Dementia and pacemakers.

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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.

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I was just thinking that the one surefire way to make him wriggle his arm and shoulder around is to confine him in a way he isn't used to; so that unless he's in the habit of, say, reaching right up and back to scratch himself or something like that it's probably best left alone, isn't it? And yes Jeanne, hide his golf clubs!
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Is the dementia worse since the surgery?
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.
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Edna317, I don't remember my husband needing to limit his arm range of motion after his pacemaker was installed, but that was a long time ago -- things may have changed, or my memory may not be accurate.

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.
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Does he normally raise his arm above the specified range? If so, do you know why he does that?
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How do I get my husband to not raise his arm after his newly implanted pacemaker?
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.
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My 77 year old mother is bedridden in a nursing home and out of state (her choice unfortunately). Went to see her for a visit only to find out from the nursing home her heart rate was 33 she was supposedly fine he previous day. I was told to choose hospital (pacemaker) or hospice. She refused to go initially. She later recanted and told staff she wanted to live and go to the hospital. I am health surrogate and I disagreed but because she appeared lucid they listened to her. Cut to after surgery she is totally different. Almost like she has dementia agitated paranoid mean fighting. She scratches herself until she bleeds and takes her clothes off. I don't know what to do. And this is what I wa afraid of - that her quality of life would be worse than what it was (and it was awful before the surgery). At what point does the medical community listen to the POA or surrogate??
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Dyingisok and Eve123, prolonging life is often not the best decision. What is the quality of that life?

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.
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My dad had a heart attack at 87...they put several stints in as an emergency fix....and a temporary pacemaker. They immediately (and without extensive discussion) scheduled putting in a permanent pacemaker for a few days later. My dad had/has what I consider to be severe dementia. I had to tell him where he was and what happened every two minutes for 6 days in the hospital. He is not able to watch a movie or read a book or carry on a conversation.
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.
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My mother had 20+ years with a pacemaker that enabled her to live well and able to do for herself. At the age of 97 her batteries needed to be changed again. She fell in my garage, was unconscious. I was alone, so called 911. The cardiologist replaced the pacemaker with new leads. At the next office visit the PA said, "Good news, these new batteries last 11-13 years!" My mother is now 103, broke her hip at 100 at which time she could no longer walk. It has been 7 terrible years for her and for me. She has dementia, unable to do anything for herself, except feed her self sometimes. I can't tell you how many times I have regretted replacing the pacemaker. I am now trying to get the cardiologist to turn it off so she can pass away with a normal death. He will not do it. I finally have an end of life dr. that understands life with no quality is not really living, costing me and my husband our life and health as well as financially. I wish I could remember my mother the way she was. Please talk to the cardiologist about what would happen with and without the pacemaker. My cardiologist and his staff have a canned reply to my request to turn off the pacemaker, they are very condescending. Please think thru your decision. You will have to live with them for a looong time either way.
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Bonny, none of us like playing God. If the choice were given to me today, I think my brothers and I would agree that it would not be good to extend mom's life now.

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.
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