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My Mom is 90 and has moderate dementia. She lives at home alone. She had asymptomatic Covid two weeks ago and was hospitalized. The doctors say she needs a pacemaker. She doesn’t seem to understand what is involved despite multiple explanations. She has a DNR and doesn’t want to prolong her life and is anti intervention. This is complicated as I live in a different country from her, am an only child, and she had very little family. What should we do?

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Welcome, Rose!

Who cares for mom at home?

I was against my mom getting a pacemaker (she had dementia, CHF and lived in a Nursing Home).

My brother was POA and asked mom if she wanted it. She thought about it and said "yes".

We didn’t explain it beyond "this is something your heart needs to keep going". Could your mom understand that?
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sp196902 Sep 2023
Why would brother ask a person who has dementia what they want? I thought those with dementia werent capable of making decisions.
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She has a DNR this shouldn't even be a question. Honor your mother's wishes with no more medical procedures.
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Since your mother has a do not resuscitate clause, you must abide by this request and stop any medical intervention. Your mother has lived to a ripe old age and she does not want her life to be prolonged with medical devices and interventions. Your mother feels that she has lived a full life and it is now time for her to go.
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Geaton777 Sep 2023
Duped, a DNR and an medical therapy (like a pacemaker) are not the same thing. A DNR instructs health care providers not to do CPR if a patient's breathing stops or if the patient's heart stops beating. A "normal" intervention therapy like a pacemaker would need to be covered in a person's Living Will as something they would not want to have done.
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Here are two interesting articles about pacemakers and dementia

What Broke My Father's Heart
https://www.nytimes.com/2010/06/20/magazine/20pacemaker-t.html

If we did nothing, his pacemaker would not stop for years. Like the tireless charmed brooms in Disney’s “Fantasia,” it would prompt my father’s heart to beat after he became too demented to speak, sit up or eat. It would keep his heart pulsing after he drew his last breath. If he was buried, it would send signals to his dead heart in the coffin. If he was cremated, it would have to be cut from his chest first, to prevent it from exploding and damaging the walls or hurting an attendant.

Perhaps it’s no surprise that I also discovered others puzzling over cardiologists who recommended pacemakers for relatives with advanced dementia. “78-year-old mother-in-law has dementia; severe short-term memory issues,” read an Internet post by “soninlaw” on Elderhope.com, a caregivers’ site, in 2007. “On a routine trip to her cardiologist, doctor decides she needs a pacemaker. . . . Anyone have a similar encounter?”

https://journals.sagepub.com/doi/10.1177/1049909119855608
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My mother at age 98 got one, she is of sound mind and although has a DNR she agreed to have it done.

Made no sense to me at age 98, but I had no say.

Her swelling in her feet did go down. It did not improve her nasty toxic behavior though!
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overwhelmed21 Sep 2023
Same here MeDolly. MIL, at age 90, had a pacemaker installed. She is now 98 1/2. Still going strong and still as toxic as always.

In hindsight, though, she has said she wished she never got the pacemaker. She's ready to go and, in her mind, feels this is holding her back.
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DId your Mom create a Living Will when she was competent? If so, did you read it to see if this type of treatment was mentioned?

If she doesn't have a Living Will (aka Five Wishes aka Advance Healthcare Directive) then her MPoA makes this decision.

Is anyone her PoA? You live in another country and she has no other children and "very little family" (I'm assuming here in the States). She is still living at home, alone.

Does anyone check on her daily?

What is the plan for her care as her dementia, and maybe health, worsens? Does she speak any English?

Respectfully, her pacemaker issue may be the least of her problems right now.
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DNR means no pacemaker. "Doesn't want to prolong her life" means no pacemaker. Anti intervention means no pacemaker.

Not seeing the complicated part.
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MACinCT Sep 2023
DNR is only for resuscitation. A pacemaker is a choice and so is hospice
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Perhaps the bigger point is that the surgery for the pacemaker may make her dementia worse (because of the anesthesia), plus her DNR has to be suspended for the surgery.
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She has a DNR.
A pacemaker is not in line with that request.
She is anti intervention
A pacemaker is not in line with that request.
Add to that the fact that she has dementia.
Surgery will probably increase the dementia.
She will probably not return to her "base line" (what her level of cognition was 2 to 3 weeks ago)
She probably will not be able to remain home alone. (I will add that I do not think a person with dementia should be living alone)
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I agree with Grandma and others. This goes against her wishes. This is intervention, and while anesthesia for pacemaker placement is usually lighter than for other more invasive surgeries there is still a chance this will increase dementia. You should tell the doctor that you wish now to move her to Palliative Care and that there should be NO interventions with goals of increasing length of life. Most incidents involving the heart that do "take us" are relatively merciful given the options for end of life.
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A pacemaker is not a resuscitative device. It will not "restart" the heart, unless there is a defibrillator as a part of the unit. And the defibrillator can easily be turned off in the cardiologist's office, non-invasively.

