Pacemaker in elderly person with dementia
August 27, 2022 2:52 AM Subscribe
My dad was given a pacemaker, unfortunately he has dementia so doesn’t understand what’s happened. Any advice on helping him through recovery?
Bradycardia (34-39), previously diagnosed a-fib, shortness of breath and fatigue led to this. I took him to the ER last Friday, he’s been here in the hospital since then, and had the procedure yesterday. Apparently he also now has mild heart failure.
He doesn’t know he had a procedure or why things hurt. He can’t remember not to fiddle with the wound or to avoid raising his head. Until tonight, they had a sitter with him.
(A nurse decided that a hesitant positive response to a single heavily leading question excluded confusion in an 89 y/o with baseline dementia on two kinds of painkillers… so the sitter who was going to be here was cancelled. Anyway.)
Recovery should take 6 weeks. The device is under the muscle to prevent him fiddling with or being confused by it. Doctor couldn’t say how long healing time might be exactly.
Usually he lives alone with support workers coming 3 x a day. Walks comfortably around his neighborhood. We have a camera and a GPS. I see him 3-4 times a week and he spends a few other days with very close friends who look after him well. Not going to cut it.
Either 1) I live with him for the six weeks, with occasional relief from family friends, or 2) he stays in a transitional care unit in town where he won’t have 1:1 support, will have wound cleaning, meals and meds. At home he’d have the same through home support but would be totally alone at least some of the time. I have things to do and one other person to care for who isn’t well (multiple organs going wrong, not urgently dire but needs care and advocacy because the GP is uh, whatever he needs advocacy). But I don’t know, maybe I can manage.
So far (day 2 after surgery) I’ve noticed his breathing is a little laboured and his shoulder jerked up twice. Will ask doc about this tomorrow morning.
He needs to be reminded to not raise his arm, a sling will help but obviously that won’t do it. Site needs to be checked daily for infection (and so does he for systemic signs). Exercises to avoid frozen shoulder.
I understand there’s a trade off between pain control and cognition, however it’s very hard to see your now-vulnerable dad you love cry and not know what happened to him.
He can’t wear t shirts obviously. Needs an updated medic alert bracelet. He will definitely lose the card with device information, I’ll have to sew something into his clothes.
What else do I need to be thinking about? Very anxious.
Bradycardia (34-39), previously diagnosed a-fib, shortness of breath and fatigue led to this. I took him to the ER last Friday, he’s been here in the hospital since then, and had the procedure yesterday. Apparently he also now has mild heart failure.
He doesn’t know he had a procedure or why things hurt. He can’t remember not to fiddle with the wound or to avoid raising his head. Until tonight, they had a sitter with him.
(A nurse decided that a hesitant positive response to a single heavily leading question excluded confusion in an 89 y/o with baseline dementia on two kinds of painkillers… so the sitter who was going to be here was cancelled. Anyway.)
Recovery should take 6 weeks. The device is under the muscle to prevent him fiddling with or being confused by it. Doctor couldn’t say how long healing time might be exactly.
Usually he lives alone with support workers coming 3 x a day. Walks comfortably around his neighborhood. We have a camera and a GPS. I see him 3-4 times a week and he spends a few other days with very close friends who look after him well. Not going to cut it.
Either 1) I live with him for the six weeks, with occasional relief from family friends, or 2) he stays in a transitional care unit in town where he won’t have 1:1 support, will have wound cleaning, meals and meds. At home he’d have the same through home support but would be totally alone at least some of the time. I have things to do and one other person to care for who isn’t well (multiple organs going wrong, not urgently dire but needs care and advocacy because the GP is uh, whatever he needs advocacy). But I don’t know, maybe I can manage.
So far (day 2 after surgery) I’ve noticed his breathing is a little laboured and his shoulder jerked up twice. Will ask doc about this tomorrow morning.
He needs to be reminded to not raise his arm, a sling will help but obviously that won’t do it. Site needs to be checked daily for infection (and so does he for systemic signs). Exercises to avoid frozen shoulder.
I understand there’s a trade off between pain control and cognition, however it’s very hard to see your now-vulnerable dad you love cry and not know what happened to him.
He can’t wear t shirts obviously. Needs an updated medic alert bracelet. He will definitely lose the card with device information, I’ll have to sew something into his clothes.
What else do I need to be thinking about? Very anxious.
