Stage 6 - How Much Medical Care is Appropriate?

Denise1847

My DH is in stage 6 in memory care. He has afib and CHF which is managed with meds. He has a cardiologist appointment the end of July for a check-up. It has become extremely challenging trying to take him for appointments because he is so confused. I am questioning why I should even take him. He is a DNR and I have already told the doctor no pacemaker or defibrilator as we had discussed and signed Advanced Directives about this some time ago.

Is anyone else facing this problem. It would seem to me to address those things which will support his quality of life as opposed to extending his enduring this horrible disease. Any thoughts?

Quilting brings calm

Is the cardiologist prescribing the meds for the Afib and CHF? If so, you will need to either continue the visits or discontinue the meds. Which is probably not happening. Can you call the office and see if they do video appointments? At least then you can just do the visit on a computer that has a camera and a microphone.

SDianeL

I cancelled all specialist appointments for my DH . The facility had a physician on staff that prescribed all his meds. We did not stop the meds until he was on hospice protocols.

Denise1847

https://alzconnected.org/discussion/comment/246690#Comment_246690

The memory care doctor continues to prescribe the cardiac meds for afib and CHF. The video appointment is a great idea. Thank you.

Denise1847

Thank you. The memory care doctor continues the meds and oversees his care. He is still mobile but terribly confused. No one has deemed him "hospice". It just seems so cruel to drag him to doctors and doing anything to extend this suffering. I just want to be sure I am not somehow playing God.

midge333

@Denise1847 : I think you are asking all the right questions and coming up with very solid answers. IMO, doing anything that prolongs stages 6 & 7 seems cruel…

Miles2Go

My DH was in the hospital 3 weeks ago with kidney failure, and they discovered he recently had a heart attack and had an aortic aneurysm. We were treating the kidney with antibiotics which worked great to remove the infection. Cardiologist wanted to put him on various meds. I said no because he was not going to follow up for visits, and the doctor agreed because DH had dementia mid stage 6 and is 85 yo. The following day another cardiologist came into his room and i repeated my conversation. He walked out and returned to tell me DH could have another heart attack so i should reconsider. I told him of my husband’s memory decline and said he did not have a quality of life so i did not want to prolong his misery, as difficult as this is to do. DH has an advance directive signed several years ago and he does not want anything to prolong his life. I suggested the doctor leave and he waked out annoyed. Too bad. I’m honoring my DH wishes.
This is very difficult but we must advocate for them and recognize they cannot return to be the person they were before this horrible disease entered our lives.
Go with your understanding of his wishes and be at peace with your decisions.

harshedbuzz

@Denise1847

Color me confused.

I'm pretty sure the decision around hospice care is made by the patient or their legal representative and the hospice agency. You don't need a doctor to support your decision. Some folks here have been turn down by one hospice provider and accepted by another on the same day.

That said, treatment of the qualifying condition(s) is generally stopped with comfort care being the priority so O2 and even antibiotics can be prescribed if they treat pain or distress.

HB

Denise1847

https://alzconnected.org/discussion/comment/246738#Comment_246738

Dear Miles2Go,

I applaud your advocating for your DH. My son and I discussed my DH's current state. He has long ago left us and if he were of sound mind watching this unfold, he would not want to live like he is. I think these specialists just look at their special part of the person and forget the humanity and whole picture.

Denise1847

Thank you to all for your thoughts. I reached out to the cardiologist to discuss the situation. He was very supportive of stopping the in person visits, offered telemed or a phone call if we should need him.

midge333

@Denise1847 : You did a great job advocating for your DH.

Palmetto Peg

We have to advocate for our loved ones, and you did a great job for your DH! I have a DNR, DNI, and Do Not Hospitalize order for my DH. There is no way I will prolong this suffering for him. I am at peace with these decisions, knowing that is what he wants. It is hard because some doctors really guilt trip you. I let myself be talked into allowing a feeding tube for my mother after she suffered several strokes and could no longer swallow. All it did was prolong her misery and make her uncomfortable. Stay strong!

midge333

We all need to remember that the default of the medical system it to intervene or provide treatment. When we deem it no longer in the best interest of our loved ones, we need to say NO.

housefinch

I totally agree. Great job.

M5M

https://alzconnected.org/discussion/comment/246957#Comment_246957

Peg, what is a DNI? intubate? I didn't see it on the Abbreviations list, and it is not used in my area.

weareallunique

And it is important to act very calm , rational and lovingly concerned. The Doctors need to document why they aren't following standard care to cya and it cuts their follow-up income. Too emotional and then they 'll get others involved . Probate court is worse and more costly than dementia.

https://alzconnected.org/discussion/comment/246962#Comment_246962

This- and the best way to do that is to avoid places that provide care you no longer will pursue. So if you are just checking what condition the condition was in ….

https://www.youtube.com/watch?v=-0-7fg8oAO4&ab_channel=KennyRogers-Topic

upstateAnn

After a quality of life discussion, my husband’s cardiologist has discontinued Elliquis and a statin. Metropolol is next up for discussion.

????

We found out four years ago that my wife has Alzheimer's. Her father had ALZ, so we know the drill. It is her hope that she does not have to go through the whole journey. We have filled out advanced directives, powers of attorney, etc. So as things go along, I can see me making the decision not to do some medical treatments if it is just prolonging her life to follow the ALZ trail. That is our choice, others may have different ideas for their love ones.

Maru

https://alzconnected.org/discussion/comment/246738#Comment_246738

My DH is not yet in stage 4, but he and I agreed from the beginning that we would do nothing that would prolong his life. I will make sure that everything is done for his comfort…antibiotics and so on, but there will be no life extending surgeries. I will honor his wishes as best as i can.