My mom had a DNR and she underwent pacemaker implantation successfully. It was done under a local anesthesia. When she entered hospice, her doctor "turned off" the defibrillator, but that was more for us, her family's sake than hers. It was explained to me by her hospice team that her device would NOT keep her alive, but with the defibrillator on, it might shock her internally once she started her "transition", which would not cause her any pain, but can be distressing to family who see it.

If you are uncertain about this, I would talk to her cardiologist at length (or whatever doctor is recommending the procedure) and ask him/her all of these questions as well as voice any concerns you might have. Contact the doctor's office and see if they have an option for a Zoom meeting or some such video conference to talk about this. I would ask about the pros and cons of the procedure and garner enough information to make an educated decision rather than rely on the opinion of non-medical people who may not have the correct information.
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I would Not do an invasive operation Like that at 90 .
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swmckeown76 Sep 2023
I would. And my advanced directives state "always do everything", regardless of age or disability.
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"Obviously the pacemaker for your mother was a life extender. I don't know why people say they aren't. Isn't it like a defibrillator for the heart? Just wondering from when the pacemaker was installed how long your mother lived and her quality of life"

No, SP. A pacemaker isn't a "defibrillator for the heart". Most pacemakers that are implemented also include an external defibrillator ***HOWEVER*** the defibrillator has the ability to be turned off in the doctor's office.

My mother had her pacemaker implanted at 85 years old with advanced congestive heart failure. It wasn't "sold" as a procedure to prolong her life; indeed, it did not prolong her life. Nor did it not keep her alive once she was actively dying. What it DID do was to manage her A-Fib, which was getting to the point of concern that she was going to stroke out. While her dying of a stroke at 85 would have been sad, the GREATER concern was what would happen if the stroke DIDN'T kill her. There was the possibility of paralysis, blindness, unable to swallow, and all the other lovely things that go hand in hand with a stroke.

Did it make her quality of life better? That depends on how you would rate that. It didn't make it possible for her to run marathons or leap tall building in a single bound. It did nothing to make it easier for her to breathe. But it kept her from having a catastrophic medical event that would most certainly have made her quality of life WORSE if she had survived it.

When the time came for mom to go into hospice, I took her to the cardiologist to have the defibrillator function disabled. The tech came in with his laptop, typed in a few things and told her "ok, it's off". I've paid online bills that were more complicated and invasive than that.

The OP should reach out to either mom's doctor, if OP has HIPPA privileges, or to whomever mom designated that and ask THEM if this procedure is medically necessary. What potentially could happen if mom doesn't have it, and what is the likelihood that it would actually happen? Those were always the first questions we asked when it came to my mom as she got older.

While I agree that there are many medical procedures that become redundant the older you get - the post about the man with advanced dementia being told by his doctor he needed a colonoscopy leaps to mind - I don't think a blanket "absolutely no treatments whatsoever" is the right way to go either.
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olddude Sep 2023
Managing her A-fib extended her life.

You just contradicted yourself in your post. If the pacemaker was not intended to extend life, doctors wouldn't bother implanting them.
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Speaking from the voice of experience DO NOT DO IT. My mother has one, is basically falling apart but this pacemaker is keeping her alive artificially. My 95 yo mother was dying last year and the cardiologist said her heart could not sustain life. She had a DNR. They suggested a pacemaker. My sisters and I did not want further intervention but my father insisted that she have one. So she got one.

She cannot do anything for herself any longer, and all she does in sit in her chair all day and complain that she wishes she were dead. She is now outliving her finances.

No one benefits from giving a 95 yo immobile, incontinent person a pacemaker besides the hospital and cardiologist.
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olddude Sep 2023
Drop her off to the cardiologist that insisted on the pacemaker. Tell him she's his problem now.
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This is so confusing. Even on this thread we have posters who say that the pacemaker will not extend your life and others who say that it will.

So which is it? Obviously I can see how the pacemaker with the defibrillator can jump start the heart.

But what about a pacemaker without a defibrillator what is the point of this device? I mean if it's not to extend your life then why would anyone even bother with having one implanted except in the most extenuating circumstances?

It seems this is where semantics come in because a pacemaker without a defibrillator will not bring a person back from cardiac arrest but it does keep the heart beating at a normal rhythm. Whereas if a persons heart was slowing down in regards to getting that blood flowing and moving a person can suffer a stroke or other cardiac event due to their malfunctioning ticker.

Now for the semantics part online the literature all says the pacemaker will keep you living for your normal life expectancy which means a heart issue won't get you but some other disease like cancer or and illness like pneumonia might swoop in and off you one day.

