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.
Also, Hospice will provide another layer of care. Many times patients improve and “Graduate “ from Hospice. This is tough territory. Good luck to you.
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.
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.
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!)
I agree with the ones who said call Hospice and have them come out and talk to you. Hospice does not work the same in all states or even in state in different counties. That is what makes it so confusing! So make the call and have the meeting and ask all of your questions so you can make the best decision you can for him. That is really all you can do, your best. Good luck.
We were on hospice for less than a week before he passed away but they came and handled everything, made all the phone calls etc. Before they came, I was doing everything. I was helping him to the bathroom, take showers, eat, all of it. They showed me how to do things in an easier way as well. I would have them come talk to you. They basically said that you can always try it and if you don't like it, you can go off of it.
I am in California and we kept our primary care doctor. He supervised my dad's care and the nurse came out every other day. I know how difficult this decision is but please talk to the hospice rep. You will know in your heart if it is the right decision.
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......
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.
In regards to Hospice regulations. There are federal and state regulations. Here are a few sites to check:
Hospice Patients Alliance
hospicepatients.org/hospic38.html
National Hospice and Palliative Care Organization - as you can see they have developed tools to assist hospice groups with compliance with the Laws & Regulations.
nhpco.org/compliance-laws-and-regulations
Blessings on your search.
But as others have noted, many people wait too long to go on Hospice care, often spending fewer than two weeks on it. A few people have told me that to them, going on Hospice meant that they were "admitting" that they were terminal, or that they were "giving up living." Hospice provides such great services, that I don't understand why people would not use it, given the option, since it greatly improves a person's quality of life for whatever time they have remaining on this earth.
I hear you, it is a difficult decision to make. I don't think any of us want to even hear the word hospice. It feels like there is no hope for a recovery.
The most important thing is to get more help for your husband. Maybe this is just one way to get more home care and more help if he decides to come home. Keep talking to your family and friends and go with your heart. You have to be comfortable making this decision.
Thinking of you. Sending you hugs.
i agree that many wait far too long to call hospice, as it is not unusual for a loved one to die within a day or so of admission if not that same night. The after care is also very comforting if you choose to take advantage of the services offered.
As the loved one has stage 4 kidney failure his life expectancy is probably weeks or less rather than months so opting for this care now is an excellent idea. This is in no way a sign of giving up,it is a way of ensuring the final stage of life is as comfortable and fulfilling as it can be.
We asked my mother's Primary Care doctor to put her in it. She fell, and had surgery while still in the program. She was in Palliative Care at home for 10 months before transitioning into hospice with the same company. The sooner you get into the program the more benefits you will get out of it. We received a medical bed, table, oxygen machine, portable toilet, bed pads, adult underwear, and other things to help us care for our mother. Things got so much easier for all of us, and you can check out of it if you improve.
A word of caution about the company you choose. Keep in mind that the company you choose may determine how you die (should it come to that). We learned that the hard way. Make sure the company provides in home IV pain control. Also recommend going with a company associated with a hospital because it will have a full arsenal of drugs at its disposal should you require medication some pharmacies do not normally carry. If you do not feel the nurse assigned to you is capable of meeting your needs, do NOT be afraid to request another. If you are not satisfied with the company you choose, you have the right to switch to another. If they aren't doing things right in Palliative Care, then it could be even worse should you transition to hospice with them. Do not go with a company just because your Primary Care doctor is associated with it unless it meets the above guidelines. In short, do your research before selecting a company - the quality of your life AND death will depend on it.
Singing in the Church Choir keeps me in the word, happy and very dedicated to caring for mother. We have arranged that I stay with Mother in her 2nd Senior facility in Independent Living a compromise with my brother for now but I would rather be in my home with Mother with me and my son and with our family. At a prior facility, due to a false complaint about me to an abuse agency I am prevented from taking Mother home although the agency found that Mother and I have a great Mother daughter relationship. Take what Katie II seriously. Mother and I went from a rogue facility that forced me out with the help of my Brother, his wife and a Cousin. Mother went from Independence with a few dizzy spells to an invalid, confused, almost died and almost lost her eyesight. I was drug through the mud trying to protect Mother. When Mother's Glaucoma specialist from a leading University documented Mother's declining Glaucoma with pictures and a recommendation that we have an intervention with me giving Mother her eyedrops for three months, and other documentation, we were able to get Mother out of there. They had their hooks into us and were negligent, criminal and abusive. We have been at the new facility for a year. It s just 2 miles away from my home. They are loving, respectful, in a community where my son and I and now Mother are known and respected. Mother has come a long way from her lowest point at the old facility. I do not complain here. When Mother doesn't like the food on the menu, I prepare meals in the room. Mother has high blood pressure and cannot eat hot dogs, bacon (nitrates) and salt and doesn't like ham and pork. I have more trouble with the food as I should be eating organic, fat free, no white flour, no sugar no salt foods. I shop and should cook as much as I can for us but it falls short of how we should be eating or could be eating at home with a full kitchen with all the conveniences and space. The point is. There is nothing like home. MOST IMPORTANT, FACILITIES DO NOT PROTECT AGAINST FALLS. IT WOULD TAKE A PRIVATE DUTY NURSES AID WHICH RUNS $25.00 PER HOUR PER 24 HOUR DAY or a family member staying with their Loved One(like I am doing) for any degree of protection against falls. Resident's fall at even the best facilities. Sometimes they aren't found until morning. Everyone wears a button to call for help if they need assistance. If they fall and are unconscious or don't remember the button, it doesn't get pushed. At the bad facility often Nurses Aids didn't answer calls if they were sitting around the Nurses Station. That doesn't happen here. Be very careful in your decision making that you don't have guilt later on. You are fortunate you have a choice.