My husband was diagnosed with CHF in May 2018. He was referred to hospice care and was found "eligible" immediately. However, even in light of his heart disease, his meds seem to be stabilizing him. He is able to do his personal caring still (dressing, bathing, eating, etc.). His cardiologist just told us that he can no longer perform "curative" procedures on him. What baffles me is that I am his primary caregiver, and we seem to be "stuck" and confused. No prognosis was mentioned, and we understand that he can remain static (stable) for quite a long time. I can already feel as though hospice has left me with the daily responsibilities of caring "as though" I will prevent falls, minister the correct comfort meds as needed, keep him comfortable at all costs. If he were to get any more comfortable, we both will fade into oblivion. He doesn't have the energy to do lengthy trips to the mall, or neither is he interested in hobbies, initiating visits from other family members, and remains fixed on sofa, watching TV, surfing on his laptop.
Should we reconsider hospice care and return back to making decisions about medical help, appts, etc?
Thank you for some helpful advice. My husband is 91 and I am 70.
Do you want to persue other treatment options? You are perfectly free to do so but must discharge your self from hospice first. They will re admit you when you are ready.
The things you describe that hospice expects you to do are pretty standard. Each patient has to have a primary care person who will just generally take care of everything. Hospice will send in a bath aide several times a week if the two of you can't manage and they have volunteers who will come and keep you company. A RN visits at least weekly and when necessary. There is always a RN on call for emergencies or just for simple questions.
What exactly were you expecting from Hospice? What you are getting is pretty standard.
If you find caring is too exhausting get some help and be sure to make some personal time available. Some Hospices actually have an inpatient facility which can be a God send when the disease progresses..
Talk to the RN or Social worker when they visit and you may get a clearer picture.
As I understand it, people are usually accepted for hospice care when their life expectancy is six months or less (though that's not an absolute criterion, as many posters have described). Without a prognosis at all, it seems odd that your husband is "on hospice" as such. You are - or more especially he is - free to revisit the hospice issue if you want to confirm that he is getting the most appropriate services for his needs.
But the distinction between palliative and "curative" or active treatment makes more sense. CHF is not curable, and the more aggressive management options have been ruled out for your husband. All the same, his condition is being managed, his symptoms are being treated, and would you agree that all in all he is doing well? So perhaps, if it's working, better not to fix it..?
This link takes you to a brochure with lots of advice on living well with heart failure, from the American Heart Association. I think you can order one personal copy free of charge, but check before you click!
https://www.heart.org/en/health-topics/consumer-healthcare/order-american-heart-association-educational-brochures/living-with-heart-failure-brochure
In any case:
If you're not clear about what is supposed to be happening or what the plan is, always ask.
If you don't feel like rapping out "what's the prognosis, doctor?" then another way to put it might be "what can we expect to happen now?"
You must take care of yourself if you're to take good care of your husband. If you need respite breaks, extra help in the home, whatever it takes to keep your life ticking over, reach out for it.
If you don't feel you need Hospice, then stop it. No one says you have to use them. If your husband declines, then you can call them back in.