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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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Hi,
Consider calling hospice and they will evaluate to see if he qualify’s. It doesn’t mean end of life but, It will help with a nurse coming in and they also have help that can come in along with other services which is covered under Medicare. That will give you time to see if that would be all of the care you need in home and see how things go with the virus.
Its a lot to deal with as I’ve had to make tough decisions in regards to my father. We have hospice and a in home healthcare nurse.
wishing you the best and know your not alone.
Wendy
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Please read and re-read Countrymouse's post: It's copied here for your convenience:

"With bone cancer to think about, there is a clear priority that must be considered immediately;pain management for your husband.

Isn't there a hospice service involved with the decision about where to discharge him?

Hospice can advise you on whether and how it would be possible to guarantee effective pain management at home; and that it isn't possible to guarantee, then I'm afraid your husband and you don't have a choice. He will need to be discharged into a facility where pain management can be administered.

Before the hospital discharge into a rehabilitation facility, if that is what needs to happen, ask the rehab unit to explain to you and to provide in writing, their end-of-life contact and visiting policy. 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 allowed to visit him. Get everything in writing, ..... with Covid19 addendums.

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."
___________________________________
ADD-on--- please consider a full code .... (not having a DNR in place).
Why? because a DNR (do not resuscitate order), is often misinterpreted, which results in ..... horribly uncomfortable things happening.
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Llamalover47 May 2020
OP did reply to Countrymouse. Good Add on!
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Straight to rehab will likely get him the best results and no you won't be able to visit. If he's on the first floor and the correct side of the building, you can visit up against his window. Does he have a phone? The rehab will have one in his room. Yes Covid is a risk, he will be secluded to his room.
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Imho, suggest Hospice because of his cancer dx's.
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Have you considered Hospice?
the fact that he has cancer he would be Hospice eligible.
He cold get some rehab for strength and that can be done at home and once the Therapist has showed you how to do some of the exercises you can continue. but, and I hate to be blunt, is rehab going to help him that much given the advancing cancer? Would not comfort care be better?
On Hospice he can come home, of if he is in a lot of pain the Hospice In Patient unit where his pain can be managed and you can visit until he can go home.

If you think that Rehab will help then you take the chances that he will be admitted to rehab hopefully in a facility that either has all cases of COVID19 confined to one area with dedicated staff or, if such a place exists no cases. But you still would not be able to visit.
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Your husband has little choice but to go to a rehab as you explain in your post. I don’t think you can take responsibility for Covid-19 or your husband’s poor health. No need to feel guilty. Sorry and concerned yes. It’s not your fault. And yes. We all watch the news and know that we are all vulnerable to catching the virus and not seeing our loved ones again.
He is 91 after all. If he needs hospice, home hospice is great but they can't provide daily care. They are only with you a few minutes a couple of times a week. An aide comes in to bath him but no one will be there 24/7. Call and talk with some hospice providers and find out what services they provide.
Again HH for rehab only comes two or three times a week. No one is cleaning, doing laundry, cooking, serving food, administering meds. It’s a lot on your own. Its a very tough time to be elderly and in need of medical care. I think if o were you and could hire help I would bring him home. If not then use the care provided.
I wish you both the best.
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I have a question. What are they going to Rehab? How bad is the cancer in his bones? When my father was dying and the cancer was in his bones, it was very painful to move him. That is why I was wondering what are they planning to do? It seems like that is the medical path now. Hospital then rehab with no thought if it is worthwhile or not.

I agree that he needs a hospice evaluation before going to rehab.

I am sorry that at 91 the two of you never talked about the end of life. Did he ever talk about it at all? Does he have a will, trust? Where will you be financially? I don't wish to worry you more than necessary but please take care of yourself. I have a girlfriend who after her husband died in February, found out he never did the paperwork to take care of her, now his kids are trying to evict her out of her home because he never changed the deed or his will. He also never changed the beneficiary on his insurance. My friend is up that well known creek.
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In response to my post to "Dr. Benshir, How could my mom be in the wrong place when 2 different hospitals referred her there? She was also once in a rehabilitation hospital, and the rehab there was sub par compared to the NH. It was the care, or lack thereof, not the rehab part that was the issue. The last thing I need is more guilt from you. 4 yrs. later and I am still suffering people's failings.

To Dalisuan99, I hope you find the right care for your husband. If hospice is chosen, I had a very good experience with my mom's hospice team. I wish you and your husband all the best.
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You were smart to call EMS. You both would be suffering if you hadn't.

Most rehab hospitals will not accept patients who are at risk for COVID. There are a few who have COVID wards for patients who have recovered but need rehab before they can go home safely. You can easily find out if the facility where your husband may transfer is admitting patients for rehab after COVID. This has to be a locked ward, so that those patients cannot use the same facilities for therapy as other patients. Believe me, any rehab hospital is very cautious about this because it affects the safety of their staff as well as other patients and they do not want the liability.

