She was diagnosed with Alzheimer's in 2013. She was fine for a long time, but ended up having to have her left knee and hip replaced in 2015. Before that, the orthopedic surgeon had given her steroids to try to help and it seemingly caused an abrupt deterioration in her cognitive state and increased confusion and disoriention. Afterward, she largely recovered. Then in early 2016 she abruptly became incontinent and lost her ability to even so much as stand up or sit up. She had been able to walk with a walker before. I realize, of course, that this isn't a medical site, but the background seemed necessary before getting to the actual problem I need help with and advice on. I had to have her taken to the ER this Sunday because she abruptly projectile vomited and I was afraid she might have aspirated some of her food, which of course would cause Pneumonia, and I wanted to stop that from happening if I could. The right side of her face was sagging very slightly and I asked them to check to see if she'd been having one or more mini strokes. So, they did a CT scan, which showed she had enlarged ventricles in her brain. The doctor wanted to do an MRI to verify if she had normal pressure hydrocephalus, which is a treatable condition, unlike Alzheimer's. They did the MRI, and had a neurologist teleconference with me in the hospital room yesterday. He said that while there are no guarantees, of course, it was possible that at least SOME of her dementia might actually be from the NPH, and that if so, relieving the pressure could help alleviate at least some of her dementia. Obviously I'm not expecting it to do a thing about any symptoms caused by Alzheimer's, nor to affect the progression of Alzheimer's, either. He said that instead of immediately doing brain surgery to install a shunt, that he'd recommend we have a spinal tap done, where they'd withdraw a bit more CSF than is normally done with spinal taps, so as to temporarily relieve some of the pressure in her ventricles. He said he'd want to have physical therapy do an evaluation BEFORE the tap, and then do another a few hours afterward, so as to have demonstrable evidence that it did or did not improve her cognitive state. My a**hole of an excuse for a brother has POA and he refuses to allow the tap. He claims the doctor is trying to run up unnecessary charges and that there's no reason to believe it would be of any medical benefit, and that it would just be causing her unnecessary pain and stress. It's ridiculous. Plus, the neurologist wouldn't even be doing the tap, he was just a consultant. He'd even said that with respects to the actual surgery, to install a shunt to drain the excess fluid, he would not go that route unless there was some very convincing evidence or reason to believe that it would be of great benefit to her. That doesn't sound like a scam to me. Is there anything that can be done to get him overruled so she can get the tap that would let us know if she could be helped? I'm honestly just utterly stunned and in disbelief that he wouldn't try to get his elderly mother any help that would possibly relieve her suffering a little bit for a while. Blows my mind.
The other kind is Medical POA, also called medical proxy or healthcare POA. It is often established in a healthcare directive.
Does your mother have a healthcare directive? Who is named to make medical decisions for her? If she doesn't have one, is she sufficently competent to create one now? Would she name you to make her decisions?
Bottom line, your brother probably doesn't have authority to refuse this procedure.
My all means, talk to the hospital social worker about this issue.
--Unfortunately, no, I don't have the money for legal costs to fight his POA.
--As far as I know, NPH wasn't even checked for when she was diagnosed with Alzheimer's.
--Thank you, I will definitely have to research emergency guardianship to find out more about it.
--Unfortunately he's the Medical POA also. I knew, of course, that general anesthesia could worsen dementia symptoms, but all the Neurologist was wanting done was to have a spinal tap done where they would withdraw a bit more CSF than the spinal tap normal amount, so as to try to temporarily relieve the pressure from the fluid buildup in the ventricles. He'd said the only way he'd recommend with go with a shunt would be if the spinal tap showed a very dramatic effect/improvement that there would be a justification for going that route, and that otherwise we shouldn't have it (the shunt) done. I did ask about a swallow eval to check for aspiration, but their speech therapist quit, and they're in the process of hiring another, so they didn't have one to do it.
