The first day of the rest of my life

I dream of houses. Wandering around an old one, moving into a new one. When I dream about an actual building I have spent time in, I know it as that building but it different from real life. Like in high school, the layout of the buildings is the same but the appearance is different.

For years, I dreamed of an old Victorian house I loved roaming around in. It was neglected and dusty and dark and there were a couple of aunts living in the basement. I was the only one going upstairs. About a week after I got married, I dreamed about the house again only this time it was bright, refreshed, clean and bright. That’s when I realized the house was a dream metaphor for my life.

I have had a couple of dreams recently about the house I grew up in. I could be alone there and not feel lonely. I could retreat from the world into books.

Last night I dreamed I was part of a big family and we moved into a new house. It came furnished and didn’t look like much from the front. Inside it was at least 4 stories high, overfilled with furniture that was dark and heavy. But there were large windows opening on to a large open garden space. The view was great, once you removed the heavy curtains and heavy wooden furniture. As we wandered the rooms, I could see the basic structure and it was good and looking forward to clearing it out and enjoying the open space.

I move Brian into memory care today. My life is going to change drastically again. Time to clear out the house and get some light in.

Here we go.

Late summer is taking another lap around the track, it’s 9:15 and still 75 degrees. Supposedly, a cold front comes in tomorrow and makes it rainy and uncomfortably cool. Soup weather then.

I haven’t -posted much here about his dementia journey but my husband is in the late middle stages or early late stages, who ever chart or definition you use.

Today, he went for a hearing test, they determined he has some higher frequency hearing loss, not surprising. The hearing aids will be in the neighborhood of $5000 dollars. I don’t know if that’s going to help him enough to justify the cost. He gets to try them for a 30 day money back (sort of) guarantee. Insurance doesn’t pay for anything except part of the exam fee.

I am at the point of researching memory care facilities. There are a couple of them close by and the price is mid range for private pay which we will be. Medicare won’t pay unless he is discharged from a hospital for rehab needs and then only for 90 days. We don’t qualify for Medicaid because I inherited too much money from my dad which was supposed to be for our retirement. Yep, that kinda blows. The American health care system is broken.

I felt good yesterday evening like I had accomplished a lot in getting the ball rolling. Today, I felt like there’s a lot on my back. I have a friend going with me tomorrow for moral support and because her mom went through this journey. Right now, I’m feeling really heavy.

Teeny spark though, I’m thinking how the remains of a former camping trailer can be repurposed to travel in.

Break the Routine

Yesterday we decided to do something different and get out of the house. So we drove over to a park on a local lake and sat and watched the water and a few boats. I found a bait box with a sticker on it I wanted so I picked up the box and kept it. A little later we saw an eagle try for and miss a fish and fly off. That was when I knew I had to do a journal page with the sticker. Here it is.

The House Where Time Stands Still

The house where time stands still

I unlock the door and enter,
There’s no one to call to,
No one living here now,
Just the brief scent of powder
I smell as I walk through the door.
The light barely changes from season to season.
Nothing moves but dust.
The same horse moves around the pasture
I can see behind the house.
The bees come and go.
Only memories live here now.
Dinners cooked, dinners shared.
Holidays, birthdays.
Conversations deep into the night,
Deeper memories shared, history retold.
They’re all ghosts now.
I delve into the past when I visit,
Bringing life and movement when I enter.
I pull out the memories and mementos,
And relearn who these people were.
Find that connection again
Until it’s time to put everything away
And return to my life.
I lock the door and drive away,
And time stops again
In the house
Where time stands still

Lost and found

What have I lost and found this year? Right now the losses seem much bigger than what I have found. I have lost the future we had planned. I have lost my faith in humanity. I have lost my belief that Americans will do the right thing. I have lost my pride in being a Texan. I have begun losing my husband. I have lost time spent alone.

My biggest personal loss stems from the fact my husband lost his job last spring because he couldn’t remember how to do his job. After numerous tests, 6 months later we got the diagnosis of Early Onset Alzheimer’s. Surprisingly, it doesn’t put us in a financial bind…yet. We had planned to keep working until I qualify for Medicare and then get a motor home and travel. We got the motor home two years ago. As long as it doesn’t become a financial burden and I feel he can still keep making new memories, we will keep it. I just wish I could afford to take 2-3 months off from work now to see some of the things we wanted to see.

What I have found are some small things and maybe not so small. I have found confidence in driving the motor home, and I feel I drive it better than he did. I will be driving it solo for two days next week to meet him and friends in Big Bend. I drove it for 1400+ miles while on vacation to New Mexico this fall. He’s not allowed to drive anymore. While in New Mexico, I found I remember how to drive a stick shift, we borrowed the camp Jeep while there to do a little sight seeing in. I also found I am pretty good at driving off-road. I will be doing some of that next week too, I’ll be towing our Jeep.
I have also found the deepening friendship of three women I have mostly weekly Zoom meetings with. We talk about art and projects we are working on and just connect. I always feel better after talking to them. One of them has a home in Terlingua and I will see her next week.

I don’t know yet how this year is going to balance out, it may take some time to find out. The next few years probably aren’t going to be great as I lose my husband to Alzheimer’s, the early onset version moves faster. I have seen him fail noticeably the last 9 months. He is now on a drug that slows the progression of the disease and it seems to be helping. It can’t be stopped though. I don’t know how long before I have to quit my job and stay home with him. I will take it one day at a time and deal with what I have in front of me right now. I am probably not planning ahead as much as I should but sometimes I just can’t.

I have hope that in some ways next year will be better. At least there is a vaccine for COVID-19 and we will get it and can stop worrying so much about one thing. And we have a new president coming in who I hope will start to bring us back together again as a nation.

Time will tell.