He has had repeated falls recently. He uses a walker most of the time. Doctor is recommending home hospice. I am not sure he's at the end yet but doc says he's on decline. He says he will forget the walker & fall. Concerned that he will be on path to repeated falls, hospitalization and rehab. If I do hospice, I give up primary care doc and any chance of rehab for falls. I am torn about what to do.
I felt bad about giving up my husband's outstanding doctors. But they were outstanding because they worked diligently on fixes for whatever came up. Once you decide you are not going for "fixes" anymore, then their role disappears and a doctor with a different focus is appropriate.
Ask how to go off hospice if you wanted to change your mind and send husband to the hospital should he fall. Posters can tell you of their experiences with hospice but you need to know what the hospice you would actually work with has to say.
Come back and let us know what you learn.
Also, Hospice will provide another layer of care. Many times patients improve and “Graduate “ from Hospice. This is tough territory. Good luck to you.
The concern is depending on how severe the dementia is at that time is:
1. Will he tolerate surgery including anesthesia well.
2.Will he tolerate a hospital stay and then re-hab facility stay well?
3. Will he be able to participate in the re-hab? How well will he follow directions?
4. How well will you be able to handle a spouse that will have more limitations once he is back home?
Once back home he can go back on Hospice.
A friend of mine had a similar experience. Her husband was on Hospice, he fell out of bed at the Memory Care facility he was living in and broke a hip. Off Hospice for surgery. Back on Hospice once he returned to the facility. He was not able to participate in re-hab so he was pretty much chair bound at that point, he had been prior to the fall and surgery as well so this was not new.
The main reason for going off Hospice is that the Hospital will bill Medicare for services as would Hospice there can be only one payee for services at a time.
Call Hospice and have a good "interview" with them and find out all that you can about what can and can not be done, what they will and will not do. Keep in mind there is not just 1 Hospice just like any business there are several in most areas. There are "For Profit" and "Non Profit" Hospice Organizations. (personal note..the Hospice that cared for my Husband was a Non Profit and I could not have been more pleased with the care he got, the care I got. the dedication that everyone has is amazing from the CNA, the Nurse, Social Worker to the Chaplain, all were outstanding. I/we got supplies, medications and equipment all within a day sometimes within hours of it being ordered!)
Why had he not mentioned this before? Surely he could see Mike was in terrible shape and I was exhausted. Taking him 60 mi. for an appointment that day, getting his very heavy wheelchair out of my car and him in it was excruciating. I called a friend with Hospice experience and got a referral as soon as we got home. They arrived within a few hours. We had nurses, Chaplin, social worker, folks delivering equipment, etc. I have never been so relieved in my life and Mike felt much more secure. It was like hosting angels for the 3 days before Mike died. Even after he died they checked on me periodically for weeks/months.
I wish the doctor had mentioned it much sooner. I would have been in much better shape to handle everything I had to handle that followed.
Hospice benefits are at no cost to you and will provide whatever equipment and supplies your husband may need. Whether it is a wheelchair, hospital bed, potable oxygen, Rx delivered to your door etc. They also provide music therapy, pet therapy, social worker, support services for you and your family not just your husband.
You can also keep your primary care physician if you prefer and switch if/when you feel comfortable. Your pcp can refer you to several and you choose the hospice company you feel is the best fit. I hope this has helped a little in answering your questions. Please remember to take time for you and to take care of yourself as well. Blessings to you.
But, in answering your question, I think it would be best to sit down and talk with Hospice......
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