I know no one can answer this question for anyone else but I am trying to process this, yet feel I’m missing some pieces of the puzzle.
The condensed version: My DH has Alzheimer’s with possible vascular components and was recently moved to memory care after only a month in assisted living. He was never able to adjust in AL and his dementia behaviors were rapidly escalating. He is on oral calming medications but is extremely confused and often agitated and fearful.
He is 79 years old and has heart disease and a pacemaker/defibrillator. At his last cardiology appointment we were told his pacemaker had been occasionally pacing for him for the first time since implantation.
His first night in MC he collapsed and hit his head. EMTs were called, wound was deemed superficial, vitals were normal, responses were surprisingly appropriate. EMTs did not transport him.
The next afternoon I received a call from his cardiologist that his defibrillator had fired the night before. He had apparently had a ‘fatal’ arrhythmia that caused his collapse and had been shocked back into rhythm.
I took him to the ED as requested, and after 11 nightmarish hours without medication he was admitted.
The cardiologist who saw him explained the situation to me, offering a medication that could help the arrhythmia but has severe long term side effects. He also explained that with severe dementia there was also the option of turning off the pacemaker. He was scheduled for head CT, blood work and an echocardiogram so I opted to hold off on any decision until seeing the results.
Ct showed a small but inconsequential brain bleed. Echo appeared to show no significant change in heart function since his last one a few months ago. Labs were unremarkable. I agreed to start the medication for arrhythmia with the understanding that it takes a while for it to start working. Today I will be taking DH back to MC.
MY dilemma: if I decide to turn off the pacemaker/defibrillator, am I making a decision about life and death (which I am uncomfortable with) or about quality of life and ease of death? The cardiologist told me that death from arrhythmia would be painless and swift. The fact that the arrhythmia medication may have serious long term side effects, possibly damaging liver, thyroid, eyes, etc. has to be factored in as well.
In other words, IF this happens again, will the defibrillator just be shocking him back into a poor quality life that is doomed to get worse and is that really my decision to make? I THINK, at this moment anyway, the answer to that is yes and I think I could live with the decision to turn it off - DH does have an Advanced Directive to support that, as a defibrillator is resuscitative.
But in the wee hours, I keep thinking about that old story about the man clinging to the life preserver in the middle of the ocean, praying for God to save him. A boat and then a helicopter come to his rescue but he refuses them insisting God will save him. He drowns and when he gets to heaven he asks God why he let him drown. God says, “I sent you a boat and a helicopter!”
So, is the defibrillator a boat or a helicopter sent by God? What about the medicine?
It's really too bad he was shocked back to life. I don't say this flipantly. My perfectly healthy 62-yr old, very fit and newly retired cousin had his first and last aFib event. They found him sitting on his couch with a glass of beer in his hand, watching tv. It was fast and painless. We should all go out this way.
Did he decide to have the pacemaker put in, or did you decide that for him? Is this why this feels like such an agonizing decision?
At 79, why are you worried about long-term side effects? Do you think being shocked back to life and then falling and hitting your head is a "better" way to die as long as you didn't make any decision to alter things? In case my tone isn't coming through, I'm not shaming you but just putting forth rhetorical questions you need to ponder right now. Emotions can cloud our reason and logic. You need to step back and ask yourself these questions.
If I were in your shoes I personally would not use the defibrillator and maybe not even the meds for his aFib. Just for his anxiety, depression, agitation.
I wish you peace in your heart as you come to a conclusion.
This is not making a decision about life and death. In the case of V-fib death will come. It is a decision about HEROIC MEASURES and an implanted defibrillator is just that. He is being shocked back.
Whatever your decision, when and if your hubby is on Hospice and IS passing, expected to pass it is CRUCIAL this device be disabled or it will shock him continuously as he attempts to die. It is not something you want to have happen.
I would highly recommend that this V-fib portion of this implanted device be disabled. It would be my choice for myself and for anyone I loved.
Best of luck to you.
I had read a post here a couple months ago about this very choice and knew the day would come for me to make it, but in that case it was a deathbed decision - the loved one was actively and imminently dying of other causes so that was the scenario I had in my mind.
DH is back in the facility as of yesterday afternoon. As the hospitalist explained to me this may not happen again to him or it may happen today. But now that it has, I know what I have to do and when.
Geaton, I am not in any way offended by what you said - I can’t be offended by the truth, and I, too, wish I had had a better understanding of the mechanics and had been knowledgeable enough to act sooner. The device implantation pre-dated DH’s Alzheimer’s and was a mutual decision between DH and his cardiologist so although I agree it would probably have been better if he didn’t have it, it was already ‘spilt milk’.
So, the moral of the story is, I have once again wasted precious time agonizing over choices that are FALSE to begin with. But nobody can know everything all the time, we can only do our best to learn and then apply our knowledge. Thank you all again for your advice and I hope it, and my experience these last few days, will help others going through this.
Thanks for your detailed update! Updates are always so helpful...
Blessings!