7/23/25 Wednesday
No weather here today. I have been asked over the last several weeks for an update on my wife, Susan’s, condition. This is not easy for me to talk about for many reasons. Mostly, I suppose typing this all out makes it very real. Hopefully, this will be somewhat cathartic for me.
If you are not aware, my wife has Parkinson’s disease. What makes hers different is that it has progressed at a rate her Neurologist has never encountered in his years of practice.
She was diagnosed just under three years ago, and she started rapidly declining about a year ago. Six months ago, the Doctor said she was already showing signs of moving into Advanced Parkinsons, which begins at stage four. There are five stages of the disease. Stage five is referred to as End Stage.
Over the last three years, she has lost 35 pounds. Although she was never overweight, she currently weighs between 88 and 92 pounds. I take care of her full-time, managing everything around the house, including cooking and cleaning etc.
She can no longer tell time, and she struggles to remember how to use her phone. Not only does she forget, but she also struggles tactilly with the mechanics of it. The same is true of her computer. Reading and writing are significant challenges as well, which is sad because she used to read a minimum of one book per week, and she has always been a “list maker”. She tries to make a list, but we usually cannot read what she wrote.
She cannot dress or undress herself and relies on a walker the majority of the time to limit her risk of falling. I have to help her with her hair. According to her friend, who comes every couple of months to cut her hair, she has lost roughly 30 percent of her hair.
Another thing we experience every day is communication difficulties, a condition called aphasia. In her mind, she knows exactly what she is trying to say or ask, but the words come out incomprehensible. This results in me asking a series of questions to try to figure out what she is trying to convey. This becomes very emotionally challenging and stressful for her; the more stressed she gets, the worse it gets. This usually begins around 10 am every day and worsens as the day progresses.
This has been a considerable challenge for me. This is not something you think about when you get married, but it is exactly what you sign up for, and I am more than happy to do it.
I don’t have kids and have no experience caring for them. Perhaps if I did, I would have been more comfortable when this started. Caring for someone with a neurological disorder, I am guessing, is similar to caring for someone with a brain injury. I recently had to relocate one of my computers to the kitchen for a makeshift office, because it has reached the point where I have to keep an eye on her every move, which I can’t do if I am in my office.
She takes a lot of medication, relative to people without the disease. However, I have experimented with lowering some of the doses with some success. She takes seven pills that are actual Parkinson’s medication, and four pills that are Alzheimer’s/dementia medication. As PD progresses, the symptoms encountered are similar to those of dementia. Some of the meds she takes before bed have side effects and lead to us waking up in the middle of the night. I am an early riser, but when it happens around midnight, it is pretty rough to start my day at that early, doing laundry.
To compound the issues, I have experienced a series of financial setbacks that have put me in a situation I haven’t faced in a long time, further exacerbating the stress. Additionally, the website donations are down 85% year over year. I get it, there are many people struggling out there. Also, we had a mild winter and went right into a drought, which means there is less to post about, and people become less engaged with the weather.
Many people wait until December to donate. This year, if you are able, it would be more helpful to do so now rather than around Christmas.
With gratitude,
JG DWG
I hope you have a good support network around you. If not I’d be more than happy to run errands for you or something alike. Your selfless work should be a rolemodel for many others.
I am so sorry. I was a primary care taker for 30 months. It was the most difficult challenge of my life.
Jeff, I am so sorry this has happened. I did just send some money. However, if you ever need help, let me know. Retired nurse and I help with a 94 year old now.
Maybe just for a break.
Jeff, I’m sorry you and your wife are going through this. This is huge. Besides donations (which I can do some of…), do you have a network of helpers/respite people? Nursing assistants, friends who are helping out? I would be glad to talk with you about that, and see how to get you more help. And I’ll send a donation. Feel free to email or call me.