Uncle Lewy

Living out loud with Lewy Body Dementia

So Much to Consider

I visited 2 smaller care homes Monday in Marin

Honestly, they made me sick to my stomach, my head hurt too when I got home

This is such a hard decision

The consultants thought he might need a smaller ratio of staff to residents, so they suggested I look at these 2 places

The first place we went to, all the residents were outside patio under a shaded cover

All of them were in wheelchairs

A nice young nurse was trying to lead them in chair exercises–but no one at all was following along

Most of the residents were there……so I got a reql quick sense as to the community

Athestically it was a bit rough as well

The outdoor space was ok, there were 3 small one story homes that were part of this “village” and the back yards were open to each other

But nothing like what he has here at our current home

The second place was a single home, nice back yard, located on a culdesac in Terra Linda near what looked like a trail head

Tons of clutter, music playing in the back ground, 3 people in hospice care at the end of their life, one resident who was over 100 years old making audible grunting noises outside on the patio

The nice woman who runs the place had papers and files in several locations in the living area–Matt would be taking to those and moving them, hiding them…..

I just don’t think either of these places are right for Matt, incredibly off the mark

He’s still quite amblitory…..it would be so very depressing for him to be placed in that environment, so depressing

It gave rise to a huge thing to think about: we are considering moving him to a place, partially, because of his risk of falling

So is it better for him to be in a bubble that over compensates for his fall risk or would he have better quality of life living in a way that isn’t so much of a bubble?

For example, lets say 60 days, 2 months, we put him in a bubble, his freedom, independence is sequestered severely and he doesn’t fall because someone is hovering around him 24/7

He’d absolutely hate that, hate it (I think)

Or he has 60 days of more indepence, isn’t sequestered in a bubble, and he falls on day 60

Which is better? He has 60 days of freedom, independence and falls

Or he has 60 days being in a place that he has lost all freedoms and doesn’t fall where he has a much lower quality of life?

We know no matter where he goes his chance of falling is still there–no one can really be with him every single minute of the day

So how tight do we made his safety blanket? fear making it too tight just rips the quality of life away from him

How can his quality of life in a place where everyone else is wheelchair bound, at the end of their life when he isn’t there yet be better than being at home when he is moving around quite easily

He will be one day, for sure, absent some other unpredictable thing occurring, but he is not there now

So that has me thinking about what can be done to keep him home longer–that was my original thinking, my original plan

I am still enamored by Enso Village to be sure….those residents were so much closer to where Matt is

What are the things that we don’t have in place here at our house that might help?

Kirsten of Hired Hands encouraged me to connect with an organization called the Hummingbird Project

The 8 x 11 piece of paper they came with to try to engage Matt in activities didn’t yield any good results, but maybe the team at this other organization has a different approach

What I’d love, absolutely love, is for there to be a guy pal that can take Matt to Sonoma Springs on, say, Tuesday night

Any week night…..just a guy who likes to drink beer like Matt does…..who would want a companion

I think that would be something he’d like too…….

He used to have pals at the dog park, but when Lucky passed and we moved, that fizzled

In VA he had Mark, our next door neighbor, who they’d always end up on the back of Mark’s porch having a happy hour

At this point, its more then just going to the neighbors for a happy hour, its being with someone who can be responsible for him getting home, navigating well

What about hiring someone to live here full time? Not the lower level Joey type person like we experiemented and failed twice with, but a more qualified person? We still have upstairs we can make available to them

I don’t know, call me crazy……this journey to find answers isn’t a straight line, there are so many possible pivots, forks in the road

Seeing the forks, saying no to places isn’t going backwards, it is going forwards, but it doesn’t necessarily feel that way

<–Back to Uncle Lewy

2 responses to “So Much to Consider”

  1. wondrous268336d70c Avatar
    wondrous268336d70c

    A live-in caretaker would be a great next step. It would keep him with you but relieve you of the fear of handling his progressively more difficult symptoms alone. Huge hugs sent to you for this time. I love you, sis!

    Liked by 1 person

  2. Hey doll, your checking out and seeing the whole range of options, from those that sink your heart to those that bring hope and relief, is part of the journey, yes for sure. You are indeed moving forward, and on the right track I feel, studying the variety of options in our area and feeling how you and Matt respond, and considering the other scenario of what if Matt stays at home, what would that look like with increased care and oversight. As his falls are getting so much more frequent and scary, you are right to recognize it’s time that Matt’s well-being means more eyes on him. You are doing a great job investigating how to get there. Enso sounds terrific and so does him staying home if the conditions are right. You cannot be by his side 24/7 without trading in everything else you have needed to do with your time, including keep yourself cared for so you can be there, present and healthy for both of your lives. Love you mermaid.

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