My father had his second (known) seizure yesterday morning and I rushed him to the ER. They started him on seizure medication, but the doctor also wants him to see a neurologist and get an MRI to see why he is getting seizures. Dad has moderately advanced dementia (probably in stage 5/6). He still knows us all, but is very frail, walking with a walker/wheelchair, not at all talkative, sleeps a lot, is incontinent, etc. I just want to leave my father alone in peace. Doctor's visits are difficult and stressful --- we are dealing with huge incontinence issues (barely getting through two hours without needing depends changed, sometimes wetting pants, etc.) I just don't know what I would gain by taking him --- other than it would be nice to visit a neurologist again to do a memory test and get a second opinion on his diagnosis. But that is to benefit me, not him. Taking him could be a huge disaster with the incontinence issues. Honestly, we are quickly moving into palliative care. There really isn't anything that is going to stop the progression I am seeing. Am I missing something in not wanting to put him through this?
If seizures are once in a while and not frequent, she may not need the meds to reduce seizures.
(and I will say I am a HUGE proponent of Hospice)
It does not matter if you think he would qualify let Hospice make that decision. At least with an evaluation you will know where he is and what you need to look for. And there is always Palliative Care and they can watch for declines that would indicate he would qualify for Hospice.
Unfortunately so many people wait and they and the family can not take full advantage of all that Hospice can provide.
Please call.
What if the rate of progression you are seeing is not caused by dementia? If you're not sure that the investigations are worth putting your father through, ask what the aim of them is in terms of benefiting him.
Incontinence issues, be they never so dramatic, are potentially an embarrassing, smelly and time-consuming nuisance. But unless he's seated on the Bayeux tapestry at the crucial moment they cannot be a disaster.
If the MRI is closed, I may not put him thru it. I really see your dilemma. But, it may be better to know what is causing the seizure to be able to medicate for it. No surgery just medicate. I too got to the point there was not going to be anymore prodding and poking of my Mom.
To do an MRI he would probably have to be sedated and that usually has complications when it comes to dementia.
Further testing will not tell you any more than what you know already.
My Husband had been diagnosed with Alzheimer's and I suspect he also had Vascular dementia as well. He would have an occasional seizure the Hospice Nurse said they were "myoclonic seizures" and I left it at that. I did not request any other testing. I did talk to a Neuropsychologist and he also agreed that further testing would not be of any real use.
Same with your dad who's suffering from dementia, as my mother was. All the rigmarole involved for YOU to get the poor soul there for a stressful MRI, only to be told something like "Oh yes, your father has a brain tumor and we can do nothing FOR it, have a nice day." Leave the man in peace and just keep him on the anti-seizure meds the doctor gave him. That's what I'd do if it were my father. I feel your pain, too. To be 'told' to do something by The Doctors, and to Say No makes you feel like you're doing dad some sort of disservice, but in reality, you're doing him a FAVOR (in my opinion).
The way things ended up with my father is, I had to take him to the ER when he was slumping over in his chair at the ALF he lived in and they wanted him to move into a nursing home b/c he became a 2 person assist. He lived in the AL with my mother, so there was NO WAY I was placing him in a SNF all alone. So I brought him to the ER and they did give him an MRI, which showed his brain tumor had grown and was causing him to slump over, and the docs gave him 6 months to live. That's when I hired hospice, and the AL agreed to keep him until death since hospice was on board to add an extra layer of help to his care. He wound up passing 19 days later. BUT, I'd put off that MRI for as long as I was able, at least. He passed in comfort & peace thanks to hospice, which may be something to look into for your dad here soon.
As far as seeing a Neurologist goes, why put dad through more 'tests' to see how far his dementia has advanced? It's advanced further than it was 6 months ago and not as far as it will have advanced 6 months from now. My mother scored an 18 on the SLUMs test back in 2016 when she was first diagnosed, at my urging, during a hospital stay. In 2019 during another hospitalization, she scored a 9. What's the difference, really? Only that we knew mom had declined dramatically over that time period, with or w/o the test score to prove it. She went from regular AL into Memory Care AL in 2019, and passed away under 3 years later. She continued to decline during those next 3 years as well. When she saw a Neurologist in 2019 at the hospital, she wanted me to take mom in for a 'follow up' in her downtown office. I said 'what for, there's nothing you can do for her, admittedly?' The Neurologist was shocked and flabbergasted that I'd asked such a question, and said it was 'necessary'. I begged to differ and never took mom in for that follow up!
I got mom on hospice 2 months before she passed in Feb of 2022; she too knew who I was & wasn't 'all that bad' but still dramatically worse than she'd been. It's only with Alzheimer's mostly that a patient forgets their loved one's faces. It's never too early for a hospice evaluation b/c having that extra layer of HELP for YOU and for dad is amazing. "Meds" are not given until & unless you want them for pain/agitation.
Do what YOU feel is in your dad's best interest here, not what the 'experts' tell you is right and coincidentally puts more $$$$ in their pockets.
Wishing you the best of luck with a difficult situation.
Whatever reason Dad is having seizures, there is no cure for that given where he is. I also agree that you are looking at palliative care, even perhaps hospice. If they wish to do an MRI they would likely have to sedate your Dad completely. I would tell them that if they feel it is important enough to do this test you would allow it only if Dad is ADMITTED the morning of, or the night before, sedated, kept until fully awake. That would leave THEM in charge of the incontinence issues. If it isn't important enough to do that then I would request palliative care consult or Hospice soon as possible.
I am sorry, but seizure activity now means in all likelihood that something BIG is going on, and it is almost certainly nothing that anything can be done about other than giving one more med in the med tray. This is a tough one. Seizure activity will make Dad more vulnerable to falls. It is often something like this that marks a beginning to an end with falls leading to pneumonia or infection, and with nature taking an inevitable course. As you mention palliative care I know that you already know this. I couldn't be more sorry. To me now it is a matter of how much peace you Dad can have in all this.I sure wish you good luck in this decision. So much of whether this can/should be done now has, sadly, to do with logistics.