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.


She may not like the feeling of being reset by the pacemaker, and she may want it out. I don't want to say that it worsens dementia, but what it does is make the person more active. So instead of being a little goofy sitting in a chair, they are able to put action into their bizarre thoughts. So if she says she has changed her mind and wants it out, abide by the request.
Will do, Pam! Interestingly, when she came out of the sedation after the procedure, she got after the nurse to turn on the Kentucky Derby. the nurse came in to tell us how funny this was, when we realized it was time for the Belmont! Interesting days ahead, I think. I was reassured by the fact that the doc told us that it can be reversed. He also distinguished it as NOT being an extraordinary measure.
I have a feeling your mother is a strong person and won't develop the psychosis or isolation you suspect, but if she does:

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.
So far, so good! She a good overnight, she was sleeping at noon when my brother and sil came to visit . permanent pacemaker durg is scheduled for 8 am tomorrow . Thank you all for your support. I worried about he psychosis stuff, not because she's not strong she developed hospital psychosis a couple of years ago when she was isolated for a three day eeg she thought she was in a basement turned out that she was channeling an episode of Monk. But so far, all is well
Your life event is almost identical to ours. My Mother in law is 91 also. In Sept 2014 she fell and fractured six vertebrae in her back. They let her go home because she came to stay with us. As the vertebrae did not come out of socket, she was walking, with a walker and doing well. She went back home and was fine there for three weeks, we took her for regular blood tests, and she war a heart pack for 24 hours. When she went to the heart specialist in Nov. (two weeks after the heart pack) they said her heart rate was 180 and she had to stay in the hospital. She stayed for a week, they gave her meds to level her heart rate, she came back to live with us. Mentally she was fine, she was wobbly with the walker , but doing well. Her heart rate did well, but her blood pressure was very high at times, we monitored it twice a day. I went to work for a month, and my husband was with her during the day, and I was with her at nights, she did not have dementia at this point, and was hoping to regain her strength and return home in the Spring. I kept finding her breathing getting worse (she has C.O.P.D.) I did not think it was a normal progression. I spoke with her doctor, and we were taking her in twice weekly for INR levels. Her kidneys are only functioning at 20%. I stopped working and on the first Monday I stayed home, I called an ambulance. As it turned out she had congestive heart failure and fluid on the lungs. Her heart stopped in the hospital, and started on it's own. They rushed her to the closest heart hospital, and there they put in a temporary pacemaker with a permanent one to go in on the Monday. We left her fine, lucid, and talking well. The Monday a huge snow storm hit, we couldn't get to the hospital, an hour away. They said the procedure went fine and she was fine. The Tuesday, the nurse said they found her in another person's bed and confused, I told my husband snow or no snow we were going to get her on the Wedn. (the other son was to have gone on the Tues and couldn't make it due to snow). When we picked her up she was confused, and her breathing didn't seem right. I told my husband when he took her to get her blood done to tell them to ex ray her again for congestive heart failure, and water on the lungs. She was starting to talk out loud and ask for people and talk about events from 30 years earlier, it was subtle at first. Totally out of character, one minute she would be talking normal, the next she was out in left field. I spoke to the doctor about it, and yes she had congestive heart failure and fluid on the lungs and had to stay in the hospital for four days. They put her in a ward with men both times, she was absolutely traumatized by it. She has been home now three weeks, and I am not getting any sleep. She get up without asking for help, and she can not balance, she has fallen three times, and almost a forthe when the caregiver was here giving her a bath. She can not concentrate on her puzzles, can not sew, or knit, and sees things in the walls, windows, even mirrors. I have had to remove a mirror from her room. My Mother had Alzheimer's, and my Grandmother, this seems different, she is hallucinating at times, and is only on the Warfarin and heart meds. She has been eating well, I cook her her own recipes. She was and still tries to be totally in control and independent, which is causing major problems..She will get up on her own, and if we are not right there beside her she will fall. If we hear the click click of the brakes on her walker we jump. We are purchasing alarms. This morning she was demanding we take her silverware to the bank they had a special deal to buy the silver she says. We won't have her T.V. installed until Tuesday, and the only shows she has seen I have shown her on Net flix or You tube...yet last night she was at a meeting all night, at the Orange hall, and the night before she went to one of her old houses and took out the garbage and trimmed all the flowers. My Grandfather had Dementia (hardening of the arteries) and I remember his behavior similar, but not the hallucinations. At first my husband would calm her and convince her the events never happen, but I told him not to argue with her to just change the subject. I swear it is the pacemaker, and I do not know what to expect next. This woman had an amazing life and was quite the Matriarch. I promised her she would not go to a home, she would die in a week. But other than ordering bed and door alarms I am at a loss what to do..
We are faced with the decision on whether to have a pacemaker implanted in my mom (age 83) who has vascular dementia. If anyone has an update from your situations above that you feel like sharing, I would greatly appreciate your thoughts on whether you feel the pacemaker in the long run was helpful or harmful to their loved one and their quality of life.
So happy to be able to talk to my friend on the phone. She is in her eighties, has a pacemaker. I would miss her way too much, she has more energy and 'adventures' than most, living in her own home with very little family help.
Dancing bean, other people's experiences may not be directly relatable to your mother's situation. It's not straightforward because there are various types of pacemaker doing subtly different jobs: for example, there are some that come with a defibrillator and some that don't; some have two leads and some three... there are too many variables for direct comparison.

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.
Dancing bean, three years after the fact, my mom is still alive. She is almost totally aphasic from her 2013 stroke. She spent the summer thinking that she had leprosy.  She doesn't want to see her new great grandson because he might catch it.  This is no longer my mother.

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.
Barb, I'm so sorry about your mother. So sad and difficult. Thank you for sharing. It is so helpful to me. My Dad is 92, had a stroke a year ago, severe memory loss and moderate dementia.
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?

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