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I posted earlier about taking my dad (mild dementia) to a geriatric doctor. They found his heart rate to be extremely slow.. under 40 and made an appointment with a cardiologist which we went to today. He said he needed a pacemaker or he would possibly go into cardiac arrest within the next couple of weeks. We made an appointment for him tomorrow to get a pacemaker.

He has decided that he doesn't want it ..and said he is ready to go. I do understand his decision. His quality of life is still pretty good tho and he would feel much better with his pacemaker as he would have more energy..etc. ..but i do understand that he may not want to continue with dementia.

I'ts hard.. and I'm really sad... Basically he is going to most likely pass away in a few weeks..or maybe months of cardiac arrest.. i can't stop crying.

I'm really not sure he undertands the magnitude of it.. i hope he does..

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My 95 year old mother in law just got a pacemaker a few days ago. She has been living with us for a few months and we were shocked to discover she had dementia when she came here. In three months she progressively got worse and developed fatigue and weakness. We couldn't figure out what was causing it all except her age. She developed dizzy spells and had a hard time moving for anything. When we took her for her doctor's appointment she had a dizzy spell and the doctor saw her pulse was below 40 and sent her to the emergency room. They made it sound like if she didn't get the pacemaker she would be dead in days. My mother in law is DNR and my husband her POA and they wanted us to make the decision but after they stabilized her heart rate she perked up and was fairly lucid. We asked her what she wanted to do and at first she refused the pacemaker but when it was explained that it would just make her feel better and not prolong life unnecessarily she agree to do it. Another important factor in the decision was that she would just be made comfortable and not "put under" for the operation that lasted about 20 minutes. She also had a temporary pacemaker inserted in a vein in her groin the day she got to the hospital to keep her heart going till she got the permanent one. She came out of that flirting with the male nurse.

She is now in a rehab facility to get some strength back before she comes home. The most amazing thing in all this is that my mother in law went from a person we did not recognize back to the woman we knew. My husband is so happy to have his mom back. It may be early and we could be overly optimistic but she was getting his jokes and making her own, recognizing family and talking about things she could not remember earlier this week. She was even laughing. This may not seem like much but she was totally out of it before the pacemaker was placed. In her situation (so far) it has been the best decision. We have no way of knowing how rehab will go but as far as her mind is concerned this will have improved her quality of life. This is a very tough decision for anyone to make and we would have respected her decision either way. You are lucky to have a parent that can still make this decision on their own. My husband and I were faced with an emergency room staff pushing us for a snap decision and we felt like if we said no we would be executing her.She has been through many hospitalizations, intubation, feeding tubes etc. and we were leary of putting her through more at 95 but she tolerated the procedure very well. You just never know.

