I hope you had as much fun reading the SIPS BOR as I had creating it

It genuinely brought amazing levity to my days as that was rolling out and allowed me many moments of rising above all that we deal with daily as we live with Uncle Lewy

After the VA trip, Matt was a bit more wonky for about 2 weeks, as was advised might happen by the research done before the trip

He’s been sleeping quite a bit since returning, even now, especially during days the caregivers are here

The caregiving team tried to engage him in some activities as it seemed he was finding little purpose to his days

They tried what they typically do with others with dementia, they had a whole page of suggestions, 2 columns worth, but didn’t report much success

So we continue to try to find ways to engage him with his world that represents some meaningfulness somehow

I think he knows his world is harder for him to navigate, that what was once easy is now hard, I think that continues to depress him

Its not easy, its probably why the day clubs didn’t resonate with him

I know the one thing he truly values time with family, he really does

Leah came Saturday to hang with him, she lives much closer now and we are so happy about that!

They went to lunch, Karl hung out with Sheba, and they watched the World Cup

I hear that they all took a big afternoon nap in front of the TV too!

Its all good, they were together, I know Matt enjoyed his day with her

Beyond that, we are still dealing with incontinence from time to time, its part of the journey they say

We probably had one of the worst moments Sunday

I’ll spare the details and only say this: when a baby goes through the diaper stage, parents certainly have to deal with blow outs but I would imagine those blow outs are generally contained to the bed or a small area

When an adult with dementia has a blow out, unfortunately, before you realize it, they try to clean it up themselves, but they don’t exactly know how because Uncle Lewy is screwing with their ability to figure out how to do things

So it can be a way bigger thing to have a Uncle Lewy inspired blow out to clean up, involving multiple rooms, carpets, you name it, and that is what Sunday morning was all about

We got through it but I get the sense that Matt felt really bad about it

I did the best I could to reassure him it was ok, that I loved him, but still, I think he knew how much work I had to do to clean up the scene

Today we go down to Marin, we’ll see Elliott at his yogurt shop Mags in Larkspur and Matt will hang out with Susan in the afternoon while I help EB, Mary’s daughter, move apartments in SF

He will be with family today, these are the kind of days I know he loves the most

Knowing that this is exactly why we moved back and knowing that Matt is spending time with family makes the hard parts of this journey a little easier to bare

As loved as he is, by so many, it doesn’t make Uncle Lewy and his mischief go away, unfortunately

Its absolutely unthinkable to me how anyone would go through this without the amazing village we have, full of family and friends, for Matt

Part of the village value is to lift me up, support me, so that I can return home with a loving mind set to continue to gently love him the best way I know how, the best way I can

My outrigger group, Ohana Wa’a, is really elevating my spirits at least twice a week now

I get water time, which feeds my soul, I get socialization time, which lets me forget the details of my days with Uncle Lewy for a couple of hours, and I get a really good work out too

I think about this often, now that we have a caregiving team and rhythm established, how easy it is to become beaten down when you are the caregiving spouse

Its the whole frog in the pot thing, the frog doesn’t sense how hot its gotten till its too late

That can be the situation with a spouse caregiver, so easily, and I see this manifested in a support group I am part of

Fortunately, with the help of the professional caregiving team, family and friends, I feel like I am no longer that frog in the pot

I was able to jump out before it got too hot

And for that, I am grateful

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