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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?

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My MIL had a couple of seizures a year before before she passed. Husband's family refused MRI and even transport to the ER because there was no quality of life. She was also DNR.
If seizures are once in a while and not frequent, she may not need the meds to reduce seizures.
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A point on Hospice.
(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.
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I think I'd ask the neurologist what he is expecting to find, given that an MRI won't be a straightforward procedure for your father to be steered through, but I don't think I'd assume he's recommended it out of sheer curiosity.

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.
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Edited to add: Thanks for all the feedback. Lots of you have advised hospice care for dad at this point. However, I don't know that he is within 6 months of passing away. I'm doubtful that he is at that point yet, because he is probably just stage 5 or 6 of ALZ and is still recognizing us and having conversations with us. I feel a little odd asking for hospice to come in this early on. Any thoughts?
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lealonnie1 Jan 2023
Yes, you don't know if dad is hospice ready yet, which is why you ask his PCP to write an order for an evaluation. I've known folks to have hospice on board for 2 years! We have a poster here who's husband had in home hospice help for the last 22 months of his life, which was very helpful for HER in caring for him. Stage 5-6 is not 'early on' in the AD disease process, esp now that he's having seizures. Let hospice tell YOU it's 'too soon' and then they can reevaluate him in 6 months' time. Hospice reevaluates a patient every 6 months while in their care which Medicare requires, and if they qualify, then they get re-admitted every 6 months, or released, depending on their level of disease. Hospice doesn't mean dad is dying imminently, just that he's terminal *which AD is and is a Medicare-worthy reason for hospice care*
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Maybe time to move Dad to LTC. The only person with any Medical experience in a AL is the Nurse. At my Moms AL she was not there 24/7. The staff left were CNAs, no medical training. They are going to call the EMTs. They have no idea how to deal with a seizure. At least in LTC you can request they not send him to the ER when he has a seizure, just do what they need to.

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.
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rancks10 Jan 2023
Our LTC in this area is horrible! I was told that if I put him in a nursing home, his neglect would be so great, he probably wouldn't last a year. And from the stories from everyone else, I believe this is correct. The AL has been awesome and they have cared for my parents much better than I expected.
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No more. Palliative care might not be enough; maybe he needs hospice.
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I would not subject his to any more testing.
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.
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rancks10 Jan 2023
Did you take him in to the ER when he got seizures? My dad is in assisted living and this is his second seizure while there. I think it really scared them and they recommended taking him to the ER. I hate to go against their wishes next time, but I'm not sure there is any benefit in taking him there every time he gets one? Or maybe I don't know enough about seizures? His lasted 3 minutes. His blood pressure was slightly elevated, but all his bloodwork came back great and everything else checked out well. I'm just wondering what to do in the future if this happens again (and I'm guessing it will become more and more frequent.)
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Me I would not do it, good grief let the man alone you greedy doctors.
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I would not take my own father in for the 'recommended' brain MRIs for his brain tumor, what for? Dad was 90, had a meningioma that was growing.......there was no cure for it, so what on earth was the purpose of putting him thru a traumatic brain MRI (very noisy, to put it mildly) only to be told, "Oh yes, the tumor has grown and there's nothing we can do about it, off you go now. Have a nice day."

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.
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rancks10 Jan 2023
Yes, I've felt for the past year that it is in his best interests to let him have as much quiet and peace as possible. I used to take him to all the recommended visits and it was absolutely exhausting, both for him and me. He is definitely not as mobile as a year ago and much more incontinent. I can't imagine trying to change him in a doctor's bathroom to keep him from leaking everywhere. Ugh. But the way the doctor talked to me yesterday, I don't believe he gave a second thought to why it wouldn't be in dad's best interest to let him be. Sigh. He was a great doctor --- just didn't realize how hard this is on dad... or how pointless it all seems to me. Thanks for the feedback. Your story helped me to see things more clearly.
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The only reason I can imagine to know whether you are looking at a tumor or some other reason for seizure would be to give a medication that would stop the seizures, or what KIND of medication to give. There is otherwise no reason I can think of to know a diagnosis at this point; I agree with you.
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.
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rancks10 Jan 2023
Thank you for your honest feedback. It is very helpful. Dad still knows us all very well, so it is hard to say he is close to the end of this journey with that in mind. However, all other behavior seems to indicate stage 6 ALZ. Mom had an MRI and she hated it (she also has ALZ), so I can't imagine putting dad through it. If it is a tumor, there is no way in the world that we could operate on it. If it is because of dementia, well then... it is what is it and nothing can change.
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