I do want to mention that she has told us this was her last operation. No more hospitals and curative care. Our next step if something else happens will be Hospice. Good luck to anyone else who has to make this difficult decision for your loved one.
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Yes, no matter how difficult it becomes, just remember that you are honoring your Dad's wishes...and THAT in the end, will help you have peace about all of it later on...the others, while perhaps well intentioned, are creating a lot of hurt and extra pain that you should not have to be going through...I don't know why it is this way, but these situations do seem to bring about the worst in way too many people and that "know it all " attitude...especially frustrating when those same people have not even been there.....praying.
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Also, we had Hospice at the time and their social worker intervened as well on Mama's behalf and that was all the backup we needed.
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Oh this breaks my heart for you and your Dad to keep having to address this issue...I have not been on here for a couple of days but sounds like a lot of meddling folks are giving their two cents now??? When my Dad was dying, and we had already been informed there was nothing that could be done except to do things that would only prolong his sufferiing, he made Mama and me vow we would never put him back in the hospital...of course we promised him...THEN...AFTER all the years of begging the sibling to spend time with him, get your peace with him, spend the time now while he can enjoy it with you, but he did not heed anything I said...THEN at the end, here he came, WITH his wife, AND his mother in law and they physically tried to take my Dad to the hospital...it was awful..in my Mama's and Daddy's own home, we had to endure the ugliness of people who had pretty much lived their own lives selfishly all those years and now as the time was waning and nothing could be done, here they came to try to keep him hanging on. My Mama is a very quiet and gentle soul, but it is the first time in my life I ever saw her firmly plant her feet and tell my sister in law to put the phone down, this was her home and Daddy was going nowhere...My sister in law, on this same night, threatened to kick my A$$ and by then I had had it..we were outside and I told her to bring it on, that I had put up with their mess for too long and I was done....my brother told me to shut up...I still hurt from all the ugliness, but my Dad was able to stay home, where he wanted to be, without further intervention and my brother later admitted we had done the right thing...I think when folks have chosen to live their lives and not spent the time with the loved ones and towards the end they seem to feel that by coming in and professing all this concern will somehow keep them hanging on...It won't...it is selfish, imo for people, in particular ones who have not been there for the most part of the time, to come in and try to except their authority...I continue to believe you are doing the right thing...I don't thing anyone can do anything to you for this...it is your fathers wishes to not have the surgery...I am glad we remained firm...it was not pleasant, but my Dad went peacefully, surrounded by those who loved him most....continued prayers for you all.
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Katie how on earth have all these people found out about Dad's pacemaker decision?
Getting the advice of an attorney experienced in elder law is a sensible idea.
As long as dad is competent to make his own decisions I don't think there is anything anyone can do. It is his decision end of story. Unless he puts his signature on a permission form no docter will do the proceedure. If he is not competent as decided by two drs it will fall to Mom to give that permission. definitely there should be a POA for both medical and financial drawn up as they are becoming older and the obvious person would be you but that is their choice.
Be rest assured that Mom and Dad have made a decision they they are comfortable with at this time and that must be honored.
On the other hand having a pacemaker is really no big deal and is not the same as a defibrilator which would be a more serious decision because it actually shocks the heart if it stops or becomes seriously irregualr and can be life saving or should I say life extending. In the end it can not prevent death if the heart is seriously weakened.
I see no reason why having a pacemaker should make Dad's death horrible. he may go into heart failure which won't be pleasant but I would not describe it as "horrible" and there is much that can be done to keep him comfortable.
Have you considered having hospice involved in his care? Stop listening to people who do not know what they are talking about. Blessings.
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KatieKay, my father has a pacemaker and the only way I'm aware of to turn it off is electronically through the monitoring equipment used by our electrophysiologist's nurse practitioner.

As Glad asks, does your father have a medical power of attorney in place so that you can be responsible for medical decisions and keep the possible interfering uncle out of the picture? What do you think he might do?

If you mentioned this sometime before, I apologize; sometimes these threads get so long that it becomes really time consuming to reread all the posts.

It's so unfortunate that at this difficult time the family isn't coming together to support what your father wants. It is, after all, his life, and unless he communicates what he's feeling emotionally and physically, and someone can vicariously step into his body, it should be his decision. I respect you for honoring that.
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Katie,
You may want to ask an attorney about whether uncle could do something. You can do that on the AVVO. You should receive several responses at no charge. Remind me, does dad have a living will, and a DNR? Who holds POA? Being the POA is a difficult job when these things happen and is definitely a job for a strong person. You and Mom are doing what your dad wants, it is a difficult decision for him, and will be harder for you to carry out. Be strong together you and mom with the help of hospice will make it through.
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I know honoring my dads wishes to not have a pacemaker is the right thing...even now. I just dont know if we can make it through all this turmoil...especially from people who have no stake in his life and will not be around to pick up the pieces or to see my dad have to spend the rest of his days in and out of drs and hospitals...that will fall to me and mom.

I am so afraid my uncle is planning something...the one that called my dad. Can he legally do anything to us? Anyone know?

I just dont see how we are going to make it...how will we honor his wishes without looking like we are responsible when he dies?