As for whether or not he should go into rehab at all, absolutely! If he has been medically stabilized it will permit him to come home safely and for you to take care of him with support rather than needing 24/7 hired caregivers.

Bring him home with hospice so that you get physical and medical support for as long as he needs it. This will permit in-home nursing supervision, Medicare coverage towards having a part time CNA for specific tasks, and less physical work for you so that you can provide the love and comfort he needs.
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The only choice here is rehab, the medical determination based on condition and need. I believe any medical professional would tell you the same. Please don't consider or try to rationalize anything else.
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I had two terrible experiences with NH rehab for my mom, and one good one.This after she fell and had a compound arm fracture. It was three Medicare rated five star nursing homes, and only the last NH was good.
In the first one, a stage four tailbone wound occurred that they did not tell me about. She was exhibiting strange behavioral symptoms and it was a battle to get a UTI test....she went into delirium and luckily the doctor was there and she was raced to the hospital a second time. A bad UTI. The nurse at the hospital asked about the wound, and I was shocked as I knew nothing about a wound or bedsore. Needless to say I did not send her back there. The second NH for rehab was a bit better, but some of the staff seemed hostile and one aide dropped mom in front of her wheelchair breaking mom's ankle. Only at the third NH did things go well.All three had 5 star ratings by Medicare. I have guilt issues over four years later about sending her to those first two NHs, and huge anger issues. All this without the covid-19 issue playing in and the excuse to goof off because of that and families not able to see what is going on.
I would first check into home rehab if it is doable, and if not, only then consider rehab in a nursing home.
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DrBenshir May 2020
"NH rehab" is a skilled nursing facility (SNF) and is NOT the same thing as a rehabilitation hospital. The level of care and intensity of therapy are much less. It sounds like your mom was in the wrong place and no one suggested otherwise.
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Talk to the social worker first to find out what kind of help you can get at home. If there's not enough in home health to get with his Medicare or Medicaid, if you don't have enough family help, or finances will now allow for the expense of in home care, you may not have a choice. You can't feel guilty for calling EMS because with the UTI being bad enough for hospitalization, you could not have cared for him at home and it may have reached a point of no return.

When they tell you he is ready for release from hospital, find out what kind of condition is he in. The same as before, much weaker, and how much additional care would you have to tend to alone....or with in home health if that is possible.

So sorry you are in this position. Very trying times we are in right now.
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I can only speak from my experience. I am 76 and I have pancreatic cancer. Last July I had a Whipple operation to remove the cancer and a section of my pancreas plus removal of my gall bladder, part of my stomach and my intestines. I spent 10 days in the hospital and was transferred to a rehab center. This was a nightmare. The rehab had no food I could eat so my daughters brought in jello and applesauce and broth. Finally after 5 days I was so weak I called my husband who had just gone home, 140 miles away, to check on our livestock and told him to come get me. The first 48 hours in the rehab no one examined either doctor or nurse. My daily medication was not given to me as scheduled ( we had to ask and finally insist to receive heart medications). At home it was wonderful. One of my daughters quit her job and moved in to take care of me. We had in home nurses and physical therapist and I thrived. I am in remission with my cancer and feeling great. I was very healthy before my surgery and physically very fit. I know my situation is not the same but in home care worked well for me.
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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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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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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 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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Thank goodness you called EMS and got him into the hospital for care.

Talk to his caseworker and social services at the hospital. Tell them your concerns. They can guide you in learning how to care for him at home, preferably with home health care aides.
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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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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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You should have him removed from the Hospital and brought home immediately.

Your husband would be much better off in failure settings.

He will just become more confused all alone.

He will get much more rest at home and it would be much safer for him.

They have all sorts of Home Health Care help.

Medicare will provide a Nurse to do his once a month Cathiter change.

Health Aides to give him a Bath.

Even will have Therapist come in.

I do this with my 95 yr old Dad so he could continue to stat at his own home.

The UTI can be cured with antibiotics pills at home.

In Hospitaks, they run wat too many unnecessary tests and they disturb you while taking your blood every day.

It is Very Dangerous for your husband to be in the Hospital, especially at this time.

NI one loves or will keep an eye on him like you would.

If it is his time to go, he would much rather be home.

You can sign him up for Hospice Care and they will keep him comfortable at home.

Put yourself in his shoes, would you rather be in the Hospital or at Home,?
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DailyDilema May 2020
bevthegreat. Your post really hurt my heart. While you may be trying to help, that felt like a very hurtful response. Please be kinder to folks on this post. Saying things like "he would rather be at home" or "would you rather be in hospital or at home" really is a kick to the guts for someone trying to consider their options. What's right for you may not be right for them and just talking through options without judgement could save someone a lot of heartache. If bringing him home puts one of them in danger, she has to live with the consequences of those decisions, not someone on a blog
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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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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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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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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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