Where do you draw the line on medical interventions?

Jeanne C.

Like most of you, I have medical POA. I struggle to find balance in his care. He has coronary artery disease (managed with meds and diet). We learned a few years ago that he has a stenotic heart valve. I had no problem recently telling his cardiologist that we would not be pursuing treatment for it (a TAVR procedure). I think it would be too traumatic for him. And what would it really accomplish?

Where I get hung up is with smaller things. For example, he needs dental work but is resistant. And this morning, we were supposed to see the GI, and he refused to go (he's still sulking in the bedroom about it). When do I push and when should I let it go?

ButterflyWings

If not in pain or risk of infection, we let it go. (e.g., a UTI or something else treatable by oral antibiotics, or if he had dental pain would be different.) Granted, we are late stage 6 now, but this has been the med team's and my recommended approach since mid 4 or 5 - once he became resistant to preventive things like you are describing.

Once it started to require an act of Congress to get him out the door and into the car, (and actual firefighter assists to get him back out of the car, or into the house) - well - DH and dementia made it very clear for me. it was obviously time for us to stop with the optional procedures.

I think what you are dealing with today is par for the course for many, maybe most, PWDs by the way so join the club. I hope he forgets that he's irked soon (can you distract him with ice cream or if upset stomach today (GI issues?) maybe some music or other activity he likes) so you can both let it go and enjoy the rest of your day.

M1

Jeanne it is so hard to know. Certainly with some of the more invasive things--including GI, as per the recent colonoscopy discussion===I wouldn't do it. Dental and skin are harder. After not taking my partner anywhere for more than a year, I recently took her to her dermatologist to have some facial skin cancers removed, because they were bothering her. One was a squamous cell, which can be invasive, and I guess I'm glad we did it. She was quite cooperative--that has yet to be a problem for us. Dental i have pretty much decided to let go. I don't think she brushes her teeth very often, only if I am there to cue her. But she's not in pain, so even routine cleanings feel like too much trouble at this point, and I do think she might have difficulty cooperating with those.

You mention cardiac--if he's on meds and diet, I'd leave well enough alone. That's what's recommended for most folks these days, and I wouldn't worry about checking his cholesterol or any of that. Absolutely you made the right decision about the TAVR (I think i remember that being discussed on these boards, if it was you).

It certainly gets to the point of "if it ain't broke, don't fix it." A lot of the maintenance/screening recommendations are made on the assumption of not having other problems, and all have to be taken with a big grain of salt.

PookieBlue

JeanneC

   My DH also has Coronary Heart Disease (CAD) and had a heart stent placed about 7 Years ago. Three months prior he had an abdominal aortic graft place which had to be replaced three years later because it was leaking. He currently appears to be stage 6C and back then probably a stage 5. On one of the first visits he pulled out all his IVs, removed his EKG leads, and even pulled out his urinary catheter. Ouch!

   I just want my DH to be comfortable and if he doesn’t cooperate I don’t push it. He did well earlier this year with two dental crowns. I do most everything for him. I always give him simple directions. 

   He had a physical last month as I am hoping to get some occasional day care help. At this physical, his Doc had to fill out (Physicians Order for Life Sustaining Treatment (POLST). To my chagrin, my DH chose full resuscitation. I certainly do not want that for him and am not sure what to do. Apparently, I will need to avoid him being admitted to any institution where that could happen. When we had our wills done five years ago, and discussed end of life care, I thought he would not have wanted that. And now this?

M1

pookie, I take it you don't have health care power of attorney for him? You probably need it, if at all possible. I don't see how he could possibly be expected to make decisions for himself.....

PookieBlue

I do have health care power of attorney and I showed that to his Doc, but the POLST was a different document for his chart and Day Care

ghphotog

That's a good question as I wonder when that time has come to.

I think anything that is treatable without a major procedure I will continue right now. My DW has hip and knee pain due to arthritis and could possibly need replacements in those areas. Without possible future surgery the pain will eventually become unbearable but at the same time I really don't think she could handle a major procedure like that. Just hoping it doesn't come to that. She is healthy otherwise and could still live a long time even in stage 5 or 6 so "what to do?" IDK, I think a big operation like that would send her to the edge but she may be stronger than I expect and surprise me.

M1

FWIW ghphotog, hips are a lot easier to recuperate from than knees. Postop pain from knee replacemetn is pretty fierce. But with hips, you have to ask about anterior vs. posterior approach: posterior is the old standard but carries a risk for dislocation if you move the wrong way, and that could be hard for someone with dementia to remember.

Quilting brings calm

Pookie… my step-dad chose full resuscitation at his last annual wellness visit. This was a 180 from the year before and from his last hospital stay. It’s the way the doctor asks the question and interprets his answer. Because we did not discuss a feeding tube this year and the doctor marked yes for a temporary feeding tube. It annoyed me for both the resuscitation and the tube because Dad will often say he doesn’t want to go to any more doctor visits including his cardiologist, cancer doctor and his new neurologist. I just postponed the first visit with the neurologist because he refused to go. He’s got a dementia diagnosis from neuropsych testing but the neuropsych doctor only does testing not treatment. His lungs will not tolerate any surgeries due to his COPD. I’m hoping that my medical POA will override his info when the time comes.