I have a pacemaker. After he heals from the implant procedure, he won't be aware of it unless he feels a lump and worries about it.
You didn't mention bruising. I had a bruise that grew in size until it covered half my chest, probably just from blood released during the procedure. It took quite a while to go away completely. This is apparently usual. I can see it being another source of concern for your father.
Fortuitously, we had redone out shower with a fold-down seat and a handheld shower head which made it a lot easier to get clean while keeping the dressing dry.
posted by SemiSalt at 4:53 AM on August 27, 2022 [2 favorites]
You didn't mention bruising. I had a bruise that grew in size until it covered half my chest, probably just from blood released during the procedure. It took quite a while to go away completely. This is apparently usual. I can see it being another source of concern for your father.
Fortuitously, we had redone out shower with a fold-down seat and a handheld shower head which made it a lot easier to get clean while keeping the dressing dry.
posted by SemiSalt at 4:53 AM on August 27, 2022 [2 favorites]
One part of your question jumps out at me, the care now versus the care going forward and your realistic concern about what will happen next. My comments are based on my experiences in the US.
Now Care
Right now, the hospital should be taking care of most of this though of course you need to be diligently aware of and involved in what's happening with his care. In the US, there should be a social worker assigned who you should engage with and explain your concerns so they are documented in the case file. A sitter is assigned to prevent a tracked hospital issue such as falls, if there is not a risk of a fall or other serious event then they won't assign as sitter.
Next Care
The hospital should be very engaged with what the next step is. It is on them to not release and them to have to readmit because they did not have a plan for adjusting to the next step ...
The next step may be a step down to skilled nursing. You should not have to imagine going from hospital to home for 6 weeks. Likely they should not release him to the home situation you describe. So emphasize to them, the social worker, that he does not have support at home and needs to go to skilled nursing. (Do not tell them you can move in with him for 6 weeks or they will release him to you. So don't do that unless you want to.) (They want to release him as soon as possible to free up the bed.) They will give you the options or option of what skilled nursing locations are around so be prepared to research that and determine best locations, try not to feel rushed to decide that minute, say I need a day.
posted by RoadScholar at 8:47 AM on August 27, 2022 [2 favorites]
Now Care
Right now, the hospital should be taking care of most of this though of course you need to be diligently aware of and involved in what's happening with his care. In the US, there should be a social worker assigned who you should engage with and explain your concerns so they are documented in the case file. A sitter is assigned to prevent a tracked hospital issue such as falls, if there is not a risk of a fall or other serious event then they won't assign as sitter.
Next Care
The hospital should be very engaged with what the next step is. It is on them to not release and them to have to readmit because they did not have a plan for adjusting to the next step ...
The next step may be a step down to skilled nursing. You should not have to imagine going from hospital to home for 6 weeks. Likely they should not release him to the home situation you describe. So emphasize to them, the social worker, that he does not have support at home and needs to go to skilled nursing. (Do not tell them you can move in with him for 6 weeks or they will release him to you. So don't do that unless you want to.) (They want to release him as soon as possible to free up the bed.) They will give you the options or option of what skilled nursing locations are around so be prepared to research that and determine best locations, try not to feel rushed to decide that minute, say I need a day.
posted by RoadScholar at 8:47 AM on August 27, 2022 [2 favorites]
The transitional care unit should be taking care of frozen shoulder and other healing concerns, coordinating home health visit and various therapies including speech therapy which can be good for dementia - not just wound care, meals, and meds.
posted by RoadScholar at 8:49 AM on August 27, 2022 [1 favorite]
posted by RoadScholar at 8:49 AM on August 27, 2022 [1 favorite]
In our own experience, one of the big advantages of transitional care is that it allowed to visit with our elderly family as much as we could but also meant that we could go home at night and take a 100% break in way that we couldn't if they were sleeping in the next room. Being at a rehab facility wasn't great - I know that my family member would have preferred to be a home but that would have been a quick path to burnout for us plus they got the benefit of daily PT and OT, daily checks from a nurse, etc.
posted by metahawk at 3:50 PM on August 27, 2022 [2 favorites]
posted by metahawk at 3:50 PM on August 27, 2022 [2 favorites]
i have heart failure and a pacemaker. depending on the meds he's on for the HF, he may be much more tired than usual. did they go over with you fluid/food restrictions? did they talk to you about the pacemaker and how often he will be paced (100% of the time, 40% of the time, etc.). at what BP will the pacemaker kick in and start pacing him? is it JUST a pacemaker, or is it also an ICD given the heart failure? these are things you and other caretakers should know.
