Monday, December 19, 2022

I’m Still Standing


I’m toast. It’s late in the day as I draft this. The thought of reviewing my year kind of makes me want to vomit. If I had written when I got up, it would be a different post. I’m dog tired at night but I’m going to write anyway.

I started this blog twelve years ago. Life was different then, nothing like it is now. There was so much great life in between. I am grateful I have documentation of those times. His illness has paralyzed me.

My husband has Stage 6 Alzheimer’s and vascular dementia. Life has gotten weird, super sad, and tiring. By day’s end, I start to feel really sorry for myself. I don’t start the day that way. I get up early so I have an hour to myself and hit the day running on good energy but the disease is sucking the life out of both of us. Dementia takes no prisoners.

I should have blogged this year but I didn’t. I have felt paralyzed. What little creativity I had is buried under sad thoughts and exhaustion. But I’m going to try to get something down here because I need to. I need to document this life. The good, the bad, the ugly. Someone reminded me recently that this too shall pass … that thought is a double-edged sword. 

This time of year I try to think of a theme word I can latch onto. I searched my previous posts and found theme words I have tried to live by:

2013 Develop | 2014 Move | 2015 Create | 2016 Improve | 2017 Reveal | 2018 Resist | 2019 Embrace | 2020 Relax | 2021Ask | 2022 Pause | 2023 Thrive

2022 is a blur. I’ll get to the good stuff but first I want to tell you the signs of caregiver stress:  Feeling overwhelmed and constantly worried. Feeling tired often. Getting too much sleep or not enough sleep. Gaining or losing weight. Becoming easily irritated or angry. Losing interest in activities you use to enjoy. Feeling sad. Having frequent headaches, bodily pain, or physical problems. I have experienced all of these signs at one time or another this last year. I have cried a river of tears and every waking moment is spent thinking about this horrid disease. But I’m still standing!


The best thing we did this year was take our last summer road trip to eastern Washington. We spent 8 weeks at a beautiful AirBnb in Kennewick. While there, we had many visits from friends and family. Definitely time & money well spent. We had tacos every Thursday for our Tricities friends, and Gene’s daughter and granddaughter traveled over on two occasions from Portland to stay a few days. My high school bestie flew from Juneau to visit for a whole week. Another bestie flew over from Portland for a couple days. I loved every minute of it. If any of you wonderful people are reading this, you will never know how much it meant to me that you showed up.  The hubs and I both got a light case of covid the end of July, and the thyroid surgery I had scheduled at OHSU in Portland was canceled. With the blessing of my doctor, I have decided to put surgery off for now. The logistics are too complicated. The hubs suffered terrible anxiety during the trip and I knew it would be our last. My step-daughter was especially grateful we had the beautiful space in Kennewick to make our last good memories together and I’ll forever remember them sitting outside just enjoying the beautiful view. It was truly awesome.

When we returned to Arizona, at the urging of family and friends, I hired a home health care agency to bring respite in so I can get out and run errands and escape this nightmare for a couple of hours twice a week. The agency sent a perfect angel to sit and watch movies with Gene. She makes snacks for him and sometimes they sit outdoors and bird-watch.

My goal for 2023 is to survive and thrive. It’s a tall order in the midst of this but I refuse to allow dementia to take us both down. Caregiving is the hardest job I’ve ever had. I am finding out what I’m made of. 

Raising my coffee cup to everyone who is still standing. I’ll be back soon.

Love, susan 💜

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