Dementia and pacemakers.

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!

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.

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.

Does he normally raise his arm above the specified range? If so, do you know why he does that?

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.

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??

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.

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.

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.

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.

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?

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.

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.

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.

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.

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..

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 garage.it turned out that she was channeling an episode of Monk. But so far, all is well

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.

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.

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.