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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!.....

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If your mother is technically or otherwise the POA you do not have a vote here. She is the one the doctor will go to and she will make the choice as your father is no longer able to.
I am a nurse. I would vote for honoring your father's wish. I would not place the pacemaker. I would be doing palliative care only now.
That's where I stand, but when someone ELSE has the power of attorney it doesn't matter where you stand. I would gently advise Mom that Dad would not have wanted this, and that his wishes should be honored. But really, that is the only power you have.
Pacemakers are not benign procedures and there is then the side problems of getting them checked, adjusted, medications, etc. That said, the procedure usually goes well and they are more and more sophisticated with less and less problem of battery changes, etc. The problem with the elderly is that during that window of time waiting for the leads to kind of implant (think of a fishhook to the chamber) with scar tissue, a radical movement can displace the leads. In the elderly impaired this can happen more readily than with the young. I do not know the reason for pacer. I have Chronic Atrial Fib which my spouse has also. I chose no pacer and he chose yes. He is in fact on his third battery change in a few months and I am still beside him. His was placed for a slow heart beat, and more problematic thing. There are many different reasons to place them, just to tell you I am about 20 years out with chronic fib and an aspirin a day. So far still here. It's a spin of a wheel chance whether you do it or don't do it, as to which would give best quality of remaining life.
IMHO
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JoAnn29 Jul 2019
My friends leads became intangled causing her a lot of pain.
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I would ask the dr what goes into inserting a pacemaker. I think its an incision where a pocket in made under the muscle and there are leads. A battery is involved, how often is that changed? Not sure if its a pacemaker my friend has or a Defibulator but the checkup is to shock the thing which my friend sometimes passes out.

The incision is painful. I am not sure if I would put an elderly person thru this.
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AlvaDeer Jul 2019
The incision is made in the chest wall and the pacemaker sits either under skin or muscle. The leads lead into the chamber of the heart where they regulate the electrical stimulus for heartbeat. Much more complicated with an implanted debibrillator which acts to shock the heart into regular rhythm when it goes into the deadly arrhythmias of ventricular fib. Regular pacers if for the chamber involving atrial fib. The new pacers have batteries that typically last for 15 years, was up from the 5 years when I was in practice as a nurse, and they are much more sophisticated. You generally go home the same day unless the doctor wants the functioning checked for more time on the heart monitors and keeps you overnight. The incision is not terribly painful, but in case of initial placement of pacer and leads you are somewhat limited in arm movement so that the leads scar in place to hold them. I do not see the sense to prolong life in someone elderly if life has become for them somewhat a burden. If someone elderly wishes the surgery, however, it remains they own choice, and the choice of the POA if that person unable to make decision, which should be decided on the stated wishes of that person when well, as they are acting not on their OWN opinion, but on the wishes of the person they are acting for. Ideally, that is.
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The reason for the possible pacemaker is slow heartbeat. Dad would be very confused by the whole thing. He was very healthy up until the dementia kicked in and really only ever had two or three surgeries in his life.
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Oy. My mom, with post-stroke Vascular dementia had a pacemaker done; her heart rate was dropping and death was apparently imminent. I was one of 3 health care POAs with my brothers; one brother was financial POA.

POA bro decided to ask mom, who was still technically competent, if she wanted Pacemaker, explained procedure and that doing nothing would result in death. She paused; clearly thought about it and said "yes, I want to do it".

So we did it. Awful night in ICU with temp PM; they didn't give her her antianxiety meds; after surgery, she woke up and said "Kentucky Derby!!". (The Belmont was the race that was being run that afternoon; she was "in the ball park" shall we say.

She lived another 2 years. Was it the quality of life I would have wanted for her? No. But we asked her and she said yes.

Ask your dad, if he hasn't been declared incompetent. It's HIS decision.
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NYDaughterInLaw Jul 2019
I echo this! If there is a time of day that he's still lucid, video record him making his wishes for his medical care, pacemaker, and end of life care clear in front of witnesses. Some attorneys have paralegals to make house calls for exactly such situations. Get your father the help he needs ASAP.

If all else fails, and you have evidence of your mother's abuse of him, get emergency guardianship for your father. Your mother should not be in charge of him; she does not deserve that privilege.
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Upstream, are her finances affected if your dad passes away?

I think that your dad made his choice plain and clear when he was of sound mind.

Your mom, who knows what her motivation could be in having him go through a procedure that inserts wires into his heart, this is not an outpatient procedure. I can only think it is money.