But whose to say that this "heart" issue wasn't supposed to be the thing that did you in the thing that ended your life? What is a normal life expectancy? That is seems is all over the map in regards to who lives and who dies.

So from what I read online yes a pacemaker will increase your life expectancy and can prolong life and does for many people who would have died before said device was invented. I mean it has to DO something because otherwise you are just getting something implanted inside you that does nothing.
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Hothouseflower Sep 2023
Obviously if it is going to prevent someone from going into a-fib and dying it is extending life.
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"Pacemakers send electrical pulses to help your heart beat at a normal rate and rhythm. Pacemakers can also be used to help your heart chambers beat in sync so your heart can pump blood more efficiently to your body. This may be needed if you have heart failure."

Seems pacemakers just make sure the heart beat normally. From what I understand, its a simple procedure. If it will help Mom feel better, I see no problem in getting the procedure done. But I don't think it prolongs life. When Dementia hits the part of the brain that controls heart and lungs, the person dies.
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I would ask your Mother want she wants.

Don't get bogged down in medical procedures & medical terms (unless she wants them). If you can find out her big picture & her values you may be able to pick out the path from that.

Eg
A. Would she Consider or Avoid things to make her life longer?

(*Invasive treatments* like CPR, breathing apperatus or feeding tubes in order to prolong her life, regardless of outcome?)

B. Would she consider some treatments to hopefully improve her daily energy?

(a shortish operation *not very invasive* if that could give her a little more energy, a better quality of life?)

It can lead to good conversations about Length of Life vs Quality of Life.

My experience is my Grandparent was getting out of breathe a lot. Too exhusted to enjoy life as before. A heart event caused collapse & a pacemaker input (as no directive against). She was furious when awake! Why prolong my natural life? My Maker will decide when I go. No dementia at all but due to mobility was in AL.

Yet the pacemaker enabled her to regain her energy & she seemed to enjoy life again for some years.

The decision was made by the Doctor in an emergency situation, I'm glad it was not a family decision to make. I can't say which was the 'right' decision. Maybe there is no right or wrong.
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This has been a great discussion about pacemakers. I've learned some things and hope it has helped others too.
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At 90 with dementia, that would be a hard no. She won't understand the details of this procedure with moderate dementia. Do you have an activated POA? So tell her and her doctor that the answer is no thanks. My mom is 80 with moderate dementia and I would not do it.
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It comes down to dollars and cents. Is it worth Medicare and a supplemental insurance company shelling out $320,000 to fund a pacemaker for a woman with dementia? (My mothers bill was this amount) If she lives another five years, are the taxpayers paying for her care or does she or you have enough money to cover her expenses? Or is it better for insurance to cover her caregivers until she dies instead of implanting a pacemaker.

it might sound callous but everything in the USA comes down to dollars and cents.

Where shoukd the money be spent so it is used most effectively?
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swmckeown76 Sep 2023
People are not less valuable or less worthy of expensive medical care due to age or disability. Had my husband, much younger, but a long-term care resident due to frontotemporal degeneration, required a pacemaker, I'd have fought like tooth and nail for him to get it. He was hospitalized due to COVID-19 and not thriving. I was facing pressure to put him on hospice care. Instead I asked his neurologist (the medical director of his nursing home, but also a faculty member associated with the university hospital I asked my husband to be hospitalized in) to weigh in on the issue. He asked for additional tests. Turns out that hubby had a thyroid deficiency. He had also been somewhat combative so the hospital put him on an antipsychotic medication. The neurologist also suggested the my husband be weaned off the antipsychotic. These two things got my husband eating again and he left the hospital and went on to live another 13 months. I don't regret his extra 13 months of life for one second. Due to COVID-19 restrictions, his family from out of state might not have been able to travel to his requiem Eucharist in our church had he not had those additional 13 months of life.
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My honest opinion is that prolonging someone’s life when they are in the mid stage of dementia is not wise. So her heart keeps going strong and her mind is gone? No thanks. Alzheimer’s is a cruel beast of a disease. I would not prolong someone’s life suffering from if I could help it.
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My mother (90 w/AFib) in MC had COVID a year ago and has been bedridden for a year now. I don't know what your conditions are but I can't believe that my mother or yours could possibly have the strength to undergo surgery. COVID knocked the crap out of her! I'd be afraid once put under anesthesia that they wouldn't be able to get her to regain consciousness. Did you get a second opinion? I know that the Dr took my Mom off many of her meds and she seems to be doing better. Sometimes meds have a way of working against each other and sends mixed messages to the mind and body. I'm really feeling for you and I hope you find a way to make both of you comfortable.
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I think there is no one size fits all to this question.
Both my grandfather and my mom had pacemakers when their Dementia was diagnosed.
My Gram did an excellent job managing my grandfather who was a very gentle and confused sort of patient.
Versus my mom who is a very sad and angry one.
Mom was in her 60s when she had her pacer placed and they have already had to upgrade it at least twice. The battery has had to be replaced, the leads have had to be removed and replaced, it is a painful and agonizing procedure to have to keep enduring for my mom.
She has A-fib and had a stroke with the pacemaker, they are no guarantee that the person with the pacer will not have a stroke.
What turned Mom around was her doctors explaining to her why she needed to take the medication that helped the pacemaker work. She was not doing that, hence the extended Afib and stroke.
A pacemaker is only as good as the medical team that installed it.
My point being, find out why they are suggesting a pacemaker. Ask if there is a less invasive alternative.
My mom has had Dementia for years now and if she did not have the pacemaker there is no way I would ever place it in her now.
For context she is 81.
My grandfather needed it for low blood pressure, but I think that probably could have been handled today with meds, maybe not.
He died 27 years ago, and the field of Cardiology had come a long way.
This is a complex situation and I feel how much you want to do right by your mum. You will.
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This is such a personal issue / decision.
My heart goes out to you.