ThisLife

Twenty-three years ago, FIL was diagnosed with dementia. Had UTI and placed in rehab for IV meds and catheter. Released back to AL and doctor wanted catheter that flushed bladder continued for two more days. FIL refused. I confronted them about his ability to make decisions due to dementia. Was told as long as he could state his wished and we didn't have guardianship, they had to abide by what he said. Eye opening to this novice.

My H and I have done Trust, Will, DPOA and POA for Health Care and Living Will (LW). They were updated a year ago when we moved to a new state. Doesn't the Living Will stand as his wish for medical treatment? Or can he state something different and the LW goes out the window? I'm not really concerned about this happening as he doesn't understand and defers to me if the doctor asks him what he wants.

He won't refuse to go but I ask him if he wants to go/continue, he says No. He doesn't want to leave home or have his daily routine interrupted.

I've left it at comfort care. Any suggested tests/referrals would be met with, "To what purpose?" Received a card to test for blood in the stool from VA. I let them know we would not be doing that as we would not be doing any follow up procedures or treatment if so indicated. The Care Partner has to be okay with what the outcome of these decisions might be.

Jeanne C.

Thanks all. He's stage 5 and very distrustful of medical professionals (paranoid that they are going to commit him). It just didn't seem worth the argument this morning. And it sounds like you agree. I'm keeping him as healthy as I can and focus most of my time and effort on keeping him at ease. I think I'm just feeling extra worried this week because his sisters are coming to see him for the first time in 5 or 6 years. I'm expecting to be judged and it's making me doubt myself.

Quilting brings calm

== Doesn't the Living Will stand as his wish for medical treatment? Or can he state something different and the LW goes out the window? ==

I told my step/dads PCP that he’d told the hospitalist something no DNR previously, and that his response the day of the wellness visit was different. The PCP said his verbal answer in any subsequent hospital stay would override his answer at the wellness visit. Which makes sense as it would be the one most current to whatever the situation was. It’s just that dad changes his mind every time he is asked.

Daughter of a Marine

FWIW, my DH who was diagnosed with dementia 10 yrs ago at age 65, had extensive back surgery 2 yrs ago and was under anesthesia for 5 hrs. Due to the lengthy time under as well heavy duty pain meds, his dementia worsened and he has not regained ground he lost. I regret that surgery especially since he is in more pain, not less. Going forward he will have medical intervention only when minimal and related to his comfort. Wish I'd known then what I know now!

loveskitties

Jeanne C., you mention that LO's sisters, who have been absent for 5 years, are coming to visit and you are concerned about being judged on how you are caregiving.

You can't let opinions of others, distant relatives or not, impact you. No one knows what it is like to care for a dementia patient unless they have been in the trenches themselves. The general perception of dementia is it is just memory loss...if only that were true, but we here know that is only the beginning of personality changes and needs with daily routine.

As long as you can look in the mirror and feel the person looking back at you is doing the best for your LO, you are doing OK, regardless of what outsiders may think.

Hope that you have other supportive people in your life who can help you past this visit.

ButterflyWings

Jeanne C - trust yourself and your expertise. You are the expert on your DH. Full stop. Take a look at Bill_2001's sobering, but uplifting post "The Cavalry Is Not Coming" if you need encouragement.

A question, do you also have property/financial POA? 5-6 years is a long time between visits and my in-laws just resurfaced after about that same timeframe and they are looking for early inheritance. Hopefully you don't have to worry about anything like that, but if I were you, I would seriously hide the Will, original POA's and any important papers.😕🙃

Jeanne C.

Thanks @loveskitties. There's a lot of drama and history there. My husband has been estranged from them for some time. But I let them know what's going on and now I'm dealing with them being upset that neither is on the POAs we have in place. I also feel that they're trying to gaslight me with regard to the estrangement.

In all fairness, they were caregivers for their mom, so they do have some insight.

I do have a support network in my family, particularly my cousin who lives nearby and has been close with my husband for 25 years. I'll be fine. It's just those niggling doubts that get to me sometimes.

Jeanne C.

@ButterflyWings thank you. And yes, our documents are complete and secure.

toolbeltexpert

Funny this topic came up as I was talking with a friend about the polst and the decisions I had to my. I used my dpoa and the questions were never discussed with my dw, it's all on me. I have it somewhat limited as to what can be done. They told me I can change it at anytime. My dwcis a dnr and would recieve oral antibiotics for a treatable condition, ie, a uti or similar. I definitely struggle with the feeding issue as I see some folks linger on for years completely dependent on the cna's for everything. If dw gets to where she can't or won't eat thats gonna be a tough call. When it comes to any pain thats easy, treat it. I have found this topic helpful and it comes up every now and then. Thanks Jeanne

Iris L.

Let them care for him for a few hours while you take a break. And don't feel obligated to answer any questions you don't want to.

Iris