Med Care providers

LaneyG

Hi. There is a good chance my husband will be going into MC soon. The facility offers a medical service where he can get med help by their own PCP, a nurse practitioner. I fully understand the convenience and efficiency this could provide. However my husband has been receiving great care from his current PCP and team of specialist for his various health conditions. I do dread the need to get him to his appointments and successfully returning him to the facility. Just wondering what your experience has been.

There is a second part of this question. I question the need for a few of his specialists anymore. He has a DNR. I do not want to put him through dialysis if his kidney disease ramps up. Nor would I want to subject him thru chemo should the need arise for the leukemia that is currently just being monitored. I don’t see a need for any more stress tests or caths etc for his heart. He is a diabetic. His blood glucose is out of control due to not being in his home environment and periods of stress and agitation which cause his glucose to skyrocket. I’m not even sure how critical tight control is at this point. Of course reasonable control is warranted. God I feel like I’d be helping him to die! I hate this. I feel awful. How far does one go to maintain physical health for someone in Stage 5/6 dementia? Am I the only one considering this dilemma?

harshedbuzz

@LaneyG

We faced similar thoughts around the time we placed my dad.

His MCF offered an affiliated geriatrician and geri-psych. There were plusses and minuses to the geriatrician— he made his rounds very early in the am or as needed so we never actually met him which took getting used to. He served a couple facilities, so his schedule was often driven by emergencies rather than appointments. He was great about communicating by phone if he wanted to discuss a change of medication or discuss a concern. There geri-psych was great. She'd been recommended pre-placement but wasn't seeing private patients in her semi-retirement. She stopped by weekly as dad was adjusting to MC and I happened to meet up with her a few times. She agreed with the meds dad's previous geri-psych had prescribed and felt tweaking them wasn't necessary.

Around the time the placement decision was made we'd dropped his allergist and retina specialist. Dad was a solid stage 6, and his new PCP called to discuss his medications the first week. He was of the opinion that dad no longer needed his BP meds (weight loss dropped his readings), he felt the benefits of his statin weren't worth side effects and stopped his Metformin for T2D. We prioritized his breathing (COPD and mild pulmonary fibrosis) and moods.

One specialist we kept was his urologist. Dad had a recurrence of prostate cancer and had opted for ADT (a Lupron injection 2 x year) just before he got his diagnosis. Mom felt strongly about continuing the choice he'd made. Since the treatment wasn't onerous, had the potential to help with behaviors and prevent painful metastases it made sense. I got a lot of flak about this from mom's sister who felt strongly about letting "nature take its course". Getting him to the urologist's office was a bit of a dog'n'pony show that involved medical transport (about $150 8 years ago) and just exhausted him.

In a way, I kind of agree with my aunt's sentiment about not blocking a potential "exit ramp" that would spare a PWD the agony of stage 7. At the end of the day it didn't matter, dad died from complications of aspiration pneumonia about 2 1/2 months after going into MC.

HB

sandwichone123

My dh is followed by the facility doc. I met the first one on admission, but when he retired I didn't meet the new one until I took half a day off for a placement conference. I was concerned because the new one was so young, but he's been very easy to work with, calling to discuss changes to dh's meds, and open to feedback.

midge333

I think when the PWD reaches stage 6/7, we need to shift our focus. Do we really want to do anything that prolongs stage 6/7? The PWD's comfort becomes paramount and life prolonging treatments can be stopped.

Rick4407

LaneyG I suspect all of us in stage 8 went through those tough decisions. I focused on quality of life, things that made my wife more comfortable I proceeded with. As other issues arose I just dropped them by the wayside. It was not a single decision point. As appointments or issues cropped up I decided. Rick

M1

Hi Laney. I would definitely use the MC doctors and I think you are completely right to give up the specialists. We did the same, ditching rheumatology, oncology, ophthalmology, dermatology, and GI when she went into MC.

For an elderly diabetic, tight control is not important. You are not trying to prolong their life like you are with a 20 year old. Low blood sugar is far more likely to kill him than high blood sugar. At some point you can even quit checking it altogether. I would discuss that with the new team.

jfkoc

I would not give up private care until I had met with the facility Dr.

That said, I am not going to any Dr w/o knowing who they are and w/o a recommendation.

Dio

I switched to MCF's visiting doctor as DH's PCP. It was more convenient for me and less disturbance for DH. But his neurologist didn't change, and we can do telehealth with him so I don't have to take DH out for appointments.

HollyBerry

When my mom moved to AL here, we changed her insurance plan to a preferred-provider plan as suggested by the AL social worker, so she could work with their in-house providers as needed. It turned out to be really helpful not to have to worry about what was in network and what wasn't.

When she was in AL in New England the facility was experimenting with a primary who would be there a couple times/week and could manage meds and short term needs without leaving the building. There was some skepticism among the residents who didn't understand if they had to work with this person or not. My mom was just generally confused about it but I thought it was great, because she couldn't take herself to an appointment and none of us was nearby at the time.

Re the second half of the question - when and how to move away from the specialists. We kept opthamology because she had glaucoma. We never established a relationship with cardiology or any of the other providers she saw when she lived in New England, and just went with an internal med primary here. We declined screenings, did minimal bloodwork, cared for skin stuff, wounds, uti's; prioritized comfort in a minute-by-minute sense. Minimized trips in the car, maximized what we could do by phone or in-house.

terei

My mom had exceptional care from the Nurse Practitioner + Dr that covered mom’s MC facility. They had the experience from dealing with dozens if not hundreds of patients with dementia. I never personally met either one of them but received an email about mom every time they saw her + returned calls promptly when I had questions. I couldn’t have asked for a better experience.

It was a huge burden lifted when we did not have to transport her to medical appointments any more.

Jeanne C.

My husband is stage 6/7 and under hospice care. We've dropped all specialists, non-comfort meds, and procedures. The question I asked myself (and, frankly, his cookie cutter PCP) is what would be the point? No, he's not going to have a colonoscopy because I wouldn't put him through the prep or anesthesia for no good reason. No, he doesn't need a cardiologist because I'm definitely not going to subject him to a TAVR for his damaged heart valve. I've been happy with the hospice doc and care team. I suspect it would be the same with the facility doc so long as I'm kept in the discussion about his care.

LaneyG

Thank you all for sharing. You have helped me so much!

SDianeL

I just went through these decisions with my DH. He was in a VA facility. They provided a PCP. I found the best way to reach the doctor was to ask the nurse to send her a message. Always got quick response. I stopped all specialists. They did continue to monitor his blood sugar but the medication & insulin no longer helped much. I made sure the facility knew to provide palliative care. I honored his wishes. He progressed rapidly and passed August 12 due to aspiration pneumonia. I know how difficult those decisions are. Trust your mind and heart. 🙏❤️