At 81, with dementia, doing anything that will prolong the very existence he didn't want would be cruel in my opinion.

Try to discourage her from having this done.

Hugs! What an awful situation.
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Upstream

My experience appears to have been different from some of the other posts. I can think of three loved ones I’ve been up close and involved in when they got their own PM.

No problems at all.
One with Parkinson’s and dementia had hers replaced after going on hospice and all concerned are glad she did.

However, In your dad’s case, I would follow his wishes.

I would also try to get his POA from your mom. You might have missed your best (easiest) opportunity for that when you took his care over.

Regardless, I think I would impress upon her that if you have to file for guardianship of him that the funds to do that will come from his bank account.
She’s got quiet a record now you could mention that shows she isn’t really the best decision maker so a simple letter stating she will no longer be his POA would be the appropriate step for her to take. You shouldn’t have to deal with her over his care.
Your attorney could provide that document. Of course I wouldn’t go that far unless forced to.

I would think he was a drain on her finances unless he has a good LTC policy that’s paying for everything.

She has been so cruel to him (or is demented herself...can’t have it both ways), that I would want to protect my dad to live his life out as he saw fit.

This one is not hard to decide to me because you know what he wants.
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Is your dad's preference for quality of life written down anywhere? Does his POA form address the issue? You are absolutely right in wanting to carry out his wishes, and he's lucky to have you looking out for his interests. Have you discussed with your mom that your dad expressed to you a desire to avoid being bedridden? Does she believe you? Perhaps if you have a meeting with the medical team and your mother, you can explain to them the preferences that your dad expressed to you. At that point, the doctors should be on board with the idea that they shouldn't go forward with something he wouldn't want, and that could help convince your mom.
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His life, HIS WAY!! So sorry!
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I am the original poster: Thanks guys for the responses. Her personal finances are not materially affected either way, if he lives or dies. She has more money than she will ever spend. Both have excellent, comprehensive long-term care policies. His policy pays 100% of his care.

I don't know the first thing about pacemakers, so I feel that I need to be armed with real data to understand the short-term and long-term implications in having one placed in an 81-year old frail man with dementia. I fear for his future, and frankly mine too sometimes. Covering all bases with a dementia dad and a mentally ill mother is draining :(
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DILKimba Jul 2019
Upstream, my 86 yr old FIL with dementia just had one put in in January. It was an outpatient procedure and was very straightforward. We wrote notes and posted them all over his room and even on his mirror reminding him NOT to take the bandage off for 7 days. the staff at the AL were a great help. It has helped him a lot. It will not prolong his life, but has improved the quality by improving his sleep, and his oxygenation. Our biggest issue is getting him to leave the monitor that transmits data to hi doctor alone. We finally put it under his bed! Haha! Out of sight, out of mind!
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You have to look at the long term path ahead. He has expressed his desire not to have extraordinary care and the pacemaker will prolong life but as dementia progresses he will not even have the ability to rehabilitate (understanding how to exercise, etc.) Without support from others the road for you and him will be long and tedious. If mother and others are not willing/able to help, i'd suggest honoring HIS wishes. I have cared for my mother with progressing dementia for 7 years, now not able to walk independently, stay alone, do any care for herself and my back is breaking. take care of yourself too.
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Do not do it. This is the reason I have joined this board. My father had the beginnings of dementia. My mom insisted he get a pacemaker and 2 weeks after the surgery he does not know us, where he is, and has been so agitated that I am looking for someone to care for them. He did it for my mom and now their life is over unless a miracle happens.
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gdaughter Jul 2019
Look up SAITO. Although he has dementia if there is a program near you they might be able to regain some of the cognitive ability he had prior.
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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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gdaughter Jul 2019
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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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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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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Val3rie Jul 2019
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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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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gdaughter Jul 2019
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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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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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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gdaughter Jul 2019
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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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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gdaughter Jul 2019
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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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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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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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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gdaughter Jul 2019
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 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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My mother-in-law had a pacemaker and had it replaced. at age 96 and lived to another 2 years!
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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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my2cents Jul 2019
And don't forget to ask about surgery/anesthesia for a patient with dementia.
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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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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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gdaughter Jul 2019
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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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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A pacemaker will not cause his quality of life to decline.
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TXGirl82 Jul 2019
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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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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No to the pacemaker, and follow his wishes. You know what he wants, advocate for him and his wishes.
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cherokeegrrl54 Jul 2019
Absolutely right!!!
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