Mom, 73, Vascular Dementia Has progressed VERY QUICKLY (from no altered mental status to late stage 6/early stage 7 in 16 months) On my Mom’s ‘bad days’ often when she exerts herself by walking or moving, she will lose control of her muscles and will begin to spasm and tremor. She can go so far as to lose the ability to sit, sliding down a chair or off the toilet. It varies from being rigid to being dead weight. The further it goes, the less she is able to communicate or even hear what is being said to her. I believe she even passed out at one point. Her hands curl. She has been to the hospital, but they never witnessed one of the episodes, so they said it was blood pressure related. I have taken her blood pressure during and after one of these episodes and it didn’t change any more dramatically then it normally does. She has orthostatic blood pressure. Her blood pressure always drops when she stands and moves. This is NOT blood pressure. The nurses and doctors are at a loss. They have never witnessed one of these episodes and are all hesitant to make any kind of diagnosis since everything they can think of wouldn’t come and go like these do. When I take her to the doctor, it’s on a ‘good’ day, otherwise I wouldn’t be able to even get her there. From my reading, I think they are seizures. Has anyone else ever experienced anything like this? Or even have a direction for me to explore? We are looking to improve her quality of life, not necessarily treat comirbid conditions that would cause more distress than benefit since her dementia is progressing SO quickly.
This sounds suspiciously like something cardiac related, but I'm not sure it's worth it to do a work up in her current state of advanced dementia. Was brain imaging done to rule out Normal Pressure Hydrocephalus? Is her care managed by a geriatrics specialist?
(sorry, I'm no expert and am just tossing out ideas... you must be at wits end)
I do believe that it was at that hospital visit that we were introduced to the head of geriatrics. He said to us "If you're not going to do the treatment, then don't do the test".
It's such a good way of looking at things.
The docs say not Parkinson’s due to the specific of the conditions surrounding the episodes.
While in the hospital for 3 days, she wore a halter monitor and no cardiac episodes of any sort were noted. She was wearing it bc her heart rate was low.
I can’t put Mom through another MRI, she would never be able to hold still that long, and I have a feeling that anything that it would diagnose wouldn’t be something we would choose to treat.
I am not good without answers. I would want to know exactly what is killing me, even if nothing could be done. That is not her personality, so I am not putting her through more testing than absolutely necessary.
Like I said before, it is quality of life. If this is something that could be abated, if not eliminated, we can pursue it with everything we have. Otherwise, we will deal with the episodes with palliative care.
This is a life journey no one should have to take.
www.mayoclinic.org/diseases-conditions/vasovagal-syncope/symptoms-causes/syc-20350527