I continue to focus on this utility behavior……yes, you might say I am obsessing over it It truly is the one thing, the pivotable thing, that could make a difference in our home happiness Who can help me with this? Traditional OT/home safety: What can’t he safely do anymore, and how do we compensate? What… Read more

Overwhelm is real Making space for important things is sometimes impossible if life is overwhelming The trip to the care homes and my thinking afterwards yielded a few trains of thought I didn’t really expect One of those trains was the urge to make our current home more appropriate for Matt’s current state I honestly… Read more

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… Read more

So last weekend was rough, no other way to describe it As the week evolved, things got better Cornelia’s intuition kicked in and she drove down from Bend early last week to lay eyes on Matt, to see how he was doing herself I appreciate her intuition, I appreciate all the sage input she shares,… Read more

Nora arrived Monday morning…..I briefed her on the weekend Handed to her the challenge of cleaning him up, including the big clump of dried blood still on his head ”He is yours for the next 8 hours” I put my phone on Do Not Disturb, blocked the world out I went up to my secret… Read more

As I lay in bed this morning, allowing thoughts to freely run around in my head, I couldn’t help but think about the ratio of Matt to Uncle Lewy How much of my Matt am I seeing, living with, how much of the man is driven by Uncle Lewy now? Based on this weekend, there… Read more

We went to Matt’s neurologist Friday for a regular check in appointment I let him know Matt’s been falling a bit more frequently My sense is heat may have been contributing a bit to the falls he had as most of them had been outside Frequency? About once every other week So we tend to… Read more

We had 5 riders, now 6! Matts sister Barbara is joining us! Whoot whoot! We are now 5 weeks out from the ride–September 19th I am really glad to be doing this because I am learning a lot, I have exercise motivation and we are able to as a family channel energy in this positive… Read more

It seems like yesterday that Matt was paranoid about having cameras in the house You know those little small cameras that are super cheap these days that can link together via a simple app on an iphone or ipad I had a few of these cameras in Virginia when we were living there, our use… Read more

I am giving a lot of thought to the home environment Is it too complex for Matt, does it have things that drive anxiety or do these behaviors create a sense of accomplishment for him? Take this rug as an example It runs down the hall from our bedroom to the kitchen He has decided… Read more

These are the super cool peeps of Ohana Wa’a, the group I paddle with on the Napa river during the week Saturday we participated in the Alcatraz Challenge which left from Chrissy Field, went clockwise around Alcatraz and then returned to the beach at Chrissy It was a classic San Francisco summer day Karl the… Read more

Thank you all for your comments, experience shares and support as I really begin to lean into the process of figuring out what’s next Next week I have a consultant who works with families to identify the homes that fit the needs of the loved one needing to be placed We met her in October… Read more

They say that there are 3 main, or top, reasons to consider moving a loved one who has dementia to memory care: This is a generic dementia list What I am discovering is that LBD and “generic” dementia differ in many significant ways The first item is rarely an issue with LBD, wandering What is… Read more

Fleetwood Mac recorded a song called Landslide way back when It came up as background music as I was doing a ride on my Peleton last week This song has been haunting me, a certain section of the lyrics grabbed me and hasn’t let go since then Well, I’ve been afraid of changing “Cause I’ve… Read more

There is no instruction manual, no paint by numbers guide The closest thing I have now to a thinking companion on moment to moment things is Kathy (ChatGPT) I appreciate the comments made on the last post, I am processing those thoughts In the last few days, I really was moving towards the place that… Read more

While its really hard for me to see, because I see him every day I do think we have reached a new level of progression This environmental dependency, this oyster crab brain take over, is pretty consistent during all waking hours now So that means he really is having trouble relating to his environment on… Read more

So the term “environmental dependency” has been bugging me That’s the name of this behavior pattern Matt is demonstrating more and more I am, if I am anything, a very literal person My dad used to say “if I say the grass is blue and the sky is green, it is” Even as a very… Read more

They call it “Environmental Dependency”: In LBD, the cognitive decline and changes in behavior may lead to difficulties in self-initiation and decision-making, making individuals more susceptible to environmental triggers. This can result in behaviors that seem compulsive or involuntary, as patients may respond to their environment in ways that are not typical for them when… Read more

I took Matt out to Lou’s Luncheonette today to get a burger Its a super cute roadside joint, used to be called the Freemont Diner years ago Freemont Diner probably closed during the pandemic, and another restaurant group that has a couple of other cute spots grabbed it, rehabbed it Burgers are fab and it… Read more

The last few days I have been struggling with how much Matt sleeps Most of my thought patterns were around “what must I be doing wrong” Is he sleeping because I am robbing him from quality of life, should I be doing something different, what am I missing? So I stopped that self flagellation for… Read more