Pacemaker for dementia Dad. Any thoughts?

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Pacemaker for dementia Dad. Any thoughts?

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My dad has dementia and has lived in a memory care facility for over 2 years. He is frail, beginning to have trouble walking, and is almost non-verbal. When of sound mind, he filled out DNR paperwork and made it clear to me he would not want to live beyond "quality of life". He even spoke of suicide/assisted suicide. He always said he would not like to end up like his mother, who spent her last years bedridden with advanced dementia.

Dad is 81. Lately there has been some discussion about him possibly needing a pacemaker. My reaction has been "No". If his body winds down naturally and he dies a peaceful death, I think that is what he would have wanted.

Part of why he was moved to memory care is that my alcoholic mother refused to care for him and said he was "not her responsibility" after 50 years of marriage. She has verbally abused him and has said many times he would be better off dead, she wishes he were dead, etc. I am generally the one that nursing staff looks to for dad's needs, although technically mom is first in line as POA. Mostly she is AWOL :(

This morning we briefly discussed the pacemaker issue and she says her answer is "Yes" to the pacemaker, if that is what the doctor's suggest.

OK: Thoughts from the Forum about pacemakers, Please!.....

Alzheimer's & Dementia Care Decisions Heart Disease

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At age 96 my Mother had a pacemaker put in. Abvisously she was satisfied as she lived an add'l 2 years.

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Rock, I think it is more of a question about is this something dad would want, considering his end of life wishes and his current medical status with dementia.

Quantity of life should never be extended when there is no quality.

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Absolutely not. My mother passed last month. I cannot tell you how happy I am for her. She was 79. We provided round the clock care for her for the last 4 years. She never wanted this situation but we made the very best of it. That means she had company and someone to hold her hand, etc. It also means we did NOTHING to extend this existence. No more hospitals, surgeries, etc. I had to fight hard to avoid a feeding tube during her last surgery despite the fact that her MOLST was very clear on that point. She also had a DNR. I can't speak for your mother or you but as for your father, you state he was clear about not wanting this kind of condition extended. Any hospitalization or anesthesia will diminish his cognitive ability. I watched it happen to my Mom and had many medical professionals confirm this link. My Mom, thankfully, passed in her sleep. The last 2 months she slept more and ate less. She was starting to get skin tears and pressure sores. I was dreading what horrors 'more time' would bring for her. My advice would be to do everything you can to avoid doing this to your dad.

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I want to thank everyone for taking the time to read and respond to my post. It has given me a lot to think about and generally has reinforced my gut feeling that it's not likely the right thing to do. If it comes down to actually having to make the decision, I will post what happens. Thanks much!!

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No. Besides all the other wise comments left below, there is a big risk for seniors regarding anesthesia (which magnifies their dementia permanently) and also taking strong antibiotics (same and other issues) which they would surely give him after surgery. What if he got MRSA (a common but nasty staph infection many people get in hospitals)? Also UTIs from being catheterized. Post-op pain. The stress/confusion of what's happening to him regarding the surgery itself. My mom was an RN for 50 years. She's 90 and is in dire need of a knee replacement but she won't do it for the reasons above. No, fight against it. Also, if your mom is an active alcoholic you could consider pursuing legal guardianship of your dad. Wishing you sweet remaining time with your dad.

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A loud NO!!!
4 years ago I was told that my husband, who has Alz. would not live through the night without a pacemaker. I consented. Only later, after he had it for months, was I informed that he will never die from a heart attack. The pacemaker will keep his heart beating. That is its job. So what is he likely to die from? Ask your Dr that question before consenting. It is not likely to improve his life, just prolong it. Is that what you want? I also have since been told that anesthesia can make dementia worse. Dr's make lots of $$$ with the surgery so they push for it. Speak to your Dr. about this, not his.
Good luck and HUGS
Jo Greene

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This just upsets me. Would a doctor want to live with a pacemaker if they had Alz? My mother’s doctor said my mother would need valve replacement surgery, pacemaker removal and new one inserted, when she turns 95 yrs old. All this about a month before my mother was referred to hospice. (My Mother is 93 now) and has end stage congestive heart failure. The doctor (a cardio) was being over zealous with my mother and promising she could help my mother live to be 100! I feel we will have to make a decision sooner - rather than later about her pacemaker battery. I am dreading the day. I don’t know if my mother will elect to do so or not. She is still of sound mind now.

