Post-Hospitalization
DH collapsed outside on Saturday. He's 81 with mild/moderate Alzheimers. Good health otherwise. I found him on the woodpile looking near death. He was unresponsive and limp. The hospital could not identify exactly what caused the collapse and it is possible he fell and hit his head. There were stress enzymes (troponin) released from the heart into the blood stream, but not super high and he had no symptoms of heart attack, yet they treated him like he had one with a Heparin drip.
First night in the hospital was OK and he had come around by the time we made it to the ER which was amazing. The second night in the hospital was awful-- he was delirious and combative and ripped out the IV and telemetry patches over and over and over. He threatened me 3-4 times when I tried to persuade him to leave them alone. I stopped and let him rip them out because 1) I could not stop him and 2) I did not want to escalate. We had to leave the next morning b/c he was in no condition for further testing or treatment.
He'll do a stress test and an angiogram, possibly, as an outpatient.
Because I was sleeping in the room with him, he thought we were in a hotel on vacation. He did not remember the fall or the ambulance. Now that we're home, he does not remember the hospital.
I've been told any illness or hospitalization can take a huge toll on dementia patients, and that they decline afterward. We've only been home one day but I am concerned about decline. Only time will tell.
Does anyone have thoughts on this process?
I just wanted to share my story, mostly.
Comments
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so sorry, I am sure it was difficult. He absolutely could have had a heart attack but I would not put him through any testing. To what end?
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Hi M1--Thanks for replying.
To what end? That's the question. If the stress test is positive then the angiogram will find the trouble and they can place stents. It's hard to imagine him tolerating all of this without lots of stress and possibly setbacks/decline.
I thought that it would be a reasonable endeavor until his second night in the hospital proved that his tolerance for this stuff is very low. It's not surprising. I struggle to get him to the ophthalmologist every two months for AMD injections. I struggle to get him to shower. I just want to be responsible, plus I am getting calls from his PCP and the visiting nurse and everyone who wants to follow up.
It's so wild that he spent two days in the hospital and cannot remember it.
They placed a monitor on his chest and he thinks I put it there. He told me that I did not get his permission. When I said he agreed at the hospital and he has to wear it for two weeks, he said that he does a lot for me. Sometimes I think he's just trying to be funny, but his perception is so skewed, I think he is serious.
Leaving his comfort zone--home--is so jarring for him. Is it really necessary?
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I'm sorry you're going through this🥰😢 My husband, Bill, doesn't remember any vacations in the 15 years I've known him. In the last two years we went to Hawaii, Alaska, cruses through the Panama Canal and drove to Glacier National Park(we've done this three times). The memory loses of vacations started about two years ago as well as him not knowing who I am periodically. Now I'm not sure he knows who I am most of the time but that's okay, because I'm just loving him through this horrible disease ❤️
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Alzwife: stents are not necessary for most coronary artery disease. It is equally feasible to just treat him as if he had it (with medications). That is the route I would take. If he is that advanced in his Alzheimer's, it makes no sense to me to put him though tests and procedures he can't understand and will fight. An arteriogram is no joke--you have to lie still and tolerate all kinds of monitoring, and it just doesn't sound worth it in this setting.
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Have you considered telling all the doctors and the hospital comfort treatment only, signing an DNR and asking for a hospice evaluation? Because that is the only way you will get them to quit ‘following up’ and recommending stents etc.
It sounds like he had hospital delirium. Mom behaved similarly the two days she was in the hospital in December. She thought we’d moved her to a different AL and got mad because the nurses wouldn’t let her do her laundry and go to the dining hall.
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Oh dear, what and ordeal that was for you both. I'm so sorry.
Hospital delirium is real. A dear friend's husband was hospitalized over the summer. He didn't have dementia and she's never been in the role of caregiver/medical advocate before, so she was completely blown away by how awful it was. He did everything your DH did, plus he (a recently retired judge) called central detectives to have her arrested for assault.
It can take a week or two to have a sense of what your DH's current baseline is after a hospitalization. It sounds like it's early days still around that. He may bounce back to where he was, but maybe not. This could be a chicken or the egg situation-- if there is a disease progression, it could have caused whatever happened Saturday rather than the hospital having caused what you're seeing now.
I agree with M1. Assuming you are his medical advocate and making decisions on his behalf, you are facing some very difficult decisions about future care. This is some hard stuff and there may be consequences of well-meaning decisions you make that you didn't anticipate-- things like broken ribs from CPR if he's not listed as DNR.
