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My 91 year old husband has advanced prostate cancer that is now in his bones. This past week he had a 101 fever and was confused and weak, so an ambulance was called. He is now hospitalized with UTI, and it is causing extreme disorientation and delirium, from what I can tell during difficult phone calls.
His temp keeps spiking up and then down, and even before he went in, he was sick, tired, struggling to walk, incontinent and in pain. The UTI episode compelled the hospital stay, and now, he may need post-hospital rehab...but with the COVID pandemic, I can't visit him and have not seen him since admission, and they want him to go straight to rehab once discharged, where I won't be able to see him for at least another few weeks. I'm scared. I know he is getting good care, but will he contract coronavirus in rehab? Or will he get worse, or pass away in rehab before I can ever see him again? I worry. And I want him home, but I can't care for him alone and the level of care required may be very costly or simply impossible in a home environment.


How do I begin to plan and decide what is best for him? I already feel guilty for this, and am unable to think clearly. I know I had no choice but to call EMS, but, now what do I do? Dalisuan99

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With bone cancer to think about, there is a clear priority far away ahead of everything else and that is pain management for your husband. Isn't there a hospice service involved? They can advise you on whether and how it would be possible to guarantee effective pain management at home; and if the truth is that it isn't possible to guarantee it then I'm afraid your husband and you don't have a real choice. He will have to be cared for somewhere it can be done.

Before the discharge to rehab, if that is what has to happen, ask the rehab unit to explain to you what their policy is regarding end of life contact. I believe, though I'm sorry I can't be sure, that if your husband were to enter the "actively dying" phase you would be enabled to visit him.

This is an awful time for both of you, but there's no place for guilt in it. You did not do any of this. Wishing you comfort, please come back and let us know how you're getting on.
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Dalisuan99 May 2020
Thank you for the perspective... the idea of handing my husband over to a care facility for the foreseeable future is what concerns me the most (in addition to being concerned about his overall demeanor and emotional well-being). It has been a struggle to communicate with him via phone as he is hard of hearing, is mumbling, a little disoriented and weak. He can't use a smart phone so I can't see him. Sigh. He is 91 with comorbidities, and we have not had opportunity to discuss his end of life wishes. We got to the point so fast, and I need to know what's best for him now. this is so difficult.. the doctor says to give it more time, and he may become more lucid... I just want him to feel comfortable, not in pain and able to communicate and share in his healthcare decisions.. thank you CountryMouse.
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He has bone cancer and she is not able to care for him alone. He needs to be evaluated by hospice first. There may be a hospice unit he could go to. I don’t disagree that in normal times, he would possible be better off at home but this lady sounds very stressed with talking care of him. His pain management is going to be an issue soon if not already. And home care agencies are very short staffed.
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I'm so sorry you're going through this. Do not feel guilty. He has cancer. You did not do this to him and you certainly don't have any control over the Covid virus that is keeping folks from seeing their loved ones.
You are correct, in home care is terribly expensive and most insurance will not cover 24 hour care ($25 an hour is the cost in Texas).
Because he has advanced cancer and a UTI that is causing hospitalization, he needs hospice. I'm sorry to be blunt, but the social worker at your hospital in charge of your husband's case can help you not only find a place for him, but arrange hospice care for him. Hospice people are angels on earth! Once he is transferred to a rehab facility, they can help you be in touch with him via phone, text, Facetime or Skype.
Again, I'm so very sorry you're going through this and feel so badly that you can't be there with him.
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Cascia May 2020
I have been FaceTiming with my dad in rehab but really it's. only a few minutes and its very hard to determine the care since you can't visit. daily the social worker calls and the PT to tell me everything is ok but no-one bothered to tell me that he had soiled clothes in the room. When I called last night they said that family come and pick up clothes every other day however this is my first experience with this and this was very distressing, he told me his the previous night and said the room smelled but I thought he was drugged up and confused since they told me he was cleaned up. the whole experience is overwhelming for me right now.
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I have been through much of what you are experiencing in the past two years. I have to say that I am grateful that the journey ended before COVID began. That complicates every decision you make x10. I will not attempt to advise you how to care for you husband. It is too complicated. However you can, find your calm. This is hard. Even if you do something as simple as focus on your breathing while you put on hand lotion that smells nice, that can help. Seek help from others as much as you can. Send your husband love in any way you can. Above all else, realize that you are doing the best you can in every moment. Inevitably, you will look back and think that you could have done something better. But you can have compassion for yourself because you are in a very tough spot and are doing the best you can in a complicated and painful situation. Much love to you!
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Dalisuan99 May 2020
Thank you. Thank you.
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In a similar situation with my elder father. Have they given you a time estimate of how long he will live and what future stages he will most likely experience over what time? Write down all the pluses and minuses of the different options, including costs. Be aware of with which hospice service you talk to. All are not the same. Some offer services that others don't. Make sure you have a list of all his needs and in the future. He can have hospice at home or at rehab. Does the hospital have a homecare program? Despite all his ailments, he seems like once over his UTI, he will be much healthier at least for the time being.. Try to imagine him at home, what it would like. And of course try to get any input from him. When his infection is over, would he be able to toilet himself? Shower? Eat? See how he is after this infection is over. Try to buy time with the hospital so you can gather more information. Try to find out why they want him to go to rehab, what can rehab offer that homecare cannot? How is the level of COVID 19 in your area? Have any care facilities been affected? The situation is like juggling in the dark, and quite difficult for the average person to deal with. But don't let it all drive you crazy. It sounds like you are weighing the options well and are quite the loving wife. Try to imagine this; If the situation was reversed, with you having the bone cancer and UTI, what would you want your husband to do for you? Home? Rehab? Hospice. I think we are all praying for you.
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Judysai422 May 2020
Agreed. If husband has living will or advanced directive, please follow his wishes.
My mom had excellent in home rehab care in Tucson, AZ through Bayada. The doctor at the hospital was miffed we did not follow his advice to go to in patient rehab, but we had been down that route before and it was a disaster. Plus, at 92 years of age, she never followed through on exercises once she got home and she was miserable in rehab.
If you go the hospice route, there is no rehab, just comfort care. My now 93 year old mom just fell and broke her hip. If she had been a candidate for surgery, they would have put a pin in her hip and returned her to AL with my dad, but no rehab. As it is, she was not able to have the surgery, so she went to inpatient hospice where we CAN visit her in spite of Covid19.
Listen to the professionals, but make your own decision based on what your husband's wishes are and what you can safely do. This is not an easy decision. I hope you have family who can help.
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He could get in home care thru Medicare if PT is needed. But, its not a 24/7 thing. You would still need help. Hospice if done at home you would also need help because they aren't there 24/7.