My mother also has invasive squamous cell skin cancer that is out of control. But I’m holding my breath about a possible decision she will need to make about this pacemaker soon. I feel she is showing signs that the pacemaker is running low on battery life. Her b/p is very low. She is getting dizzy at times. Trouble breathing. But this could be something else too.

I will have to speak with hospice soon and see where they stand about replacing the pace maker. I have been her caretaker for 8 yrs now. I can’t keep up with her health problems as is. And my own health is in shambles. I am currently in chemo for nhl.

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Skip it. No sense to pacemaker! It will only help doctor send his kids to private fancy college or he will buy himself a new jaguar car

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Absolutely not! Eighty-one isn't terribly old, but if he's already in memory care you know it's only going to get worse. I read a book, unfortunately I've forgotten the title, by a daughter who took care of her parents. Her mother died from the exertions of taking care of a much larger husband so the daughter took over his care. When a doctor recommended a pacemaker she acquiesced. Later she found that her father's mind was completely going, but his heart was going to keep beating. It did for too many years. He had no quality-of-life, and her life was a misery of caretaking. I have said no to that for my husband with dementia.

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The book sounds very similar to Knocking on Heaven's Door by Katie Butler, though Ms. Butler's mother did survive caring for her husband. Being a caregiver had compromised her mother's health and her mom made completely different choices about medical care in her old age, choosing palliative care rather than interventions (such as heart valve repair with its stroke risks) and died lucid and as in control as one can be to the end.

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My father had a pacemaker put in at age 87. His mind was ok but he had had several strokes and was disabled physically. He later told me he wished he hadn’t done it, it just prolonged his physical decline but my mom wasn’t ready to let him go. So he lived on another 2 years getting more and more debilitated, incontinent, and miserable.

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Hello. My mother is 89 and has been on a pacemaker since 2006. I believe the battery life in the pacemaker is reaching the end of its life. I've been trying to decide replacing the battery. It's a hard thing to decide. In the situation with your mother still alive and MIA and the main POA for your dad, you have a doubly hard decision. I think I would ask his doctor for his/her input. Sometimes the procedure itself might be harder on your dad. You know how your dad feels about lingering. I'd be talking with his doctor. You may have a big fight on your hands with your mother, but maybe his doctor could intervene for you. Sometimes having a neutral party involved helps take the stress off the family. My mother has been a struggle for me mainly because she's been so hateful to me most of my adult life. So instead of me being the one to decide all by myself, I'm taking her to a cardiologist and make a decision with him. It's just a thought. I surely hope you are able to feel comfortable in whatever you decide. You have my best wishes.

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My Dad needed a pacemaker back in 2014 and the Dr said he probably would not survive long without it. My Dad was early in his dementia journey and was aware he had dementia.. and did not want a pacemaker or anything prolonging his life.. he had us cancel the surgery.

We put him on hospice and everyone came to visit him seeing that he wasnt going to survive long.. Well... his heart beat stabilized and he lived another 5 years.. he recently passed in April of an unrelated cause.

I would do what your dad wants... and it sounds like to skip the pacemaker. It could be a difficult road.. he could go the route of my Dad.. or he could have cardiac arrest... I know that is what I would want if I had dementia.

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What a mean-spirited woman. I do realize that it's the alcohol talking, but wishing someone you were married to for a half century dead is beyond any concept of humankind, normally! Then she decides it's a "go" for the pacemaker. Wow - that's really messed up. If the pacemaker is implanted and if patient is able to withstand the surgery, said pacemaker can be deactivated if warranted. Therein lies the question - why implant the pacemaker unless absolutely a guarantee on QOL betterment?

