PT recommending Subacute Rehab
Hi All! My DH is in the hospital with viral bronchitis. He is stage 6 dementia and is always disoriented and delusional.
Last week he caught a cold and it settled in his lungs. On Saturday he fell a few times so I called for an ambulance. He fell twice in the ambulance. They couldn't wheel him in because we had snow. They took him to the ER.
He was under observation in the hospital until Sunday when he was admitted for hypoxia (low oxygen). His O2 levels remain at 91 on 3 liters of oxygen. They have him on steroids and nebulizer treatments. Yesterday his chest x-ray showed left focal infiltrates or atelactasis. SInce Sunday he has been unable to pull himself into a sitting position. He told me he feels like he is dying. So sad. The Dr. is deciding whether to start him on antibiotics.
The PT at the hospital is recommending subacute rehab upon discharge. I don't know whether to do the subacute rehab or to have a nurse and PT come to the home. I don't know if I'll be able to care for my DH if he is unable to sit up by himself or if he will go back to baseline when the infection clears. Any advice is appreciated.
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So sorry, hospitals are tough places for folks with dementia. I would plan on the rehab stay at the very least. If you get lucky he might return to baseline, but it may take weeks, and he may not. It would be very unusual for him to be well enough to go home straight from the hospital.
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@easy23 You and he need lots of help right now and respectfully, I would call hospice in for an evaluation for services. It is not a death sentence or giving up. I think it his best chance to rally - or not. Hospice moves very quickly to ensure comfort including pain management, and would probably proactively start oral antibiotics, I am guessing. They can provide all the meds you can get at the hospital. Just not IVs which I would want my DH not to have by Stage 5-6 anyway. Hospice has 24/7 on call nurse practitioner and the dr + pharmacy and can provide referrals for in home PT, OT, etc. this will help you have a team to think through best options with you and support you throughout.
While a rotating staff of hospitalists - Dr's and specialists may wait and see on some things, not being very dementia informed, instead hospice care is like a quick response team - they will deliver to your home immediately whatever equipment you may need including a hospital bed, bedside commode, rollator, special recliner if you want, the hygiene supplies, meds, oxygen machine, nebulizer and meds. (They are just as quick to come back and remove what you don't need, and "graduate him from hospice" even at your request if he bounces back soon as he definitely could).
A nurse will visit at least weekly (probably 2-3 times for now). CNA also, to help you with physical care, bedside bathing, dental and skin care. And you likely will qualify for a few hours of home health aid visits weekly (respite) so you can get a break - sleep, run an errand, do nothing, etc.
PT rehab? I'd cross that bridge when I came to it. But yes it can work, even in Stage 6. My DH did very well with 12 PT rehab visits while on in-home hospice after an ER and hospital trip from hell that he should not have been sent on. He regained ability to sit up, hold his head up, feed himself, stand, transfer, and walk. The key I think, was he was only in decline and the acute setting away from home -- for a week and he did not have an infection or any health challenges at the time really except dementia.
If he "is always disoriented and delusional" had he been taking any meds before ER to manage those behaviors? If not, hospice will help with that as well because behavior is communication for our PWD LOs and he likely is experiencing anxiety, confusion and unneeded distress. Hoping they also check him for UTI with a culture while in the hospital, but I'd get him out of there soon. It is no place to recover.
Most here will tell you that a hospital is no place for anyone with dementia. The hospital delirium, totally confusing and triggering sounds, noises, people, schedule, etc. can make him decline exponentially, even if temporarily. With covid variants ramping up, he is more likely to possibly get flu, rsv, or covid while there. When I was in that position, I brought him home. And he had a very good year after getting back to his baseline in just a couple of weeks ...only now beginning to show some new progression into Stage 7. Hospice team has been incredible throughout. I highly recommend it. You and he deserve to be supported at the level he is right now, and then go from there.
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The way I see it, you have 2 options-- hospice or transfer to a subacute setting. The hospital setting is going to cloud his current level of function so you may be making this decision blindly. He could potentially recover to his stage 6 baseline or a little below in time or not. I would not bring him home without 24/7 nursing support.
I have a friend who was in a similar situation with her DH over the summer minus the dementia part. That said, there was plenty of hospital delirium that included him calling the police to arrest her for assaulting him and calling security to tell them to search her bag for stolen drugs. He spent over 2 months in the hospital with breathing issues like those you are describing-- he was much worse when they were unable to get his O2 into the 90s. He was initially discharged after a month. She declined the subacute admission (against my recommendation) and brought him home with a visiting nurse and PT/OT. It did not go well-- he wasn't compliant with his meds, O2 use or therapy exercises-- and ended up back in the hospital within the week. Worse, my friend was on her own providing care for someone who was both abusive and wouldn't cooperate and was declining before her eyes.
HB
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Choose the subacute setting for your loved one. Bringing him home without 24 hour support it's going to be very difficult. Wishing you the best.
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Please choose the rehab. You aren’t hurting him by choosing it- you are choosing what is in his best interest. If the doctor thought you alone could handle 24/7 care for someone in his condition, he wouldn’t have recommended rehab. He will get 24/7 care by people who get a good night’s sleep and who go home after their shift. You will be his advocate, and a frequent visitor. Plus you get to rest. You need to be well rested to continue his care after rehab.
