break

Maybe I should have known this, maybe I did, but the truth is more real now to me

Everyone said “you need to give yourself a break”, get some regular help, take care of yourself

Yes, I agree, the how, when, who, the what all needed to get sorted out

Yesterday’s paddle drove the truth home, lit up the scene

After returning home from paddling, I felt more present to be “more there” for Matt

Things are changing, things are fluctuating

Little normal living things are harder for him now, not that he can define hard, hard can only be defined by someone watching him struggle with a normal thing

Yesterday, it was the order of putting clothes on

You and I know underwear goes on first, then pants then shoes

Socks can be put on anywhere in the plan, they are definitely more of a free bird, but definitely must be on before shoes

This ordering wasn’t something easy for him yesterday

Because I had nourished my soul, my store of love and patience was full, so I could spend the time with out feeling rushed or frustrated, patiently, helping see the way to get himself put together

He was grateful to not be going commando after we were finished with his dressing

Day in day out, that well of patience and love gets used, depleted

The more I can be in that loving patient space, the better for him

He is able to read my energy, still

If I am anxious he senses that, if I an frustrated, he feels that

It can definitely lead to a downward spiral, not taking us to a better place

So while there is guilt for taking care of me, taking time away, nourishing my soul, I see now how absolutely essential it is

Digging for analogies, in delivering first aid, they always say make sure you are safe before rendering aid to another person

In aircraft, put your mask on first before helping others with theirs

If you aren’t safe, the risk of collective harm goes up

In my case, this is emotional safety, mental strength, strength of patience, understanding, refilling my love cup

If my well is dry, if I feel under nourished, emotionally dehydrated, physically tired, how can I be my best self and help him?

So it became more clear yesterday, when I was helping him slowly undress to redress, how true these words are to get a break

We are abundantly blessed by Courtney being here with us, by family creating time to be with him

I was abundantly blessed by being able to drop into a group, already formed, that provided on the water activity and solid healthy social interaction

I am both a water bug and a social being

It’s not easy, it can be confusing to know what to do in akward moments, even when I am with him so much, it’s still confusing, still generates the question “what do I do now?” “why do I need to do this over and over?”

I was my better self yesterday, after taking care of myself, nourishing my mermaid and social being

It feels so hard to describe…..but seems clearer now, true


2 responses to “The Power of a Break”

  1. Thats wonderful Cj. It seems selfish, but no, filling your tank like that does help both of you. So much to navigate. I’m proud of you Cj. Love to you both and.. Sheba and Courtney! 🥰

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  2. There is nothing wrong with taking time to refill your tank and separating yourself for s brief period of time. It can help calm your inner turmoil and restore inner peace.

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