Having been through dementia with dad and a couple of aunts, I would think hard about any kind of medical testing that would trigger interventions in the moderate stages of the disease. Outside of dementia specialists, doctors tend to offer interventions with no regard to the impact on a PWD and their caregiver.
The end stages of dementia can be so horrific that some folks would welcome an exit ramp from some other condition. I personally would focus on comfort prioritizing breathing, mood and pain control. As dad entered later stages, his geriatric specialist discontinued his metformin, BP meds and statin while making sure his COPD was well controlled and that he was emotionally OK.
It's a harder call on the AMD treatment. My mom (no dementia) and a couple of her sisters have AMD. I can absolutely understand preserving vision, but there does come a time when visual processing is such that I might not. I can only speak to the newer injections for GA (mom's type/aunts' are wet AMD), which are not remarkably effective slowing progression by only 14-20%. I do prioritize this for my mom who is 86 and will take any delay I can get her. If it were dad, who also had moderate AMD? I would not. We stopped surveillance around stage 5ish because his doctor's office was ghastly and dad struggled with all of it.
I found this book really helpful-
HB
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Regarding the AMD treatment, we have continued that for mom. We had issues with her anxiety and a startle reflex jump during the shot. Her PCP has prescribed Valium to be taken 1 hour before her procedure. 10mg was too much, she was falling asleep in the office. So we break the pill in half. This allows her to stay calm throughout the process. I do not let her use her walker while she’s at the eye doctors office though. It’s in a large clinic and we use one of their wheelchairs.
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Thank you for sharing. It’s so comforting to know we’re not alone. It’s a shock alright when I realize he’s lost the memories that are so important to me/us, but he still has love for me and he totally depends on me and that’s enough. It’s so true that we have to preserve the peace and reflect on the love we’ve accumulated without taking their memory losses to heart.
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Thank you so much for your post. It’s so helpful! We definitely have to get his DNR signed and the identification of hospital delirium is helpful as I discuss things with doctors going forward. At the hospital this weekend one of the ER doctors went through the resuscitation protocol, the breaking ribs scenario etc and he was like I want all of it…why would anyone say no he asked her. I stood there like wow…he would not really want that. He’s thinking he’s a young guy. He’s not in his right mind.
I’ve been thinking of quitting the AMD treatment b/c the drive to the hospital is so long —over an hour one way—and sometimes I get nervous with him in the car. He complains the whole time. The idea of comfort care makes sense.
What stages does he sound like to you? He’s still continent but he’s pretty lost all the time. I bathe him and take care of his hearing aids and dentures. He manages to get dressed but is better with help…it takes a long time. He holds my arm when walking outside & when getting in & out of the car etc. He rocks to get up from sitting.
We saw a few different cardiologists doing rounds at the hospital and all were hinting that we could go home without all the advanced testing given his Alzheimer’s. It was the attendings, hospitalists, and nurses who’ve been pushing all these tests and follow-ups…just protocol I guess.
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So much great info and advice here. Thank you!
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Just chiming in here because I had a similar experience with my DH last December. He did not collapse, but suffered a short-lived episode of what seemed to be intense chest pain while I was supposed to be in a choir concert. He called DS who came and took him to the hospital. The same exact thing happened: his pain was gone and they tested his enzymes and found one that was a bit high. This led to a night in the hospital, where I also stayed with him. Unfortunately, I fell asleep about 3:00 a.m. and awoke around 6 to find he had pulled out his IV and put the telemetry unit on a bedside table. I didn't even try to get him to put them back on. I called the nurses who were apparently familiar with patients like this and finally he cooperated. He also had a stress test (he's had stents and bypass surgery in the past). Nothing was definitive, but this (in retrospect) seems to have been where he started to get worse to the point that I now can't leave him at home alone. I think more treatment would have just upset him more than it helped. Very sad.
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I’m commenting on my own post to update my kind friends here. I just called the VNS (who pushed themselves on us in the hospital) to cancel their visit today. I told them he’s seeing his GP on Friday and a visit today would be overwhelming. I am very proud of myself.
We were supposed to have the nurse visit today, AMD treatment tomorrow, and GP on Friday. It was too much! Plus he’s sleeping late and hasn’t showered in over a week, my dishes and pots & pans are piled up, I’m doing laundry. HELLO!