One aunt is writing to mom about how easy it is to turn off a pacemaker when you want to..and that my dad will linger and have an awful death...my mom and dad were so peaceful with their decision at one time...but now i just dont know.

This all from people who have not even hardly seen or spoken to my dad in years...suddenly the seem to care..and know more then his immediate family.

I do think one of them got ahold of my sister...possibly threatened her..she will no longer communicate with me. For all i know she is now siding with them.

What a nightmare this is becomming..
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Katie sister is now having issues? Ask the hospice social worker to send her an email. Or call her, something. The SW may tell her these conversations are about reminiscing about good times throughout your lives, not about dad dying. But, some people just are not able to process the dying process. Auntie dearests have probably called sis. Others are calling dad to see if it is all true. This is so much for you to have to deal with in addition to trying to keep your dad comfortable. This has to be very difficult.

Best wishes, ask hospice SW to assist with the difficult family members. Tell SW exactly what you want from family and that if they cannot be supportive to just leave you, dad and mom alone. You do not need their added stress.
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Katiekay, big hug. What you are all up against is a heart-breaking situation with no right answers in it and no way of knowing anything for certain. I'm so sorry for what you're all going through. Just stick by your dad. God bless you x
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Update..
My sister who has been very supportive up till yesterday and was going to come next friday so we could all be together for fathers day just told me she is putting her trip off..and that she can no longer discuss my dad dying. She is the one that has been really supportive. Her support suddenly ended and wont answer calls or texts.

My brother is comming today and still there for supporting his wishes.

My uncle who hasnt spoken to my dad in years called..im sure it was to chevk out if we were lying about him having dementia. Mom says ..he was able to talk to my uncle like the old times. So i guess they now thimk he does not have dementia. For 10 minutes he can easily hide it....but not for any extended period.

Anyway i see how hard this is. I see now how even if you want to go peacefully...its a battle.

Thank you all for your support. You guys understand what our family and my dad is really up against.
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Katie my dad died from a massive heart attack at xmas his partner never told us how ill he was so you can imagine the anger we feel but later it got worse that he refused a bypass which could have given him a few more years but at 81 he did not want this, although im angry i didnt know and maybe we could have spoken to him about this BUT now looking at mum and other people who have seen thier parents suffer from cancer or otherr illnesses Im glad he went quick you can advise him because you want him around longer but respects his wishes and like another post says enjoy this time as i wish id spent more time with dad and would have had we have known how ill he was. Sometimes i think its a blessing when we can be there and get to say goodbye when it happens so fast its devastating as there are so many regrets lucky the last phonecall i had with dad the last thing i said was "i love you too" and i will always treasure that!

Hugs as this is the hardest thing to let them be and let them go. I often think what if mum had to have an operation with her "dementia" i think i would not want it and i know she would refuse too. Its only natural to want them around forever but sometimes we need to think of what they would like i know if i had the chance to talk to my dad it wouldnt have made a difference and id have to have respected that.
Will light a candle for you!
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You have made a wise decision in repecting Dad's wishes Katie. A pacemaker may regulate his heart rate but will not cure whatever is causing it. The same goes for a defibrillator. If his heart stops it will go off shocking him numerous times. I would not put anyone through that if they did not have hope of continuing a healthy life. Support mom and tell her the aunts have no idea of dad's real condition so she should not let them upset her. Hospice is also an excellent idea and all of you will get much support from them
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Interesting. Maybe they have the start of dementia. In the news recently I have seen that they are experimenting with a device similar to a pacemaker to implant in brain that helps keep blood flowing to brain. There is also research being conducted on the differences in how the brain processes glucose between those with and without dementia.
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The aunts seem to think we are possibly railroading him into this. they think s pacemaker will cure his dementia and kidneys.

these same aunts have not even seen mu dad in years nor will they be around in the aftermath when the pacemaker does not work its magic.
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Katie-
There will always be situations like with your aunts. These sorts of things tend to bring out the know-it-all in everybody, to say nothing of the dysfunction.
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Update...dad was approved for hospice. Mom talked to him today..about the whole thing..pacemaker, hospice..etc. He seemed relieved when she told him we were all supportive of his decision. He actually thought we were mad at him for denying the pacemaker. Looking back now i am so glad he said no to the pacemaker..there is no telling what the situation would be if he got it.

