He has a fulminating lesion on the side of his face near his ear. It needs to be removed using the Moher procedure. It is my understanding they won't allow any removal of a skin cancer or other lesion while under their care. Has anyone had an experience with this. That is like saying if you have a cut you can't put a bandage on it. The is very strange.
But I really agree with Pam. If your spouse is ready for hospice then it is important to face that he is at the end of his difficult journey. If you or he is not quite ready to accept that yet, maybe it is best to postpone going on hospice.
I suggest you have a discussion with the hospice nurse and social worker to learn more about their philosophy and rules.
My heart goes out to you. I remember how very traumatic it was to place my husband on hospice. When you are both ready it can be a wonderful help in facing this stressful time.
Palliative care is not the same as hospice. (My husband was on both, one after the other.) The rules are different. I hope you get your information directly from the agency and don't make assumptions about what he can and can't have treated under their care.
There is no requirement to accept either palliative care or hospice care.
If your husband is not ready for hospice then he has every right to continue doing what you and he think is best. You don't have to have hospice. If your husband still thinks he has some fight in him then support him in that.
Hospice is a Godsend for most families who enlist their help. I know they were for us. No more Dr.'s, no more trips to the hospital, no more procedures.....it was a relief to let go when we realized that my dad had had enough.
Hospice care is provided throgh Medicare and many insurance plans or private pay on a sliding scale so if for example you have signed up for hospice and feel strongly you want that tumour removed you can ask to be discharged have the operation using your regular insurance and when you feel the need return to hospice. Things like physical therapy can also be coninued as long as it is in the patients best interests. Going to the ER is strongly discouraged but if for example a patient falls and gets a bad cut they can go to the ER to get sutures either transported by caregivers or ambulance whichever is appropriate.
Part of the problem as with everything else does come down to money. Medicare gives hospice a set amount of money each day to care for each patient and very often just pain meds may exceed that daily allowance. they also have to rent all the necessary equipment and some things like comodes and bath chairs can't be returned so have to be purchased outright. Hospice is prohibited from giving them a good clean and passing on to the next patient.There are so many rules and regulations that a medicare funded hospice has to follow it is a real headache Staff have to be paid and buikldings have to be purchased or rented plus all the incidentals like depends and feed for patients who may have a stomach tube. At the same time illnesses not related to the terminal illness for example someone who is diabetic but terminally ill with cancer can not have their insulin provided by hospice although their nurse can still supervise.
Sherry why not have a repressentative from hospice come out and talk to you and your mother or pay a visit to their office so you can clearly understand what they have to offer. Be aware that some hospices are for profit and others are registered charities. You may find the treatment is more compassionate with a not for profit hospice.Just because your mother is 103 and clearly nearing the end of her life may not yet qualify for hospice care. Ask lots of questions and like everything else if you are not comfortable with the answers don't do it.
Provide a hospital bed and cut off everything else including his doctors. This is not a system I want any part of.
As others here have said, not all hospices work the same. The great people we had for our mom were just that; great. They took excellent care of her. While they did take her off "unnecessary" meds, they also sent people to our home to give her physical therapy. They were not in our home everyday but rather 3-4 times a week and of course were on call. The hospice RN was so good to us all. We felt like Judy was a sister. A sister with amazing knowledge and compassion. Hospice also set us up with a volunteer who came once a week for four hours to be with mom so my sister and I could get out for a little "me time". This wonderful person played cards with mom, sat and visited with her or just sat in the room with her while mom slept.
We now have a different hospice group helping with my MIL, they too are absolutely wonderful. They bathe her everyday and make sure she is comfortable. She is in an ALF and between hospice and the staff at the facility she could not be getting better care anywhere.
Talk to some different hospice groups. I think you will find that there are truly angels out there waiting to help you in this very difficult time.
God bless you and yours.
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