We got home from the hospital on Monday, power out Monday night, power restored then a tree came down yesterday and pulled the cables down, so crews were here all day yesterday. I didn’t even mention that in my original post!
as such, hearing aids were not charged and DH was really slurring yesterday without them. No shower in AT LEAST a week at this point. He’s in no condition to discuss PT or OT or whatever the nurses want to do.
again, I’m so proud of myself and grateful to you all for the support to do the best thing which is prioritizing comfort!
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Thanks for sharing. It’s really obvious that what he needs is love, not tests or stents! LOL
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good for you. Right decision for sure. Comfort should be the only priority. When I read your original post, I too felt like saying I would be delighted if my partner had an "off ramp..." my fantasy is that she dies in her sleep. It would be such a mercy.
Remember, if you have his POA, you are the one who can make the DNR decision. They should not ask him as he is in no position to answer. This is sometimes quite hard.
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This can help you figure out where he is in terms of progression/stage. The rule of thumb is that a PWD is considered to be in the latest stage for which they have a symptom but many do seem to straddle 2 or even 3 stages at once.
Tam-Cummings-LLC-Handouts.pdf (tala.org)
I hear you on the inconvenience piece to the eye injections. That sounds miserable. Initially we were going downtown (an hour by train and then either a 10 minute walk to and from the station or a shuttle that could run late in traffic or a drive that took a miserable hour and $35 parking). We were able to get in with a satellite office that's a mere 40 minutes away and a much shorter walk to the car with the unholy combination of poor vision and osteoporosis.
Good for you standing your ground on all that follow-up. My mom tends to end up in the hospital from time to time and they always want to set up nursing follow-up. We've agreed for some bigger things-- like TAVR and her knee replacement-- but most of the time I have eyes on her daily and am much more aware of what her baseline looks like. You know DH best.
We had a similar incident to the DNR with dad. He's been transferred to a rehab right after being diagnosed (mid stage) in the hospital. We were doing care planning meeting and they asked him about a DNR. He asked what that was and the admin for the DON said something to the effect of "If you got sick or hurt while you're here, do you want us to help or let you just die?" Well, when you put it like that...
A week prior after much testing, the attending in the hospital came in and told dad "You have Alzheimer's Dementia. People with Alzheimer's can like 10-15 or even 20 years" to which dad replied "that's the best thing I've heard all day". That was a real aha! moment for me.
HB
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Hugs and comfort to you and your husband. You sound better already, which is also important! And priceless.
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excellent book recommendation
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@AlzWife2023 I'm proud of you too!!! Your prescription of love and comfort care is what I am finding works best for us too. I understand the profit motive drives many of the automatic expectations of the medical system and that is really unfortunate, especially with our PWD LOs.
Caregiving is not for sissies, especially in these circumstances when a LO cannot be taken at their word, but again, they system often protects their "right" to make decisions over our "responsibility" I guess, to be the clear-minded one. I believe much of the problem is just ignorance of dementia realities and therefore policies, protocols, and training have just not caught up.
But there is so much evidence that also financial exploitation is also a big part of the problem (may as well call it what it is). I finally had words with his longtime PCP (fairly young and should have known better I thought) over them continuing to push for his colonoscopy and other such foolishness by mid-stages, all while making antibiotic refills for a recurring UTI off limits to me without an act of God. Until I asked him who I should contact when his disregard for patient safety re: untreated UTI advanced to sepsis... then they put some nasty notes in his file about my attitude, but we got someone to come out with a sterile cup and do a test with culture plus started meds. And I found a geriatric PCP to switch him to immediately after that. I can't with these people.
I finally just switched to hospice after even palliative care had no real option but "call 911" a couple of times for suspected UTI, asthma exacerbation, etc. No.
Good for you.
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Good For You, TOO, Butterfly Wings!
The discharge doc (who never examined him) was giving me an attitude about getting his DNR form filled out but "it has to BE HIS choice"---like, what are you implying?
The "prescription of love and comfort care" is working wonders so far. Fingers crossed going forward! It's interesting that to be a good caregiver, I find, entails giving up on tracking time and just getting on their wavelength, so to speak. It's a lot to give up for most people, especially difficult for those who are working outside the home or doing other normal stuff that requires you to function according to society's rhythms, but for us it's freeing to be this carefree and aside from keeping a decent sleep schedule and getting to doctor's appointments, we can move about the days as we please.
Patience is so key and rushing is a recipe for disaster.
