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Am I expecting too much of our doctor?
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?
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.
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.
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.
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.)
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.
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.