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Thanks for your valuable insight!
I just got back from the hospital. My DH now has pneumonia and they are starting him on antibiotics. He is very delusional and the Dr said the steroids make it worse and will wean him off them. The Dr. said that the subacute rehab won't take him if he is on restraints. The hospital has Posey wrist restraints on DH because he was trying to get out of bed when he was first admitted and he also keeps taking out the IV and heart monitor. They couldn't give him a sitter because he was contagious. He is much weaker now and couldn't get out of bed if he tried. They will have to take off the restraints and bring in a sitter in order to go to SAR. What happens if SAR won't take him?
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This is a sad and stressful situation . Why not have hospice in to evaluate? What can the outcome possibly be here?
I agree with Butterfly Wings, having been down this road myself.
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I think i agree with the hospice evaluation also. This may shock, but I'll take it a step further: remember, you don't have to agree to the antibiotics. Or the steroids. Or the nebulizer. Or the IV, even. There's a reason they call pneumonia the old man's friend. Morphine and oxygen can keep him comfortable if that's what you decide you want to do.
This is all hard and I'm sorry....
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You have not mentioned DH code status. Oxygen level of 91% on 3L oxygen is ok but concerning. If his oxygen level starts increasing and they become able to start lowering his oxygen then you will have the rehab, hospice etc. decisions to make.
The other very real possibility is that his oxygen level will fall more and how far do you want to go if that becomes reality. Life support is going to become a decision you will may have to make then if he is a full code, depending on how bad things get. This can happen very quickly. Just something to be aware of so it doesn’t take you by surprise if it happens.
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My DH is full code. They asked if he had an advanced directive while in the ER and I said yes. My DH understood the question and said that he wanted full code. They honored his wishes.
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easy23, I am early on in this caregiver journey and do not have experiences to draw from that others here can. But what I can offer is sincere caring for the stress you are under.
I have had many long (and crisis) hospital stays with my son when he was young and with my parents at the end of their lives. My son is now a grown man and father with stable health.
Each hospital stay was a wild roller coaster ride of ups and downs as you navigate changes in medical staff (and advice) as well as the health of your loved one varying moment to moment. I can only imagine how much harder it is when you are the advocate for a loved one with cognitive issues.
If I could offer any advice, it would be to listen to yourself more than anyone else. You know your DH better than anyone and you are making decisions from your heart ( and your head) as to what is best. Trust yourself as much as you can.
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I don’t know if you can be on hospice and be a full resuscitation. I could be wrong—that just doesn’t sound right. Remember that if he gets put on a ventilator, you might be asked soon if you want a tracheotomy and feeding tube. I may be jumping the gun here, and @M1 can offer his opinion. As a physician hearing the situation, I would want you to understand the future possibilities you could face, if you choose full resuscitation. I also am wondering if someone who is “always disoriented and delusional” with Stage 6 dementia can understand the meaning of full resuscitation, the possibility of a cardiac arrest, what that means for eating, drinking, and breathing, etc. I wish you comfort and peace with whatever your plans and choices are.
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My step-father just went on hospice. I was told that it’s very unusual for a hospice patient to be a full code. My step-father has been a full code, and his new hospice RN explained the facts to him and he switched to a DNR. The facts are below:
In his situation, none of the conditions he has can be fixed by a full code. He’s reached the time of life where his body is failing.
Here is what you need to know about a full code - they will break his ribs doing CPR. My mom recently fractured her ribs falling and ended up with a punctured lung- which could have caused her to come down with pneumonia. A relative’s significant other suffered a heart attack, was in bad shape for several days, and over the course of her hospital stay was resuscitated. She ended up with broken ribs and my relative was persuaded to sign a DNR because a second attempt would be a bad thing.
As housefinch mentioned, these patients, if successfully resuscitated, often end up on a ventilator. The hospice nurse told my step-dad that’s what would likely happen and that he wouldn’t be able to communicate with us in his final days and hours.
Was all those factors explained to your spouse? Is he capable of understanding all of it … or is he like my step-dad? My step-dad answered the question the last few years with ‘if I can be fixed’ so the doctor would mark the code rather than explain the facts to him. That 2) his conditions can’t be fixed by a full code and 2) broken ribs and a ventilator would be the result.
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As my husband's POA, even if he managed to request full code somehow, I would feel compelled to respect his actual DNR wishes expressed before cognitive decline. I believe @housefinch is right, that hospice would request a DNR (at least ours did) with the understanding they could simply discharge him should it come to that and at some point you decided to request 911, hospitalization, full code, etc.
A full code for someone in most of our PWD LO's condition means broken ribs, the experience of a physical attack that could not be even remotely comprehended by my DH at least, and certain pain, further rehab etc. At 80+ and Stage 7 dementia (even by Stage 5) I would not consider subjecting him to that trauma.
