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
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.
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.
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.
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,?
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.
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
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.
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.
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.
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.
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.
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.
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.
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.
"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."
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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.
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