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No to the pacemaker, and follow his wishes. You know what he wants, advocate for him and his wishes.

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Absolutely right!!!

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Thanks everyone for the responses!!! Much to think about here and discuss with doctors when the time comes. I need to be armed with information if we are forced to make a decision. Like I said previously, I have no experience whatsoever with a pacemaker so I know the smart folks on the Forum would have needed insight. Thank you all!!

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A pacemaker will not cause his quality of life to decline.

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But will it improve his quality of life? And will it extend his life? For how long? Dementia, trouble walking, nearly non-verbal, living in a (probably locked) memory care unit for two years already... our culture's pursuit of longevity at any cost is mind-boggling!

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Wait a sec...she couldn't care less, wishes he was dead, and now she advocates for his being alive at all costs, which from what you said, contradicts his own wishes? He comes first. I don't know where you are, but around here we have two university affiliated medical centers. I'd consider another unrelated to the one you have your info from for a 2nd opinion. Great if Dad is up to it, if not have the records reviewed. Even if dad continues on without the pacemaker (which sounds questionable in need at the moment) he might be better/more comfortably maintained by an MD experience with cardiac care. People younger without dementia may refuse a pacemaker for a variety of reasons and still have to be kept going as best and as comfortably as possible.
Your dad may not be able to comprehend what he would agree to. It's very scary to me that your mom is first in line as POA...if that's what he has done, knowing she has problems with alcohol...that is a messy situation and I'd be seeking some legal advice. If that's true, you do not have any control...IF it is legal and IF it is medical POA that she has.
Do ask questions in re to the actual pacemaker procedure. It may help you decide. Some places/MD's get very concerned in re to anesthesia and older people. My Dad is in great shape...but after his 100th birthday, less than 2 months later, he didn't feel good and turned out to have a heart rate that was a steady 35 BPM. He is very vital, capable, involved (now at 102 he continues). So he was very agreeable to a pacemaker. He was admitted to the hospital around midnight, they did the procedure as I recall around noon the next day, he was back in his room within 2 hours and eating Chick Fil A an hour after that and home 24 hours or less after. BUT, and this is a significant BUT....we were not informed that the procedure would be done with local anesthetic and very little in the way of other medications apparently. He described it as the worst pain he has ever endured (and he's been through some significant). Just by how often he initially talked about it, I knew he had been traumatized by it. I had a friend (oral surgeon) who said but he IS here to talk about it, and that's what matters. The surgeon who did it very gently conveyed something about it but I translated: the gist of it was that too much anesthesia at that age and with that heart rate could have taken him. Would he/we agreed if we had known? I would have at least braced him for it. And I would have contacted other MD's to confirm this was the right way and the only way to proceed.
It seems to me you dad was pretty clear when he discussed things with you, and that your heart is leading you in the right direction. There is a company to help sort medical decisions out called Curadux. A wonderful (imo) doctor who used to be chief of anesthesiology at Cleveland Clinic started it, inspired by his own critical illness. He's as compassionate as they come and they will explain if insurance can cover the cost of a consult.
Wishing you all the best...

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When it comes time for the person to pass. The pacemaker can prolong the process. Everything else has shut down. But when the heart tries to stop beating. The pacemaker kicks in. I went through this with my father. He was basically dead but they couldn't pronounce him dead because the pacemaker kept his heart beating. It was a grueling experience. Just my opinion but i say, you should pass on the pasemaker. The people who are saying anesthesia will worsen the dementia are also right. It's hard on a person with dementia or Alzheimer's.

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It was my understanding that by passing a wand over the area the pacemaker could be shut down, for instance if someone was in hospice...

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I want to say please no. My mother had what we thought was the beginning of dementia. They did not knock her all the way out for the P.M. surgery. I think that surgery just moved her up in her confused state. I could never keep the sling on, keep her out of the shower or keep her dang arm down! This was a few years ago. Now we have an Alzheimer's diagnosis of about 10 years by a neurologist. She has been in Memory Care for 1 year now. She needed the P.M. to slow her heart rate down. Now we wish we had not put it in. It is a quality of life issue I agree!

