Reading through the information has been quite interesting, and yet confusing. It seems as though there are so many overlaps between the different forms of dementia, that it seems nearly impossible to tell one from the other. Yet, in the earlier blogs there are distinctions that help the lay person begin to separate them from each other.
Knowing that it takes up to nearly 18 months to actually pin a diagnosis of LBD for someone doesn't help, but it made me wonder how the people in Tukwila were able to nail it for Mom so quickly (she was there a week). With the medical records, observations, input from both myself, earlier doctors (in their reports), and having her observed in a geri-psych ward with specific tests, this was made much easier, and the diagnosis was an ongoing procedure, although we truly weren't aware (thank goodness for doctors being aware and taking accurate notes!).
Mom's generation, as I've been told, has a tendency to keep problems of dementia under wraps. Mom was adamant that no one (especially doctors) know about our grandmother's diagnosis of Alzheimers. I let it slip with one doctor, and then again with another - Mom found out about the first slip and let me have it! I do sense she was afraid it was genetic and anything that could be thought out of the ordinary for her would be assumed to toss her into that category. This I understand.
During my research and reading, I happened upon a website entitled Lewy Body Journal: Our Families Experience with Lewy Body Disease. This is a site written by a family whose mother was afflicted. It takes you through the stages and their trials and observations of her downturn. There are sections that are a little difficult to get through - emotionally. There are parts that reflect many of the symptoms of Mom, as well.
I had been thinking about Mom's Balance. I believe in an earlier post I talked about Mom and her Captain Klutz behavior. She had fallen a few times. Once she fell (on the ice) on the way out to the mailbox, and this did some very painful damage to her hip. I bought her YakTrax to help her on slippery surfaces. She never used them. After 3 years, they were still in their package in a closet. She had another pair, as well, which she never used.
These are YakTrax on the bottom of some boots - Not Mom's. Just an image I found to illustrate.
She also fell while walking around the neighborhood. She cut her face up, and there were scrapes on her hands, arms and legs. I really thought nothing of this, except she needed to be more aware of her surroundings (Capt Klutz returns?).
Then, in July of 2012, she phoned me. She was very worried. She had gone for a short walk, and before she was able to make it to the end of the block (she lived mid-block) in the alley, she tensed up, couldn't catch her breath, and felt quite dizzy. I told her to call the ambulance, but she declined and told me she was going to take a nap and see how she felt (I wasn't sure if this was going to be her last call with me or not - but I had planned on going up in the next few days). She phoned later and told me she was fine.
I drove up to see her later that week and she said she hadn't had another incident. I still phoned her doctor and the nurse asked if she'd had another instance. I told her she hadn't, and she said there was then no reason to see her at this time. I wasn't happy. I told her we would then go to the ER. She asked why. I remarked that since she couldn't figure out that there was something odd that had happened with Mom, and didn't seem at all interested in helping us figure it out we'd just go it ourselves. She made some snappy comment and I let her have it with both barrels. A normal person on the other side of the line would probably have figured out that there was a problem and had made the appointment. Her remark? "I'm not understanding why you would go to the ER for something that happened only once." I slammed down the phone. I did call back and got the doctor. She understood what was happening, and I explained my poor behavior, and apologized, but cautioned her about zombie nurse who hadn't a lick of empathy or common sense.
Beautiful Port Angeles Below the Olympic Mountains
We went to the ER, they ran brain scans, and told me there was nothing wrong with Mom - I wanted all the tests for the heart, breathing, brain, etc. I was told she was quite fit for an 82 year old, and she didn't show any signs of cognitive damage or decline that wasn't normal. I was now very confused. Was this something leading us to her death?
My brother and his wife sailed into town from their vacation (yes, they were actually sailing) and my nephew came in, as well. WE had a chat with Mom about moving down to Portland. She was non-plused. She didn't seem very interested in what we had to say in our intervention.
a sailboat in the Straits of Juan De Fuca between Vancouver Island, BC and Port Angeles, WA
The next day, she made no mention of the family conference, and we had a pleasant morning and a good lunch. On the way home I asked my brother if he thought it odd she made no mention of the previous day. He agreed.
That afternoon I phoned Mom to let her know I was home safely, and I asked her about the meeting. She flew into a rage. She wasn't happy about it and didn't like that we would dare to question her or try to force her to move. I was content that she seemed to have her faculties intact.
Later, this would lead to more confusion in her driving, her days, and other incidents that I've either mentioned before or will allude to later, which eventually led to her diagnosis.
To be honest, Lewy Body is a disease that you don't necessarily look for, and normal things that you figure just happen become key aspects, in retrospect, of diagnosis and symptoms.
If anyone reading this has any other resource they'd care to share, I would truly appreciate it!
Until next time!
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