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Am I expecting too much of our doctor?
River Styx
Posted: Tuesday, August 13, 2019 9:10 AM
Joined: 1/30/2019
Posts: 43


My mother and I love our family doctor.  Since telling us that Mom has dementia, she has been great about requesting a nurse, physical therapy and occupational therapy for the time allotted by medicare.

However, when I ask what to do about specific behaviors or call about physical challenges (e.g. incontinence, loss of bowel control, delusions), she just says that part of dementia.  I keep thinking she should be able to do something for my Mom.  Am I expecting too much?  

I have requested referrals to a neurologist, but am not sure what to expect of them.  Can they help with medications that don't have side effects?  Can they reduce the number of hours she is delusional with medication?


ruthmendez
Posted: Tuesday, August 13, 2019 10:09 AM
Joined: 9/8/2017
Posts: 2146


I think yes. She is trying to be helpful, but I too find doctors really don't know as much as you do because you know your mother.  The doctor doesn't and does not live with her. 

I've accepted, "I am the main doctor in charge". 

I believe your family doctor is a good doctor.  But don't expect too much more.  However, she seems to be as helpful as she can be.  I think the best thing to do is go to the neurologist and ask all your questions.  We ourselves end up being the nurses and physical caregivers, but we should ask as many questions we have.   Nurses are very knowledgeable and helpful for the questions you have as well.


EN85
Posted: Wednesday, August 14, 2019 6:54 AM
Joined: 1/10/2019
Posts: 70


I honestly don't think so. I asked my mom's neurologist if he could give mom something to help calm her down in the late hours of sundowning and that stupid F*** told me that "there is no magic pill, you just have to deal with it" I stood silent for a second just staring at him because there may not be a magic pill to cure this disease  but there are plenty of meds to calm her down. Valium being one. I swear sometimes that doctors can be such jerks. You would think that they would want to help a caregiver manage this unpredictable disease as much as possible. At times they can just make you feel like since they aren't going through it, then it's not as bad as you tell them it is. I'm so mad that i didn't go to medical school and able to write prescriptions myself. Smh
NoSiblings
Posted: Wednesday, August 14, 2019 7:57 AM
Joined: 9/3/2016
Posts: 215


My experience is that you are better off with her family doctor. The sad truth is all doctors don't really know anything to do because there really isn't anything to be done. Your family doctor can prescribe anything a neurologist can prescribe, and most likely knows your mother and her situation far better than a neurologist ever will. At least that has been my experience with my mother. It is very hard to accept, but science really knows very little about this disease. There are not many medicines out there, and even those won't cure. If they provide any relief at all sometimes it's very hard to see, and often they don't do anything other than have negative side effects. It's hard to accept that so little is known about this disease, but unfortunately it is true.
SelEtPoivre
Posted: Wednesday, August 14, 2019 7:58 AM
Joined: 3/8/2018
Posts: 797


Mom and I share a wonderful PCP. BUT when I’d call him upset over new behaviors, while he was sympathetic, the answer usually was “it’s part of the disease”.  He didn’t have answers about how to deal with or interact. When there were treatable changes (sleeplessness, anxiety at being alone) the meds he prescribed worked very well.

Finding a geriatric care manager social worker filled the gap for my freak-out moments of “HELP, mom’s doing xyz...what do I do?!” SHE had the answers of how to handle the new behaviors. And I authorized her to deal with a few medical/administrative issues that needed an extra voice, and she subbed for me on a care conference call when I was sick.

A GCM can be an excellent addition to your care team.


harshedbuzz
Posted: Wednesday, August 14, 2019 8:24 AM
Joined: 3/6/2017
Posts: 1843


River Styx wrote:

My mother and I love our family doctor.  Since telling us that Mom has dementia, she has been great about requesting a nurse, physical therapy and occupational therapy for the time allotted by medicare.

That's all good stuff. 

However, when I ask what to do about specific behaviors or call about physical challenges (e.g. incontinence, loss of bowel control, delusions), she just says that part of dementia.  I keep thinking she should be able to do something for my Mom.  Am I expecting too much?  

These symptoms are part and parcel of the disease process. To that end, there is no magic pill or therapy that will "fix" incontinence. 

I have requested referrals to a neurologist, but am not sure what to expect of them.  Can they help with medications that don't have side effects?  Can they reduce the number of hours she is delusional with medication?

Maybe. There are certain medications that can address challenging behavior. If her delusions are driven by anxiety, relieving that could be helpful to you both. Sometimes these meds are prescribed for their side effects- like the sedative side effect of antipsychotics to help a PWD sleep at night. Dad took one to help with his hallucinations and anxiety; they did dial this back somewhat, but we still had to rely on validation and redirection to help him feel secure.

Based on my experience, a geriatric psychiatrist would be the referral I would ask for. Dad's neurologist gave him a complete workup and diagnosis, but beyond checking in yearly and turfing us to his social worker, he didn't bring much to the party. The geripsych was the one who improved our quality of life and who was willing to tweak his medications to find a combination to keep dad as calm as possible without sedating him. 