If it were me / my mother, I would honor her wishes. Clearly, she has a DNR in order already.

If you mom has some / a level of dementia and doesn't understand what is happening, that would tell me a lot.

"Try' to think of this from HER POINT OF VIEW, not yours. I know that is difficult. She is YOUR mother. Still, if it were me / my mom, I would question "why prolong life at age 90, with dementia / confusion / very little family. I would consider QUALITY OF LIFE vs quantity of time of being alive.

And, I wouldn't put my mom through that kind of surgery at age 90.

Another way to look at this is asking yourself "If it were YOU, what would you want your daughter to do - with you? Would you want to be kept alive - with the risks associated with surgery, and not being of sound mind?

I believe if you meditate and go inside - listen to your heart (not your head), the answers will come to you. Your intuition will serve you well. While this may sound 'voo-doo-ie' to some, I would meditate and have a conversation with your mom asking her "what do you want me to do?" I believe we can have conversations with others - in our moments of meditative silence. The key is to listen vs forcing words / thoughts that come from you/r perspective. Be open to whatever comes up and out.

In heart solidarity, Gena
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Connect her with Hospice in her area or near you if you're considering moving her closer to you.
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Speaking from experience....no. No. If I had to do it over again, I would have wanted my mother to go relatively painlessly from a heart attack than from what she is going through now...long, slow, decline. Without pacemaker, she almost died on her kitchen floor, independent, happy...but the pacemaker allowed her to live 6 more years and counting with no end in sight, and losing all her independence and dignity. Not to mention--the rehab after. It takes a lot out of a person.
I am personally against letting suffering go on and prolonging lives only to let us suffer more pain. Especially with dementia, which is mental torture in most cases. I wish I knew then what I know now. We are not meant to live forever, until we are shells of ourselves, just because medicine exists to keep the heart pumping.
Good luck to you, and rest easy if you let the pacemaker issue go. It sounds like you care very much about doing the right thing, but there comes time when medical intervention is...intervention. And not in our best interest. And even if hard for you to do--it was her wish.
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Hothouseflower Sep 2023
That’s exactly what is happening to my mother too, a long slow decline with no end in sight. She’s in the hospital now having survived covid but is now too weak to get out of bed and is waiting to go into rehab. She had been receptive to going into a NH, which my sister and I were working towards making happen, but now is giving her daughters pushback.

I’m mentally exhausted with dealing my parents’ issues. Her getting this pacemaker was a really bad decision. God only knows what her daughters will need to deal with now. She wishes she was dead and the rest of her family is starting to wish it too.
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No. Don’t torture her
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Get an accurate " level of care needs" assessment from her PCP. This will tell you if she can continue to live alone, needs ALF or skilled 24/7 care. A Geriatric Case Manager should be consulting. Since you say that she " cannot understand about the pace maker" this leads me to highly question her cognitive status to provide safe care for herself. Do you have POA documents to make decisions for her? It seems like it may be time for you to present yourself in person to arrange what will be done. Confer with an Elder Law Attorney in the state where she lives for both her protection and yours with regards to caring for the elderly. Like it or not, you may need to present yourself in person where she is .
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Roseoftheworld: A pacemaker is a contradiction to her wishes as she has a DNR order in place. Ergo, wherein lies the question? Never mind that she has dementia, which would compound the anesthesia required.
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I may be faciing this question myself soon. Right now I am getting ready to have a long time (6 months or more) heart monitor implanted. I am 89 and the only thing that scares me is having a stroke and NOT dying but being helpless in bed. I have already had multiple small strokes and one big one. My husband had a pacemaker, it did not stop him from dying when his kidneys failed. I say, if she does not want intervention, and it is written down go witih it. This is a reminder to self, self when I am done with doctors, be sure it is on paper.
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