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?
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.
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.
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
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.
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?
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.
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.
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.
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.
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.
You just contradicted yourself in your post. If the pacemaker was not intended to extend life, doctors wouldn't bother implanting them.
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.
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)
Not seeing the complicated part.
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.
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!
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.
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