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Since mom is the decision maker, perhaps go with her to talk to doctors about the pacemaker and ask questions that will help her make decisions:
Why does he need it? Will it actually help his quality of life or just prolong what he told you he did not want? Given his current medical condition, dementia issues, and what he said he wanted - ask doctor directly what he recommends.

Maybe if your mom hears all of the details, she will have second thoughts on what to do.

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And don't forget to ask about surgery/anesthesia for a patient with dementia.

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My mother-in-law had a pacemaker and had it replaced. at age 96 and lived to another 2 years!

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My Mom is 86, has dementia but not to your Dad’s extent. She did get a pacemaker in December and it made a major difference in her life. If your Dad is bedridden and last stages, it will prolong his life. Think about what he wanted. That’s the main reason to do anything you do for him. Good luck and God Bless.

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I have not read other answers to this, but my mother is facing replacing her 10 yr old pacemaker battery change soon. My mother is on hospice for end stage congestive heart failure AND she has invasive squamous cell skin cancer that it eating away her skin slowly but surely. I am not sure what my mother’s wishes would be when she has to make a decision about replacing the whole unit - as they just don’t switch out the battery. But my thoughts are this: Replace the battery so she can turn 94 and continue to go downhill with chf? Become a fall risk? Continue to be eaten alive by skin cancer? Continue to need more in-depth services from outside the home? Be in pain and discomfort every day?

I dont know what my mother will choose to do. She is still of sound mind. She would be afraid of the unknown and would probably choose to have the device replaced. It would be done by local anesthesia. She would be afraid to just let her heart slow down to a pace where it may just stop one night in her sleep. I don’t know, but these are things that must be thought of when determining if quality of life will improve or not. The new device will not cure my mother’s chf or her skin cancer.

These devices are good for those who have yrs ahead to look forward to. Otherwise, I feel they add to the patient’s burden and also the burden of those who care for them. I have taken care of my mother for over 8 yrs. My own health is in jeopardy. I was diagnosed 2 yrs ago with stage 2b NHL. Hospice is a God-send, but they do not do everything and my mother is not in hospice for her skin cancer. So we still have to treat outside the home every month for this. There is much to consider. Perhaps the staff social worker can help you? Doctors will want to do the procedure - they don’t have to deal with what follows except for their professional part of follow-up appointments.

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My dad got his pacemaker at age 100+2 months. He is now 102 and going strong like the Energizer Bunny. At his last pacemaker recheck appt they told him he had a good 10 years of battery left and he told them he intended to use every one:-) Of course there is no dementia in this story, beyond that belonging to my mother.

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My MIL refused a pacemaker and lived for two more years, dying at 90 in nursing home. I don't think she was in any pain, and thank goodness she died almost a year before my husband died of major stroke (and no gastric feeding tube for him). MDs want to keep patients alive at all costs, especially if insurance is paying for it. I myself don't even take statins or BP drugs anymore (I am 81). I am still fully mobile without assistance and even travel overseas....but I would not get a pacemaker for myself, much less a gastric feeding tube.

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It sounds like your dad is not afraid of death and wouldn't want anything artificial, such as a pacemaker. And did the doctor actually recommend it? Or did he just give it as an option? Just because you can, doesn't mean you should.

