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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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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 13, 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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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 13, 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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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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TXGirl82 Jul 14, 2019
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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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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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 13, 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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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 13, 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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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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Reply to onlyoneoftwelve
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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 13, 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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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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Reply to Franklin2011
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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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