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..
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.
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.
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.
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.
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..
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.
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.
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!
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.
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.
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.
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.
God bless you and your family in this difficult time.
I do remember Mom complaining that they "have me all tied up!" and wiggling out of her sling after she got home.
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.
Ba8alou, why is that, do you know?
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.
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.
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.
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..
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..