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Dementia patients do not do well with general anesthesia. Often it sets them on a bit of a more rapid decline and they do not recover well from the anesthesia.
At EOL (end of life) you will have to have it shut down or it will keep "zapping" his heart.
He has expressed his wishes in the fact that he has said previously that he did not want extra measures taken. I would consider the insertion of a pacemaker an extra measure. AND...while being operated on the DNR will be "suspended" so if he does arrest during the procedure they WILL do CPR, they will shock him and the great likely hood that doing CPR will break most of the ribs and possibly the sternum this will cause him great pain during recovery. A recovery he may not fully complete.
I would opt not to have the pacemaker put in.
Ask the Doctor..."if this was your Dad knowing what his wishes are would you proceed with a pacemaker? Will this actually IMPROVE his QUALITY of life not just PROLONG it?" (if it would actually prolong it at all)

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I have a feeling there is confusion about 2 different kinds of devices here...one is a pacemaker which will regulate a heartbeat/heart function, and the other is a defibrillator which will zap the heart if it slows down.

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Having a pacemaker will not make him live longer but will help him live more comfortably. A pace maker helps to regulate the heart rate. If his heart rate is too slow he will have trouble breathing or moving or doing any activities. He'll feel tired and sluggish. A pacemaker solves those issue to a degree. A pacemaker will not keep his heart going if it decides to stop.
My mom has a pacemaker and they also recommended a defibrillator. Personally I wish we had not done the defibrillator part of it. The defibrillator will set off if her heart stops and try to start it again.(it sends an electric shock) It's been in her for 3 years and it's not gone off once but now that she's 89 it will still go off even if it's her time and her heart has had enough. I don't think that's going to be a peaceful death. I asked the Dr later what happens when she gets to a point in her life when her heart wants to stop. (I mean 90 is kinda there it's suppose to at some point.) He said to me she will not die of cardiac arrest. Which means to me that the defibrillator will keep shocking her till her heart starts again. I don't see this as a good thing for someone in their 90's. It's would be even worse if quality of life was not there, alzeimers for instance. What would be the point?
I would be very frank with the dr. What is the reason. To prolong life or to make life manageable?

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What does your mom say/feel about this? I believe it is a simple procedure to shut the defibrillator off with an external magnet.

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I would discuss the benefits of a pacemaker with his providers first. I may be in the minority but I say pursue the pacemaker.

Having a low HR can make the person tired, scared to stand up as he may get dizzy, etc. I am of course not familiar with your dad’s history. But having a pacemaker may indeed improve some quality of life.

I would look into pacemaker insertion. Yes it’s tricky in the beginning but hopefully with family support he will get through it.

I am aware he signed a DNR. This is a tough decision but if you feel the procedure is just too much or the risks involved are too high.

Pacemakers fire electricity to help the heart beat as it should, but a pacemaker in and of itself will not make a dying heart muscle beat. If someone with a pacemaker has a heart attack, the pacemaker won’t keep the heart going. If the heart muscle is dead it will not “pick up” the paced beat and continue beating because the conduction area in the heart (SA node) is dead so if this is a concern of yours speak to your father’s providers.

Good luck in your decision.

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My husband is 61 and had a pacemaker installed on July 4th. It's not done "outpatient" at all, and for him, at least, required a 3 day hospital stay. Surgery is performed by an electrocardiologist, lasts approx 2 hrs and is done under local anesthesia and an iv sedative. A 2" incision is made below the shoulder where the bra strap lies, on the non dominant hand side of the body. A silver dollar sized unit is placed just under the skin at that point, with wires leading directly into the heart. Possible complications include heart or lung puncture during the surgery, with death being a rarity. The battery lasts 14 years. Dissolvable stitches are sewn at the site and tape is placed over the incision which must remain for 2 weeks when it will be removed at the follow up pacer clinic appointment. No shower for 1 week, no driving or lifting affected arm over the heart for 2 weeks, no lifting over 10 lbs for 2 weeks. There is soreness at the site but not a lot of real pain. Possible complications include infection of the incision. The PM has a unit which is plugged in at home and transmits info directly to the pacer clinic for monitoring. When the unit triggers, my husband feels what he calls anxiety, or a bit of heart racing for about 15 seconds. Everyone has a different degree of sensitivity in reaction to the unit triggering, with some feeling nothing at all. At hospice time, there can be issues with passing unless the unit is turned off. My cousin had to use a magnet when her dad was passing, and had a truly horrifying story to share on the subject. Google hospice and pacemakers for more details.
There are many follow up appointments after the surgery to consider as well. If my mother with dementia at 92 were to be faced with getting one, I'd refuse. Prolonging her life when the quality of it is shot seems like a silly option at this point. All we do is go back and forth to ERs, hospitals and rehab as it is, nevermind adding ANOTHER issue into the mess. Again today she asked Why Am I Here ?after taking yet ANOTHER fall this week. She's already in a wheelchair and suffering several other chronic health issues in addition to dementia and living in memory care. There are people here who will insist that EVERY medical intervention should DEFINITELY be taken to prolong your mother's life for even ONE more day. I question the compassion of that logic and challenge the notion of it having anything to do with love, but being a fear based reaction instead. Sometimes love means knowing when to let our parents rest in peace and THAT is a true act of love. And faith prevents us from making fear based decisions because we know that life, in reality, is eternal.
Wishing you good luck and Godspeed with your decision, my friend. All the best