Hopefully some of these restrictions will be lifted and at least spouses and children will be able to see LO. I think for now DH needs rehab. Unless you can afford round the clock care of at least an LPN. Aides are limited with what they can do medically.
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Bless you, Ceecee65. I feel so very much alone in having to grapple with this current situation with no support (his adult children live far away and do not even communicate with eachother well). Intellectually, I know that where he is now is good for him, and that rehab and/or hospice would be best going forward. It is simply very hard to admit that we have come to this. thank you so much.
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I am in a similar situation - I had to send my 87year old dad to the ER two weeks ago, and now he is in rehab. It's incredibly difficult he is not getting much better and I am looking at him coming home next week. My 84 year old mom was doing much of the car and now I need to find some private aides quickly because although we will get aides I think he will need more care. It's only me dealing with the whole thing and I am about to reach my limit. It was a hard enough decision to put him in the ER and then to rehab- I would prefer him at home now but I don't know how the two of us will handle it.
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Hi Dalisuan99.
You are in a difficult situation. I can't advise you on what to do, that of course is your decision.
I suggest that you have a list of questions for the social worker.
Including:
What services are available for inpatient hospice? Versus at home hospice?
What are the options for inpatient rehab? Could you take your husband home at any time?
Is his oncologist involved with his hospital care? What is his advice?
When you know what your options are, I suggest you talk directly to the possible facilities.
I would find out if a first floor room is available, so you could "visit" through the window

These decisions are made very quickly with a short turn around time. Do you know his rights under Medicare?

I can tell you that in home care is limited. Make sure that you know what care your husband will receive, but you will be responsible for most of his care, unless you hire someone .
Best wishes to you and your husband and make sure that you take care of yourself
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I am so sorry that you are facing and experiencing such a difficult situation. In my part of the country, there has been a higher incidence of COVID in skilled nursing facilities and assisted living. Some facilities are not admitting new patients from hospitals or the community due to the pandemic. The fact is due to your husband's advanced age and underlying medical conditions, he is at a higher risk to contract the virus. If he goes to skilled nursing for rehab, he will receive 5 to 7 times a week therapy. If he returns home and receives home care, he will receive 3 times a week therapy. Have you asked the physicians his prognosis? Another question is can he tolerate as well as participate in therapy due to his condition? What the hospital wants is the safest discharge for his situation. I think that you should speak with the hospital social worker to determine if skilled rehab is available to him due to the pandemic. I would also suggest that he be tested for COVID prior to discharge. Bear in mind you need to stay safe too. Good luck.
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Dalisuan99 May 2020
Has tested negative after having had two COVID tests. Thank you for the honest advice. The hospital's social worker has helped a great deal with details for home hospice. this is what we have decided..thank you and god bless.
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