the card with the device info is something i have in my wallet, but not something i worry about having on me at all times. it tells the serial numbers of the battery and leads, and if it is mri-compatible. that's something you can take a pic of and have on your phone. he doesn't need it sewn into his clothes.
if someone is there helping him dress, tshirts are still totally doable. with assistance you can get those on without lifting your arm above your head.
posted by misanthropicsarah at 9:07 AM on August 29, 2022 [1 favorite]
the card with the device info is something i have in my wallet, but not something i worry about having on me at all times. it tells the serial numbers of the battery and leads, and if it is mri-compatible. that's something you can take a pic of and have on your phone. he doesn't need it sewn into his clothes.
if someone is there helping him dress, tshirts are still totally doable. with assistance you can get those on without lifting your arm above your head.
posted by misanthropicsarah at 9:07 AM on August 29, 2022 [1 favorite]
Response by poster: I’m living with him full time for the next six weeks. The transitional care units could only offer tele-monitoring, which doesn’t actually solve the problem of him raising his arm (which would pull the lead out of his heart and mean a second surgery), because he’ll have already raised it by the time anyone could respond. His hearing isn’t great, so he wouldn’t be able to hear instructions to lower it through the telecom anyhow.
They could barely manage it in an acute-care setting - so far, I’ve had to eg call at least twice for pain meds per time, have had to relay key information across shifts myself or it’s been lost or forgotten. With even lower staffing ratios outside of it, forget it.
Should have mentioned we’re in Ontario, Canada. We don’t have skilled nursing facilities, only hospitals, these transitional care units, and long-term care homes (and retirement homes, which at 6-10k/month, are out of reach, though I’m not sure they’d offer the specific care required here).
Another disgusting thing about Ontario now is that our majority conservative government has just passed law, bypassing committee review, which allows hospitals to move elderly people to any long term care home that has space, even if it’s 30-300 km away from family. These would be privately owned homes (owned by conservatives and their friends), which have unanimously had worse death rates than municipal and non-profit homes. The ones that have space are usually the worst ones. This can be done without the family’s consent. There’s no way I’m exposing him to that possibility when 85% of homes were found to commit serious abuse or negligence over a 5 year period, and that was before this giant asshole of a government cut down inspections. Quick edit: an OT at a transitional care home would be deciding if his next step would be an LTC. They don’t all seem to be aware of how delirium can happen with pain meds or indeed institutionalization.
So in preparation for taking him home (discharge is tomorrow morning), I got a slightly better sling - couldn’t find one with a belt that could get here in time. I may get a bed alarm to notify me when he gets up in the middle of the night. Will sleep in the same room, though. I’ll keep daily PSW visits as that will allow me to shower. My friend referred me to an amazing PSW who will be able to do nights sometimes and takes cash. My dad has friends who have been communicating with me about wanting to take him a few afternoons a week. My boyfriend will stay over some nights, too.
He does have an enormous and terrifying looking hematoma with palpable clots, but it’s soft and the clots are superficial, and improving, so they don’t want to do anything about it. As long as my dad doesn’t see it, he won’t worry about it. I’ll cover the mirror in the bathroom.
misanthropicsarah - I was told he had only mild heart failure, they had him on furosemide initially as he had some edema, but they took him off it very soon, otherwise he’s just on BP meds (slightly tweaked now) and his regular blood thinner. He does say he’s very tired. He breathes differently both at rest and with exertion, so I’m not convinced. They said his lungs are clear so they’re not bothered… I will be following this up with his regular outpatient cardiologist.
He has one lead, I think in the atrium… no ICD, just a pacemaker. Paced 100% of the time, range is 60-130 bpm. I’ll ask more tomorrow at discharge.
The shoulder twitching is very strange. The cardiologist and NP say it’s not from the procedure because it didn’t show up on interrogation. They say it’s a hypnagogic jerk, despite it also occurring now when he’s awake, or a magnesium deficiency, despite the fact that they check his electrolytes daily and his magnesium is normal. Or more plausibly, inflammation from the operation. The electrophysiologist said it’s *possible* the test isn’t capturing something. It’s apparently a rare complication, FML. My dad told me about it himself, so it’s significant enough that he’s remembering it at least sometimes. Here’s hoping it’s just inflammation. (That’s another thing an institution wouldn’t be on top of.)
posted by cotton dress sock at 7:00 PM on August 31, 2022
They could barely manage it in an acute-care setting - so far, I’ve had to eg call at least twice for pain meds per time, have had to relay key information across shifts myself or it’s been lost or forgotten. With even lower staffing ratios outside of it, forget it.
