If this happens to you

Since this happened to my great grandmother, her son and his daughter (my mom) , it could very well be happening to me and god forbid, then happen to you.

My great grandmother Nellie was a nice lady. And man could she cook! Her afternoon roast suppers were a thing to behold. Home made sweet dinner rolls brushed with butter, cooked fresh from the garden green beans, roast beef so tender you didn’t need to chew and a rich, savory, dark beef gravy that sounded like Barry White serenading you as it was poured over mashed potatoes.

Something began to happen to her the forgetfulness and the falling while she was living in the house on the river alone. Grace would find her. Then her cooking was done for. She was burning everything. They decided to move her out of her home and into ours so we could look after her.

She had no idea why and often tried to leave on her own to get back to hers. Though she had no mode of transportation she packed a bag and tried to walk there. (16 hour drive back to hers, imagine walking) Her mind was highly suggestible to the will of others which explained how her sister convinced her to leave everything she owned to her, and the ministry of televangelists.

She lost continence, often. And your Aunt and I were left to clean up after it. She was a big woman (like my mother) and bathing her was hard for two teen aged girls with no experience helping the elderly in and out of a tub.

After a bit it got too much and we had to send her off to a nursing home facility. She eventually died there and for the life of me I cannot recall the exact reason because the doctors only gave a non-specific notation on the death certificate.

Fast forward to her son, my grandfather began his journey with essential tremors, and the memory lapses with some issues speaking to be understood, and then the falling began in which he broke his hip and they put him in a nursing home to recover but he did not last long, he lost the ability to swallow and then died shortly thereafter.

Before all of this he was a great gardener. He was a great cook like his mother. In fact he had a hand in teaching me to cook. He was a builder and a general handyman and mechanic. There is nothing he could not fix. He made miniature furniture as a hobby. So losing him to this disease is heartbreaking. He was not a man of many words, but when he did speak he made it count.

My mother started with hallucinations, dizziness, constipation, issues with memory and the essential tremors, dehydration and then the falls. While I was there in that summer to help organize her house for a transition to the nursing home, she suspected she was having incontinence issues and she had the pain in her groin like I am having now and they gave her exercises to try to stretch out the muscle that was giving her trouble. Turned out she had a bad UTI that caused sepsis. I will never forgive her doctors for not checking that out.

When she was transitioned into the nursing home her ability to complete a thought went right out the window and she became non verbal shortly after. She went like her father with the inability to swallow and ultimately died.

Now, I have minor memory issues, but I am having some numbness/ neuropathy which is so fucking random that each day is like a roulette wheel of which area of my body is going to be the trouble spot. So far no essential tremors.

Thank christ.

But my muscles are randomly seizing while I sleep which gives me the pain I often complain about and I have the dizzy spells my mom had, though I have not fallen. I have come close but I have caught myself.

I am often severely dehydrated and the dry mouth and eyes are something which make me nervous to think that I have Sjongren’s syndrome. With the pain in my groin, I worry that I have a UTI but the doctors tell me it is not. With that is a bit of urinary incontinence.

The thing I have that I do not recall my great grandmother, grandfather or my mother having was being able to poop logs long as tree branches daily to the point where there is an urgency to release it several times per day.

So the reason I am telling you this is to keep track of the progression. This is a generational thing. And I am so sorry if I pass it onto you. I had no idea this was a thing. After three people getting it I can only guess that I am carrying it and I may have passed it onto you.

What I can say you have 30 to 50 good years ahead before it is something that could arise. Live it to the fucking fullest. Do everything you’ve ever wanted to do. Don’t think later will be better. It may not. Do everything while you are able.