So yesterday, Mom, almost 91, CHF, one year post stroke, vascular dementia, some aphasia, broken hip repaired 6 months ago, fell in NH. She thinks she fell out of her wheelchair while trying to stand up with her walker, thinks she didn't put one of the brakes on, no way to tell, no one witnessed fall. She vomits after she falls and NH calls 911; EMTs find she's got a rather low heart rate and decide to transport her to hospital. Turns out she dehydrated; heart rate drops to 37 and stays there. We discover today she has "total heart block"; upper and lower chambers are no longer communicating with each other. There seem to be two choices; leave her be, which means letting nature take its course and death is inevitable, or putting in a temporary pacemaker today, replaced by a permanent one on Monday. As we are talking with the doctor, test results indicate that her kidneys are starting to shut down due to lack of perfusion due to heart problem. Brother and I have a long talk (he is POA). We present situation to Mom--your heart is having problems beating on its own; they want to put in a pacemaker; would you like them to do that? There is some risk, but if we don't do it, the prognosis is not good. She says, she wants the pacemaker. We explain that it means two days in ICU, probably restrained at night so she doesn't pull out the lead. She closes her eyes and thinks and opens them and says "yes". We probe, she gets out, yes, I want it. So, Mom has a pacemaker! I will let you know how the permanent placement goes; what I'm most worried about right now is mom developing ICU psychosis--from isolation, from being restrained, being in an unfamiliar place. If anyone has other experiences or advice to give, please let me know. Also, in talking to the doctor, I found out that if dementia worsens, etc, we can turn pacemaker off. That really tipped the decision for me.
When the defibrillator activates it is very uncomfortable for the patient and they can loose consciousness. At the time of death if it has not been previously deactivated it will go off multiple times causing much distress to loved ones present.
Think very carefully before agreeing to have one put in an elder whose quality of life is already compromised.
As far as Edna's question is concerned there is little she can do except strap the arm to his body which no doubt would agitate him badly. The Dr caould try sedation but Edna may not like the effects of that on her husband. Just sending you hugs Edna you are doing the best you can and that is always good enough.
I've checked several medical sites and none mention keeping one's arms below a certain level. They do say no extreme arm movements, like swimming or golf for several weeks. Many recommend a sling for 24 hours, but that would usually be while they are recovering in the hospital.
Please understand that I am NOT trying to give you medical advice. Follow the doctor's orders unless the doctor tells you to do otherwise! But I do suggest contacting the doctor who gave those instructions. What are the benefits of keeping his arms down? What are the risks if he doesn't? Explain that the dementia prevents him from complying.
How long is he to not raise his arm? If it is just one more day, it might take you that long to contact the doctor! But if it is supposed to be observed several more days, I would definitely contact the clinic that will be monitor the pacemaker from now on, or the office of the doctor who put the pacemaker in.
His Vascular Dementia does not allow him to comply. I have tried everything: sling (he takes it off and hides it when in another room)
safety pinning his sleeve to his shirt (just forcefully raises arm) t shirt with left arm inside shirt instead of sleeve (slides t shirt out of the way), etc.
But as I understand it, a pacemaker does not prolong life. By keeping the heart rate from varying widely it contributes to the quality of life.
Once my husband displayed dementia he was very serious about no extraordinary measures to prevent death or prolong life. I supported his decisions. Twice in the 10 years of his dementia a feeding tube was recommended. Twice he turned it down. When his pacemaker battery needed replacing he insisted on the defibrillator feature being turned off (because that does attempt a resuscitation). He refused to follow special diets, preferring to take his chances with the foods he loved. I asked my cardiologist if the statins hubby was taking were to prolong life. He said there is also evidence they help prevent strokes, which would be a quality of life issue. Hubby kept taking those meds until hospice. And yet, my husband kept his pacemaker in. That made him more comfortable day-to-day. His death was "natural" from the complications of dementia. The pacemaker did nothing to prolong that or change anything about it.
Be careful not to turn down things that do contribute to quality of life. That is not the same thing as prolonging life.
Sitting in Intensive care with him, at 2 in the morning, I started thinking about how a pacemaker would prolong his life.....but for what? For me and my sister, yes...but what about him? His health directive said "do not artificially prolong my life" ....I researched and read and article after article said "Don't put a pacemaker in a dementia patient. Their heart will outlive their happiness." The whole time my dad was in the hospital with a temporary pacemaker he was super agitated, rather than his peaceful self. My sister and I agonized over the decision. In a lucid moment, I explained it all to my dad and he agreed against it. When we told the doctor he was LIVID with us. It has been two years since, my dad turns 90 in Oct. His heart rate fluctuates dramatically but he is still alive and sweet as can be. We wonder sometimes if the pacemaker would have helped his dementia but I have not read or seen any evidence that it would have. However, I am not sure any of us could have survived the surgery and the following level of care, discomfort.
When my mom got ALS we put in a feeding tube to keep her alive. All that did was prolong her life so that she had to endure becoming completely paralyzed. It taught me clearly that prolonging life is not always the best decision.
Looking back, mom certainly appeared to have the capacity to say yes or no at the time of the surgery, so it was the right thing to ask her. And the delusions about leprosy was handled with an increase in psych meds.
We are considering a pacemaker and thought it might improve his brain function. Now, with sincere thanks to you, I'm having second thoughts about it. Why live longer if you've lost your mind? So, I'm assuming that had it been left up to you, that you would have opted out of the pacemaker?
At the time, my poa brother allowed mom to make the choice. At that time, she still appeared to have capacity. She is now hospice-eligible, although we have not elected to go that route. She is on palliative care with a "do not transport" order.
The mom I grew up with would be horrified at her own mental and physical state, I think. But all three kids have medical poa, so it has to be a unified decision, and I'm not willing to fight with my brother.
I don't know if this helps or not. Dementia is agonizing, no matter what.
You really need to talk this through with your mother's cardiologist, and nail him/her down as far as possible on these questions:
what is the pacemaker being inserted to treat, and how will it work?
what benefits can your mother expect from it?
what are the drawbacks?
what is your mother's prognosis if you decide a) for it and b) against it?
I'm not saying "for heaven's sake don't do it!" If your mother's vascular dementia is not yet severe, and the pacemaker can reasonably be expected to improve her heart function significantly, then it might well be worthwhile. But make that cardiologist look you in the eye and give you all the facts, not just gung-ho (not to mention expensive) optimism.
This is an incredibly hard decision. And for what it's worth (not much), if I were making it again? Do you know, I still don't know, but I'd probably give it the go-ahead.
1. Can you and/or a family member arrange to spend more time with her? She'll likely sleep when you're gone as visiting would tire her out, and she'll need more sleep post-surgery anyway. But at least for those periods of time she won't be alone.
2. Bring a CD player or radio, get headphones, adjust the volume and turn on a classical or favorite radio station, or play a favorite CD. She'll fall asleep listening to music and be more relaxed. It might eliminate the post-surgical and ICU effects about which you're concerned.
I read sometime ago that the Israelis were using music as a means to bring people out of surgery in a gentle way. We've used music therapy a lot in the past and have seen the positive results.
3. Bring something from home that can help orient her, whether it's a family photo, old stuffed toy, or something else of which she was fond. It'll help make a connection with something familiar.
I think wanting to watch the Derby is just hilarious! She sounds like a really strong woman.
And for the record, I think you did the right thing.