Holistic Care of LO

Dave Cahail

Do any of you get frustrated with medical staff when you take your LO to appointments and try to get them to understand your LO's inability to comprehend and process what they are being told?

I have had several instances of taking my mother who has Alzheimers Dementia and who lives in an AL / MC facility to doctor appointments where they don't ask about mental comprehension. Its always about the specific physical issue at hand. 

Just a week ago, I took my mother to a cardiologist to have a heart checkup. When we checked in, they weren't going to allow me in for the appointment even though I am my mother's health POA. I have to explain to them, while my mother went to the restroom, that there was no way I was going to allow my mother in to see the cardiologist without me being there due to her inability to remember anything the doctor would ask her or tell her. She can't remember her medical history either. 

I had to hunt down my mother's orthopedic doctor a couple years ago after he examined her and said everything regarding her hip replacement looked good. He didn't understand that my mother took this as she was totally fine and could go home and resume her life as if nothing had happened. He had no clue of her mental state. Thank goodness I was there to fill him in.

I would love the colleges and medical institutions to take a more holistic approach to treating people, especially in their later years to realize it isn't just about orthopedics, cardiologist, oncology, etc. They need to understand the patient from a whole perspective. Examinations, diagnosis and treatment of a physical situation has no meaning without mental understanding and comprehension. 

I would also love the Alzheimers org take this on and lobby the medical industry to provide this more holistic approach. 

We all want to make sure that our LOs are taken care of but it has to be holistically, not just for specific physical issues.

Iris L.

Holistic is not a term most doctors use.  I was a doctor in my career.  Treating the "whole patient" was how we were taught.  Current day medical practice seems to be more rushed.  I suggest that you lead off with the fact that your mom has impairments and that you are her medical POA.  Some members fax a note before the visit with concerns. 

What you're saying has been addressed in the past. Doctors who care for older adults are retiring or leaving medical practice or declining Medicare reimbursement.  There will be fewer doctors caring for or specializing in the medical care of older adults.  

Iris L.

BassetHoundAnn

I've in general been very impressed with how medical professionals have handled my mom who is a stubborn, exasperating woman with Alzheimer's. I've been especially impressed by nurses and CNAs to the point where I often wonder if they have some special gene for handling people like my mom. I watch them in awe and I have learned from them. Dentists and dental assistants too. They've been amazing in caring for her, keeping her calm. 

Residents and internists, who are young, often seem to come bounding in innocent and unaware and start asking my mom questions as if she were a rational being. "Why are you here?" they ask without first reading her medical file. She'll give some totally nonsensical answer like "I had a heart attack" or "I drank three martinis and fell on the floor" and their eyes will widen. I'll introduce levity by saying "Ask her who the current U.S. president is." She'll pipe "It's Roosevelt!" And then they'll start to wise up a bit and defer to my answers, but it's clear they're still learning, but that's good. They're smart kids and they always strike me as quick learners. 

I always print prior to planned appointments a one-page bullet list of issues and concerns. I attach to it a copy of mom's mental incompetency statement and hand it to the nurse at the start of the appointment. This has helped a lot, has helped to keep things focused even while my mom is chattering nonsensically about maladies she doesn't have and drinking martinis I never gave her (although I always have to clarify that with the nurse and doctor).  

harshedbuzz

Dave-

For the most part, I haven't had too much of an issue with this. A few of my parents' docs would ask after me if I skipped a more mundane appointment; they know I am a meticulous reporter and also translate information back to my parents so they can appreciate consequences of treatment. I also communicate via the patient portal, so they have a sense I am an active participant in the healthcare. Maybe I'm fortunate because my dad was late middle stage by the time I inserted myself into this and while his language skills were great he said really crazy things like telling his urologist that his "other doctor injected him with cat poison" or starting the visit by asking for his drivers license. 

Although, in COVID-times, it has sometimes been a challenge to be included during some of mom's medical care. My mother managed to have 3 hospital procedures during the pandemic in 2 different states and hospital systems and the rules and protocols are all over the place. But I get it. I can sometimes get around the rules lately by explaining that mom's a fall risk. With dad, I once got in by saying they'd want me there if he soiled himself. 

A couple things I do/did for both my parents-

1. I hand the tech a sheet of paper as they take vitals with medications listed, any new diagnoses, and for dad- a big disclaimer on the top that states he has dementia.

2. I typically contact a doctor ahead of time via the patient portal with my concern a few days ahead so s/he knows why we're there. Can you check mom's hearing? Mom seems off lately; I'm concerned she's not getting enough oxygen.

3. During appointments, I sit in the doc's sight line behind my parents and nonverbally confirm/deny the answers they give to questions they're asked. I suspect this is a standard practice as staff always ushers me to the chair that makes this possible.

4. As dad's dementia progressed, we focused more on the doctors he needed to be comfortable rather than be treated aggressively. We dropped the cardiologist, retinal specialist, GI doc and dermatologist; we kept the geri psych, pulmo, urologist (he was getting ADT for a recurrence of prostate cancer).

5. I find keeping them in a single hospital network as much as possible helpful. 

All that said, I do find some specialists hyperfocused on their organ system and not great at seeing it in the context of the little old lady who lives with it. There are exceptions- mom's pulmo, rheumo, ENT and cardiologists get high marks for seeing the bigger picture some of the others? Not so much. 

HB

DrinaJGB

You have touched on perhaps the most frustrating thing -- IMO--regarding care for the brain damaged LO. In nearly 12 years and numerous doctors .

I have little faith in this field any longer due to the stunning lack of holistic care of my LO who was given a 19% chance of recovery (due to a Misdiagnosis during the most critical window of survival)---only to have most of it left up to the caregiver (me)--in asking about latest research, therapies, testing, etc. In most cases my concerns and questions have been dismissed.

It has been a very long and very hard journey, but ,hey---DH is still here despite all of the obstacles and struggles.

dayn2nite2

At this point, why are you taking her for these routine appointments?  So she gets an outing or...???  Take her to lunch instead of an orthopedic check.

What you wish for isn't going to happen.  The specialist looks at your LO as the body part they specialize in and they don't care about the rest or whether she understands.

You're making your job harder than it needs to be by taking her to these "checkup" appointments.  Whether she's early or late dementia, she needs care for emergencies and comfort only.

Limit the providers and limit the appointments to pain, life-threatening emergency, or issues that affect her ability to enjoy her life, such as it is.