The book "Being Mortal" is often recommended here. I think it is time I read it, even though I am ready to let DH go with as little pain and suffering as possible. But thus far I have not been able to decline a nebulizer or oral antibiotics and oxygen when needed to relieve respiratory distress, and I doubt that I will ever elect to withhold those things. Maybe at some point with the oral antibods, still unsure if I will get there - I really can't say yet. But ER's, IVs ambulances, etc., no. No more of that for him. We do know how painful these end of life decisions are.
***on a totally different note, @WIGO23 THANK YOU for your important input. Your closing thought was exactly what I needed to hear at this moment for a situation I had great anxiety about this evening. You unknowingly just helped me SO much. I can't thank you enough for this: "If I could offer any advice, it would be to listen to yourself more than anyone else. You know your DH better than anyone and you are making decisions from your heart ( and your head) as to what is best. Trust yourself as much as you can."
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Easy, I will weigh in again. If he has an advanced directive executed when he was competent, I would look at that again and see what it says. If he wanted "full code" in that no matter what, so be it. But I can tell you from experience what happens in these situations: and it is not good or pretty. Hospital staff know for the most part who has a chance of recovery and who doesn't, and although they would "go through the motions" to code him, they would probably do what's called a "slow code" in which they wouldn't try very hard and would have a low threshold for letting him go. CPR on an old, frail chest in someone who already has pneumonia is rarely survivable; he would end up with broken ribs and/or sternum, skin burns from heart shocks, possible collapsed lungs requiring very painful chest tubes, a urinary catheter, a feeding tube, a trach tube down his throat, and very very little chance of coming off a mechanical ventilator. And to return to what? More stage 6? I fear you would be prolonging his death, not his life. Not the way I would want to say goodbye.
I am hoping that he did execute a living will when competent that specifies limits to care in the face of irreversible illness. That document is what I would honor.
Again, my heart goes out to you.
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From what I understand Medicare doesn’t require a patient to sign a DNR for Hospice.
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You are most kind to let me know you were helped by my thoughts. Knowing that has lifted my spirits!
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My DH's advance directive says that if his attending physician determines that death is imminent or he has no chance of coming out of a coma, or is in the terminal phase of an irreversibly fatal illness; they should withhold treatment including fluids and nutrition; CPR; mechanical ventilation; chest compression; defibrillation; etc. It also says that all treatment can be withdrawn to honor his wishes. My husband's verbal request for full code overrode my saying he has an advance directive.
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He IS in the terminal phase of an irreversible illness easy. I would bring his advanced directive to the hospital and ask to speak to someone about it. If you hold his POA then that matters very much in this situation.
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Your very first paragraph in the original post says he is stage 6, confused and delusional. He’s therefore incapacitated in terms of deciding his medical care. The decision should have been directed to his medical POA. As M1 says, start making noise. Start by requesting to see the patient advocate.
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@easy23 This is the kind of abusive exploitation that watchdog groups &/or journalists need to know about.
Even if you do not hold medical POA or cannot locate it, some (many?) states designate the Spouse as the automatic surrogate decisionmaker for healthcare in cases of dementia or other incapacity.
I was told by (attorney) member and fellow spouse caregiver Crushed on these boards years ago, that a POA is only a piece of paper. It requires someone to stand up and enforce it. They are violating your DH's wishes and your own rights which may be due to the almighty profit motive, sadly.
If they respected his original advanced directive which is the ethical and legal thing to do, then they can't bill for all the invasive, unwanted, unnecessary procedures. So, just ignore his spouse, caregiver, POA, and his own advance directives. (FWIW, I'm experiencing the same immoral tactics in guardianship court after a predatory filing to take over my DH and his affairs claiming he has no one (um...?) and no POA (um...?) and his prior legal actions (directives) are thus being challenged because abuse of position and power is rampant in these systems that stand to benefit financially when they exploit defenseless elders, PWDs and others with disabilities).
For the medics, whatever happened to "do no harm?". I'll bet he has good insurance. smh and furious for you both. Go get 'em! I'd email a copy to the ombudsman, social worker, and cc their Board chair so you have a paper trail. Also, any local entity that might have patient advocacy responsibility. Could be a legal aid organization that handles elder law. Just to let them know you are are serious and this is urgent.
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re: in home hospice
i was told by ny hospice that calling 911 or taking loved one to the ER is discouraged. they want you to call the hospice-assigned nurse. that's one of the reasons i declined hospice care; i want the freedom to call 911 and for my mom to be taken to the hospital of my choosing, and to get treatment.
on the other hand, the mother of a friend of mine had great in home hospice care.
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i am so discouraged. subacute care was recommended for my mom. the insurance was denied, however, because the pt in the rehab facility she had been in previously had written in his notes that mom was not cooperative - even though she benefitted tremendously from the pt.
is there anything i can do about this?
thanks.
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Hi. I don't have an answer to your question, but I suggest starting a new discussion so more people will see your topic. Click on "new discussion" in the upper right corner of your screen.
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In answer to your hospice comment: hospice is meant to make someone comfortable without invasive treatments such as resuscitation. If you do not agree with that, then, no, hospice is not appropriate. I have never heard of a hospice that did not have that as one of its basic tenets
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