--JessieBelle, that also is something I had thought about. She's 75. Don't get me wrong, I'm not getting my hopes up that a spinal tap would miraculously cure all her problems and make her good as new, but honestly, it would seem to ME that if it could lead to improving her quality of life and reducing her suffering even a LITTLE bit, temporarily, I myself would jump at it. There wouldn't even be a question about it. He's acting like the doctor is trying to defraud Medicare, that it would result in medical bills taking all her money, and that it's not medically of any benefit (he's not a doctor, BTW). She has both Medicare and Anthem, and what one doesn't pay the other typically does. When she had her hip replacement surgery the hospital charged over $80,000 for it, and she ended up not paying a cent. So I'd certainly think a 10-15 minute outpatient spinal tap, provided it was covered by her insurance (of course we'd get preapproval first before having it done), would certainly not even cost remotely that much. I'm not jumping to conclusions and saying that she absolutely HAS to have been misdiagnosed as having Alzheimer's when she actually had NPH, but I just wonder about it, the same as you do.
--No one said this, but I did want to say also that I'm very much aware that if she has Alzheimer's, neither the tap nor the shunt (if there was sufficient reason to actually go that far) would have the least effect on any symptoms originating from it, nor would it affect the progression of the disease. It's just that since the CT shows enlarged ventricles, and the MRI shows Normal Pressure Hydrocephalus, that surely we should at least TRY the tap, in case it might help to alleviate her suffering even a little bit. I've done some case study reading in Psychiatry prior to this, and I've read about multiple times that NPH was misdiagnosed as Alzheimer's, and that when the pressure was relieved the patients were actually vastly improved. I'm certainly not saying that would be the case here, of course; I just can't for the life of me understand why would he not at least allow it to be checked.
If it were me, I would a) ask the neurologist to explain to brother what he had explained to me. If that didn't lead to a change of mind in favour of the trial spinal tap, then I would b) ask the neurologist for his best clinical opinion as to your mother's overall best interest in terms of her ongoing quality of life - would he recommend this procedure in view of her advancing dementia; would he consider it a dereliction of duty not to carry it out if the decision were his alone? If the answer to b) is yes he would and yes he would, I would then run not walk to a lawyer and get this to court. Do you have the frightening amounts of money it might cost to get this kind of case expedited?
Alzheimer's, and all other dementias, are clinical diagnoses, in other words, they are based on symptoms and observations. You have to rule out other stuff before you dx dementia. I'm hoping she had an MRI or CAT scan back in 2013 to rule out other causes of her cognitive decline.
I sympathize with your desire to help your mom. It sounds like a very conservative approach to me. Is your brother on site? Will he talk directly to the doctors and/or social work department?
I'm not sure, what I would do. Putting someone through such a thing, if it's not really likely to help....? I don't know. I hope that you find some answers though. If you do not agree with your brother, you can go to court and try to get appointed her Guardian, so you can make the healthcare decisions. I 'd consult with an attorney about what that involves.
The big question to me is if she really has Alz or is it NPH. I don't know how old your mother is, but if she is not ancient, I would say yes to what the doctors say to try to relieve it. My main thought would be if she might be able to walk again if they got the pressure off. (That, of course, could depend on her age since she has been off her feet for a year now.)
The thing that first jumped out at me was the fact that she had suddenly lost the use of her legs and become incontinent. Now this does happen with the progression of dementia but I would want to rule out the possibility of some spinal injury either as the result of a fall or spinal compression from something like osteoporosis or arthritis. An X-ray CT scan or MRI can establish this. There probably won't be any treatment but it will answer the question of the cause of this symptoms, and these are non invasive and she has already tolerated an MRI
As far as the possibility of NPH is concerned, I believe the Dr told you that they would be able to get a better idea about this diagnosis by measuring the pressure of her spinal fluid by a spinal tap, but that he would proceed with caution on inserting a stent.
I think the first thing you need to decide is whether the procedure of stent insertion would negatively impact your mother's health. if the answer is it would then the spinal tap is of academic interest only. I do not believe they want to do it to pad the bill as brother suggests because I assume she is on Medicare and the amount they approve is minuscule even with additional insurance. How well could mom tolerate the spinal tap? Is she able to curl up in a fetal position and keep still while the needle is inserted? Could she lie flat for several hours after the procedure. There are also some slight risks
Only you know your brother and if he is always an a** then this may be why he has this reaction but in this case give him the benefit of the doubt before you fight him on his decision.
By the way enlarged ventricles on MRI are very common in the elderly and they may or may not be significant.
Not an easy decision but don't put Mom through unnecessary procedures.
Do talk to the social work department at the hospital. And please take care of yourself at this stressful time.
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