Should have mentioned we’re in Ontario, Canada. We don’t have skilled nursing facilities, only hospitals, these transitional care units, and long-term care homes (and retirement homes, which at 6-10k/month, are out of reach, though I’m not sure they’d offer the specific care required here).
Another disgusting thing about Ontario now is that our majority conservative government has just passed law, bypassing committee review, which allows hospitals to move elderly people to any long term care home that has space, even if it’s 30-300 km away from family. These would be privately owned homes (owned by conservatives and their friends), which have unanimously had worse death rates than municipal and non-profit homes. The ones that have space are usually the worst ones. This can be done without the family’s consent. There’s no way I’m exposing him to that possibility when 85% of homes were found to commit serious abuse or negligence over a 5 year period, and that was before this giant asshole of a government cut down inspections. Quick edit: an OT at a transitional care home would be deciding if his next step would be an LTC. They don’t all seem to be aware of how delirium can happen with pain meds or indeed institutionalization.
So in preparation for taking him home (discharge is tomorrow morning), I got a slightly better sling - couldn’t find one with a belt that could get here in time. I may get a bed alarm to notify me when he gets up in the middle of the night. Will sleep in the same room, though. I’ll keep daily PSW visits as that will allow me to shower. My friend referred me to an amazing PSW who will be able to do nights sometimes and takes cash. My dad has friends who have been communicating with me about wanting to take him a few afternoons a week. My boyfriend will stay over some nights, too.
He does have an enormous and terrifying looking hematoma with palpable clots, but it’s soft and the clots are superficial, and improving, so they don’t want to do anything about it. As long as my dad doesn’t see it, he won’t worry about it. I’ll cover the mirror in the bathroom.
misanthropicsarah - I was told he had only mild heart failure, they had him on furosemide initially as he had some edema, but they took him off it very soon, otherwise he’s just on BP meds (slightly tweaked now) and his regular blood thinner. He does say he’s very tired. He breathes differently both at rest and with exertion, so I’m not convinced. They said his lungs are clear so they’re not bothered… I will be following this up with his regular outpatient cardiologist.
He has one lead, I think in the atrium… no ICD, just a pacemaker. Paced 100% of the time, range is 60-130 bpm. I’ll ask more tomorrow at discharge.
The shoulder twitching is very strange. The cardiologist and NP say it’s not from the procedure because it didn’t show up on interrogation. They say it’s a hypnagogic jerk, despite it also occurring now when he’s awake, or a magnesium deficiency, despite the fact that they check his electrolytes daily and his magnesium is normal. Or more plausibly, inflammation from the operation. The electrophysiologist said it’s *possible* the test isn’t capturing something. It’s apparently a rare complication, FML. My dad told me about it himself, so it’s significant enough that he’s remembering it at least sometimes. Here’s hoping it’s just inflammation. (That’s another thing an institution wouldn’t be on top of.)
posted by cotton dress sock at 7:00 PM on August 31, 2022
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One thing is that this is temporary. My situation is a little different, but the thing with dementia is that eventually they'll forget. They'll forget to forget. Recovery will involve a lot of reassurance and reminding. You may already be down this path, but don't be surprised by regression and that you'll have to simplify your explanation. "You had surgery to help your heart." "Don't cry, it's a good thing. You just have to be in the hospital (or wherever) for awhile until you're healed. Then we'll go home." That kind of thing. It's not infantilization per se, it's just that details beget confusion. Long story short, once the surgery wound is healed and the painkillers are a thing of the past and all that, if he's like my Mom he'll either just absorb it as a fact of life or forget it ever happened.
The transitional care option gives you some defined period for this phase, and might give you better physical and occupational therapy options, though it's still institutional. If you have people staying with him, for how long will people be there? You'll have to have a plan for T + 6 weeks.
It's late here, I might have some more thoughts later.
For the sling, get a collarbone sling, which has a band that goes around the torso where the elbow of the sling is attached. No raising arms that way!
posted by rhizome at 3:25 AM on August 27, 2022 [4 favorites]