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Whoa. I think we have to take into consideration that each area of the country, each medical center and even between practitioners the care guidelines may differ and may vary as well based on how the patient is doing...my dad, who got one at age 100 (and by the way, they were developed in Canada and July 1 is Canada Day!) had minimal follow up appts and did very well. At one appt the great pacemaker nurses were a little concerned about some redness at the site and they took a picture to share with the surgeon to decide what to do (at his age, as a precaution, they put him on some antibiotic, but he was fine). Also be aware that with the remote monitoring units, there had been a concern about "hacking" but I think that has all been resolved. One does not have to use that...but it alleviates more frequent trips to MD appts, if that is what they want. Also there are as mentioned, differences between patients...

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Read Katy Butler's "Knocking on Heaven's Door"--she talks about having to face this decision--and her latest "The Art of Dying Well" (SUCH a great book). Based on what you have told us, I agree with all the comments that this intervention would both not honor your dad's wishes about his life and care, nor would it be in his best interest. If his POA/your mom is only saying "yes" because it's "what the doctor is suggesting", ask the doctor if you could get a referral to palliative care to help decide if it is really best for him. Then she can hear a doctor talk about the other side of the coin, hear them point out the medical reasons for why it would not be good for him (or any of you).

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YES! Read that book! I read it a few years ago and it influenced our attitude for our wishes towards our older years. My husband's doctor suggested a pacemaker, he has early onset of vascular dementia, he has a brain aneurysm, and many other health issues. He said no. But that is a personal decision.
Will it make him more comfortable? Will it change his eventual outcome? How will it effect his Quality of Life? He has next to no quality now and doesn't wish to let his heart keep beating if it wants to quit.

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I would think no. Your dad was pretty clear about DNR. There is no cure for dementia, so there is no hope of getting better. I just filled out the DNR, etc. paperwork for my husband with early onset. Not an easy thing, but Having him bedridden and turned every few hours with no understanding doesn’t seem like a quality of life that should continue just because there is medical technology.
Years ago my 97 year old great uncle (no dementia) fell because his heart rate dropped. Although he had a DNR, the doctor talked us into a pace maker. Unfortunately because my uncle had broken his hip in the fall, he went from hospital to rehab to nursing home. He had been living at home and was never going to be able to go back. His final months were not what he would have wished for and I wish we had said no to the pacemaker and followed God’s plan for him.

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Definitely not. The anaesthetic will most likely make his Dementia much worse with probable dilerium. I think it’s very wrong and can’t believe it has been suggested.
Your father made it very clear what he wants. Time to speak to doctors about your mother’s alcoholism and just kick up a stink. Time for an argument with your mother Do you think she knows this will hasten his end? Can you go to the home administrator? Just keep making as much noise as possible till they give it up

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I'm beginning to sense that the amount of anesthetic used is minimal for those up in years...and that in itself, to me, may be reason enough to say no because the pain may be felt as it was by my dad.

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Pacemaker for dementia Dad. Any thoughts?

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