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@AlzWife2023 and @ButterflyWings as a physician, I agree with you both 100% that we physicians have much to learn, especially from families, about understanding practical care for patients who cannot adequately communicate their needs and have behavioral issues, limited ability to perform activities of daily living, etc. Rule #1 always should be: the family caregivers know this patient the best, and if they say X won’t work, believe them. I have a child with autism, an intellectual disability, and chronic kidney disease who I have advocated for many times. The ignorance and ridiculous barriers to her care, poor decisions about medication (massive volumes of terrible tasting liquids), other things we were requested to try that she physically couldn’t do because of her disability—-it is truly stunning. I feel for you and am so sorry my profession fails patients and families this way. 💕💕💕
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Regarding the unexplained fall, it could be a drop in blood pressure instead of a trip and fall. Fluctuating or low blood pressure is very common in Lewy Body Dementia, so check out the other symptoms of this type of dementia.
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@AlzWife2023 that would have frightened me so, we might both have been unconscious for a while. @JJAz said what I was thinking - that instead of a trip and fall he might have fainted. My DH has had a few "Vaso" episodes, totally out of the blue, where he goes into an unresponsive state and passes out. He can be sitting or standing and there is no rhyme or reason for what triggers it except we do know his blood pressure drops.
It might be that your DH was exerting himself more than he can tolerate these days (or that day), and he had his first vasovagal response too.
Afterwards it is like "nothing to see here, no harm done", but in the meantime it can lead to a very serious situation - a fall with injury for him and even for you, if trying to break his fall or catch him. DH's dead weight pinned me to the side of the bathtub once, in one of these instances when I caught him as he was standing up from toileting and began losing consciousness. He went down on my lap (a softer landing which was great). I could not get us up for well over an hour, long AFTER the episode subsided and he regained consciousness. One of our longtime former members suffered a broken back when her DH fell on her as she was trying to help prevent him from falling.
This is one of the reasons he is to be within arms length at all times, for me or the aide. Not worth risking him being somewhere with an unwitnessed fall which once we know the potential would just be asking for trouble (negligent and denial, unfair to a vulnerable elder to wait for an accident before putting safety measures in place, etc. etc.). This has only happened less than 3-4 times in the last 3 years, but once is enough.
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This VERY common. There is a name for it, ICU Psychosis. My husband had it during hospitalization for a lung bleed. He had to be restrained because he tore out his drips. Headed fine after a few days.
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> @AlzWife2023 said:
> Hi M1--Thanks for replying.
> To what end? That's the question. If the stress test is positive then the angiogram will find the trouble and they can place stents. It's hard to imagine him tolerating all of this without lots of stress and possibly setbacks/decline.
> I thought that it would be a reasonable endeavor until his second night in the hospital proved that his tolerance for this stuff is very low. It's not surprising. I struggle to get him to the ophthalmologist every two months for AMD injections. I struggle to get him to shower. I just want to be responsible, plus I am getting calls from his PCP and the visiting nurse and everyone who wants to follow up.
> It's so wild that he spent two days in the hospital and cannot remember it.
> They placed a monitor on his chest and he thinks I put it there. He told me that I did not get his permission. When I said he agreed at the hospital and he has to wear it for two weeks, he said that he does a lot for me. Sometimes I think he's just trying to be funny, but his perception is so skewed, I think he is serious.
> Leaving his comfort zone--home--is so jarring for him. Is it really necessary?
Regarding you quoting him saying he does alot for you. I wonder if that's just the dementia twisting what he meant to say. Recently a friend put a lot of hours in helping my brother with some tax issues. When it was done, he told her you really owe me. In context, it was clear what he intended to say.1 -
Interesting. That would make sense. The affect is off too but I usually don’t let it bother me and I just try to be kind and positive. He does get very angry immediately if I cross him, though.
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That’s terrible but I’m glad he adjusted.
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Oh, boy! Yes, I was scared that I might be seen as negligent. There’s so much that goes along with caregiving! It’s incredible.
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Thank you!
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I've been very fortunate that my brother has been in good spirits these last few months as his issues have become more apparent and we chase down a firm diagnosis. I don't think I would do as well if the roles were reversed.
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Yes, his diagnosis was syncope but he had elevated troponin so they went all in on the testing.
It was bad b/c he did hit his head when he fell and he scratched his glasses but luckily the head injury was superficial.
I’m feeling more & more like he should always be at arms length after re-reading your post.0
Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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