My moms sisters are STILL a problem...even after i sent an email pleading them to respect their decision to be nothing but loving and supportive. They say...bla bla...want to be supportive BUT here is what I would do...hope this doesn't hurt you...OMG ...they ARE hurting my mom..i am really shocked by their reaction to this.
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My mother in law had a pacemaker/defibrillator implanted about 5 yrs ago. Now she has dementia, as evidenced by the fact that she hasn't paid property taxes in 4 yrs despite having the money to do so, hasn't paid utilities, etc. My husband is up there now getting things taken care of and getting DPOA. I'm wondering now if that defibrillator was such a good idea, or if she would have preferred to, as she used to put it, "shuffle off to my reward". She's 91 now.
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This is such a difficult decision I know, but katie I do think you are doing the right thing. Respect his wishes, make him as comfortable and happy as possible and let him leave the way he wants. I often think of this issue with my Mama. Her overall "health" is pretty good. We have excellent days where she is laughing and talking and happy and I love those days...then there are days where she sleeps the entire day, seems so sad when she awakens and even sadder when she is looking around and does not seem to know where she is, who I am, what is going on and where are all the folks she loves (most of them passed already) anyway, I often question myself re the issue of respecting her wishes. I want to believe I will do it....if she suddenly stopped breathing and could not be awakened simply by touching her....would I be strong enough to let her go...I believe I will, and pray I would. I know that my Mama did not want to linger in a confused and disabled state. She is totally bedfast...cannot lift her arms without assistance, is completely incontinent and I know that we always talked about this very thing and she made me promise I would not keep her going beyond a normal comfortable life. I am doing everything I can to keep her happy and make sure she knows how much I love her...how loved she is by all, and I know she is ready when that time arises....you are doing the right thing. prayers and hugs for you all during this very difficult time...
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Respecting your father's wishes is doing the right thing.

My husband had both a pacemaker and defibrillator for several years before he developed dementia. He was very adamant about DNR after the dementia started, and he decided he wanted the defibrillator removed. We made an appointment with his cardiologist, who was shocked at the request. He had never had anyone wanting it out before. He told me we should think about it some more. I replied that he had been thinking about it for months. Then he faced my husband, both sitting on stools and on the same level, looked into his eyes, and said, "If as we are talking your heart stopped and you could get a shock that would start it again and then we could continue our conversation, wouldn't you want that shock?" And my husband replied, "No. I would rather die of a heart attack, like all my brothers, than to linger with dementia."

The doctor was surprised -- shocked might not be too strong a word -- but said he would not subject Hubby to a surgical procedure to do this, but that when the batteries were to be changed, he would remove the defibrillator . (I think he may have had to change the pacemaker at that time.) Hubby was OK with the pacemaker, as that device made his life more comfortable. He was not OK with a device that would potentially prolong his life.

The "procedure" lasted way longer than expected and I was getting worried. The doctor finally came out and said everything was OK but they'd keep him overnight for observations. And then he said, "I been thinking about this a lot. You made the right decision."

This situation is different than the one your father faces. Hubby already had the implanted device, and it was not the pacemaker he wanted removed. But I did believe he was competent to make his own decision and I would have supported whatever he wanted. That can be extremely hard!!

Hugs to your entire family. I hope that you can make the most of the time left to you.
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You are showing hive and support you are doing the right thing, 82' the effect of anesthesia, the present dementia and kidney disease, are all factors. I would support him not having the surgery.
God bless you and your family in this difficult time.
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CountryMouse, the anesthesia wasn't a general; I can't recall now what it's called. I used to remember all these details but so much has happened over the years that I just don't have the recall any more.