SunnyBeBe
Posted: Wednesday, August 14, 2019 10:36 AM
Joined: 10/9/2014
Posts: 786


Did her doctor go over the condition and explain what you can expect as her condition progresses?  I might do some reading and then make an appointment to go over some questions with her, so you aren't surprised by certain things.  Does she have Alzheimers or some other illness that is causing her dementia?  I'd ask about medications like Aricept, that are prescribed for Alz.  This type of drug is not designed for some other conditions though. There's a lot to consider with these meds, but, a doctor should be able to discuss it with you. Maybe, some on this site can chime in about it.  

My LO's primary doctor was awesome right from the diagnosis.  She was clear in what we were seeing.  So, I was not surprised when I saw the initial incontinence.  I knew that it was the progression and that I could not stop it. However, my LO's anxiety, worrying, crying, fears, etc. was something that she could help with and she prescribed a daily med for anxiety and depression that helped her a great deal.  Later, the Neurologist thought it was appropriate and then even later, she was seen by a geriatric psychiatrist who felt the med (Cymbalta) was appropriate too.  He monitored her and she continued to do well on that med. 

Other things, like forgetting faces, losing ability to speak, no longer being able to feed oneself, total inability to walk, came along and of course, there was no med for that.  (She has VD, so, medications not effective.) 


TayB4
Posted: Thursday, August 15, 2019 9:29 PM
Joined: 8/8/2014
Posts: 830


EN85, my experience has been that a neurologist will not prescribe any of the “psych” drugs. It is not their area. You need to see a geriatric psychiatrist for that. As an aside, the one time we saw my husband’s last neurologist she said to me,” those medicines aren’t doing anything. There is no cure.” (Referring to his Alzheimer’s meds). I told her, “they are helping  him to retain function for as long as possible. Why are they prescribed if they aren’t doing anything?” She didn’t have an answer for me. After that visit, I asked husband’s pcp to take over his care, which he did until I placed DH in a nursing home.
EN85
Posted: Friday, August 16, 2019 6:57 AM
Joined: 1/10/2019
Posts: 70


TayB4 thanks for the response. My mom's pcp basically wouldn't prescribe any psych meds and referred me to the neurologist. I am currently trying to get her into see a geri psych. I know that there is a long road ahead of me and these new behaviors are just the start. Maybe I'm being unreasonable and asking too much of doctors. I Just think i would just rather deal with a doctor who is willing to try anything other than just give an answer like it's part of the disease. No duh! But symptoms of any disease can usually be managed. I mean even if it's not their area at the very least give a referral to a geri psych, not just suck it up and deal with it. I just think that it's sad that any Dr. Would be so cavalier about concerns presented by a caregiver after all these years
King Boo
Posted: Friday, August 16, 2019 10:57 AM
Joined: 1/9/2012
Posts: 3091


There definitely needs to be a multi discliplinary care 'team' approach.  At least for certain parts.  Unfortunately, many private practice physicians do not embrace this as a sole practicioner.  It's horrid that a PCP doesn't refer on.  A good PCP would.

We (eventually) were managed in facility by an amazing geriatrician - who had no difficulty saying 'that's not my area, let's see the geriatric psychiatrist to see if anything could help", or "you need an oral surgeon, here are three that are very experienced with dementia population".

Neurologist, geriatrician, PCP, geriatric psychiatrist - all a core part of the dementia care team.  


Acoxe3
Posted: Friday, August 16, 2019 2:03 PM
Joined: 2/9/2019
Posts: 114


All of this great advice about finding a doc who specializes in gerontology/geriatric psych is so right on!   My mom now has a PCP who specializes in gerontology and is a board-certified internist.   Her former PCP and neurologist were nice enough, but their advice was limited.  Why they didn’t tell us that they didn’t know the ins and outs of dementia I don’t know—arrogance?  Embarrassment?  Ignorance?   There are so many reasons why people do what they do—motives are no longer relevant, and spinning down into that frustrated questioning will make us crazy!   What you can do is find a doc whose expertise and main focus of learning and research is caring for the aging and specifically, those with dementia.  Don’t be afraid to question the doc about background and continuing Ed; any doc worth his or her salt should not be afraid of these questions and actually should welcome them.   Your LOs quality of life is on the line.   Good thoughts to you and all your family.

 


LicketyGlitz
Posted: Friday, August 16, 2019 3:01 PM
Joined: 2/3/2018
Posts: 541


Styx, you're right on some levels, and your mom's doc is right on others. I don't think incontinence and loss of bowel control is within the "treatable" arena. However, delusions, aggression, depression, these are all treatable with medications. I second the advice to request a geriatric psych doctor to your mom's team. Ours has been invaluable to assist Mom with some of the more destructive dementia manifestations.
 
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