I do remember Mom complaining that they "have me all tied up!" and wiggling out of her sling after she got home.
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Countrymouse,

My dad has dementia. He is terrified of being in a nursing home and wants to die at home with his "boots on" ...so to speak.

As his dementia progresses, a nursing home is almost a certainty..so i believe this could have played into his decision.

He would not even know what procedure he had or why that thing was under his skin the next day...or why he is even in pain.
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What kind of anaesthesia, GA? I know my mother definitely wasn't given a general; I'm not completely sure about the sedation. She had a 3-lead pacemaker put in in 2012. And actually, yes you're right, they did keep her in overnight now I think about it - but the surgery itself took less than an hour not including pre-op preparations. The battery is the chunkiest bit of the whole thing, and is the only bit that needs a significant incision, but even that is skin deep - she'll have to have hers replaced early, after only 3 years instead of 5 because for some reason it's wearing out quicker than usual. The biggest drawback has been mother's not being able to have an MRI since, and she gets irritated with the very slight lump where the battery is, just under her collarbone. Can't say it turned her into a spring lamb, exactly; but then who knows what state she'd be in without it by now.

Ba8alou, why is that, do you know?
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Just a comment on pacemakers, from experience with my father.

Implantation is done as outpatient surgery, but for some patients an overnight stay is recommended by the physician to ensure there's no bleeding and that the pacer is correctly positioned.

My mother had to keep her right arm raised all night long so that the wires could remain in position; she even had to wear a sling.

Anesthesia is definitely used; this is an invasive procedure.

As to removal, my father's was removed but that occurred when the battery was failing and he needed a new one.

Hope this helps clarify some of the pacer issues.
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Cm, I dont think you're allowed to remove a pacemaker in the u.s. I could be wrong.
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Katiekay, normally I'd be the first to agree that when an elder person says he's had enough, he should know.

But the thing is, the pacemaker could make him feel so much better. He won't feel nearly so worn out when his heart rate is around normal.

I guess it isn't the minor operation that's bothering him, then, but the thought of slogging on and getting steadily worsening dementia?

Very, very difficult. There are so many unknown factors to consider.

I think, if I were you, I'd ask him not to cancel the operation, but to talk it over in detail with his geriatrician or his older age psychiatrist, whichever is advising him and the family about his dementia. It's a question of how many years, possibly, of good quality of life it might buy him, and that might be quite a few.

And, as Pam S pointed out, if it's not helping him it can always be removed. These procedures are surgical, but they're day case only, very minor. Local anaesthetic only, I'm not sure they even bother with any sedation to speak of.

I hate to think I'm making this harder for you, but I don't think I'd give up on him just yet. My best wishes to all of you.
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Katie-
I know this is a difficult decision for you. But, now the kidneys as well, would be just too much for him. Google "effects of anesthesia on brains with dementia". Find a good article and send that to aunts as well, it might help them to understand.
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Thanks everyone for your responses.

Update..i got my dads bloodwork back and his kidneys are also failing. The dr. Office called and wants us to go to a kidney dr. Im thinking we will just skip all the drs from here on out and try to make him comfortable.

We have a call with someone my sister knows who works with hospice to go over what hospice does and how to set that up.

My moms sisters are not being very understanding and questioning our decisions. Me, my brother, and sister are composing an email to them to basically say to respect his wishes and do not question them.

My dad is at home and blissfully happy...having a few goodies and enjoying a visit from his grand daughter.

This makes me think about my own end of life wishes..
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IMO Please know I am not judging you..

My Mom had a pacemaker inserted about 3 years ago she has afib. Her cardiologist says it's going over 90% of the time.. It will probably need to be replaced earlier than most..Her dementia is between stage 5-6 on Alz. scale. Her heart may be beating but her brain isn't.. As her POA and she has a Living Will I will not sign off on a battery replacement. She is 92 and she's lived a long life. She entrusted me with making these decisions for her when she was of sound mind and I have to to see her wishes are met..
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