I have had experience with both home hospice and a hospice facility. There was a lot of personal care required with home hospice. We were happy and financially able to do it but I think the hospice facility gave us and our loved one a much less stressful experience. The caregivers we hired to supplement the home hospice visits were of varying quality....from angelic to clueless. Re: morphine. It is a common misconception that hospice deliberately speeds up death with morphine. Morphine does nothing but help the patient be more comfortable. It is not hastening their death. But what can you do? People believe what they believe. Good advice to have conversations with the whole family ahead of time so everyone is on the same page.
In addition to what has been said, if there are other family members who will be involved, I think it would be a good idea to have a family meeting to discuss what your loved one wants as far as advanced directives and pain management as well as how your loved one will be cared for. I also think it would be a good idea for everyone involved to meet with the hospice team so that everyone is on the same page. In my MILs case, we never had a family meeting. No meeting with hospice. We have a medical POA. The problem her long-time boyfriend is her primary caregiver and he thinks hospice is euthanasia and it appears he has told her that the morphine provided by hospice is going to “speed up the process”, he also thinks hospice speeds up the process. His goal is prolong life as long as possible despite my MILs obvious suffering. She’s got pulmonary fibrosis and she’s coming to the end. When her oxygen levels drop extremely low, he will not give her morphine, he just sits with her while she struggles to breathe. I really feel that if we had gotten together—or at least my husband and his siblings—when it was time for hospice, and discussed everything with MIL and hospice and designated one of the kids to be in charge and oversee, that things would be very different right now and she would actually be receiving comfort care from hospice. Right all she gets is a cleaning 3x a week from a home health aid and a nurse comes twice a week and takes her vital signs. Had it been up to me, we would have talked to MIL, we would have asked her if she wanted to use medication to control her symptoms, she would have been given information from the nurse about what the medications are and what they will do, about how hospice care works. I really don’t think she got any of that. Her partner did not want hospice and put up some resistance. Our experience has been eye-opening and I think thinks should have been done differently.
YES! Both my father and my husband have received Hospice at home. Neither went to the hospital to pass on. Hospice called the Funeral Home and attended to everything at the end. They were totally awesome and I would have been quite lost without them.
One can also received hospice services in a skilled nursing facility. If you don't have enough people to help you care for your loved one in your home, and you can't afford to pay for hospice in a hospice facility, you can get a hospice agency to supplement comfort care for your loved one in a nursing home. I did this for my mom. She was already a resident there. When she got to within 2 or 3 days of passing, they were able to move her to a private room.
Since she has had a stroke and if there are other diagnosis that you or her medical team have. Hospice maybe able to come in and help. Keep in mind Hospice is used primeairy in end of life care. If she's not approaching that there are agencies like visiting nurses that can help assist with bathing and what have you. If your loved one is terminal hospice can help.
Frist, one thing you absolutely should do before calling hospice companies is to make a list of your wife's conditions, and ask specifically if their nurses can treat for that.
I.e., failing a swallow test suggests she's dysphagic, and won't be able to eat food that isn't pureed and liquids that aren't thickened. Ask if the home health aide can puree the food, and if they have aides who are experienced AND knowledgeable of dysphagia.
I asked that of private duty caregivers (not hospice staff) and found that aides either didn't have experience, knew about it but didn't have experience, had limited experience but didn't know the differences between levels of dysphagia, or outright refused to do it.
If you can't get help with that, you'll have to learn how to manage a dysphagia diet yourself.
Secondly, I would contact nonprofit hospice companies. In my search, I found that there's a world of difference, in flexibility and in compassion. I'm not religious but found that the Catholic facility and staff we had were far superior and helpful than any of the commercial hospice companies (some of which were just downright arrogant).
Echoing the others above, blancito, yes! Her doctor will first have to prescribe or order hospice attesting that her life expectancy is six months. My mom, who passed away last month, was on home hospice. They were all fantastic and all paid for by Medicare. They brought up installing a catheter for Mom as getting her up and to the toilet was getting harder on all of us. Supplies, such as pull-up Depends (before the catheter) and some of her medicines they paid for (saving her a lot of money).
They even brought in a hospital bed so we could easily get her to sit up and raise her feet, and raise and lower the bed depending on what needed to be done. A nurse came twice a week to give her a bath (and in Mom's tiny bathroom--not an easy feat). They brought in Mom's priest and we had a chaplain visit--who I had to tell my own troubles to and helped me enormously.
Their patient advice, even the virtual "there, there", and listening helped all of us.
I'm sorry you're going through this with your wife. May hospice help bring her and you peace and support.
Yes, you can have home hospice. However, if you can afford it, a free-standing hospice gives 24 hr care. Yes, hospice itself is covered by Medicare, but room and board are not. Since your wife cannot swallow, there won't be much "board," so perhaps you can negotiate that. My late husband could not swallow and lived for two weeks following his stroke, getting mouth care, a catheter for urine, and a few enemas in the beginning. Someone checked on him every few hours. He and I had time in the beginning to talk about his wishes--NO feeding tube, which hospice does not do anyway. I certainly hope that my own passing will be carried out in the same loving and caring way. I could not have managed with home hospice, but some people do.
You’ve been given very spot on experienced advice. I’d like to add that hospice is a MediCARE benefit. As it’s MediCARE it’s considered self-directed, that is your wife (you as her spouse or MPOA) can choose which hospice. You can speak to more than one and select the one that seems the best “fit”.
You can change hospice provider if need be. I did this for my mom who shattered her hip and became bedfast & met the criteria for hospice while already living in a NH. The segue way from provider 1 to provider 2 was very straightforward and done within like 3 days from my written (faxed) notification to old hospice group after I’d selected the new one & the new hospice group provided a RN for the NH care plan meeting set for the next day. My mom was on hospice 18 long, l...o...n..g months, hospice was amazing for her and for us her family.
Hospice is WHERE EVER the patient resides. I had Hospice for my Husband for just over 3 years and he remained at home. I have friends there spouses were in an Assisted Living and they had Hospice.
You will have a team of ANGELS that will help you and your Wife. Typically you will have a CNA if you want one, a Nurse, a Social Worker, a Chaplain if you wish to take advantage of that as well as volunteers that can come in and give you a break. And a wide variety of therapists that can help make her comfortable music therapy, massage therapy, and a few more. You will get supplies and equipment that will help with her care. As the saying goes..many hands lighten the burden... Not that I ever thought caring for my Husband a burden but just having help made my life possible. Not to mention making his comfortable.
The only suggestion I have for you is to call a couple of Hospice, unless you know of one by reputation, and "interview" them just like you would any Doctor, or other professional. There are 2 types of Hospice Not for Profit and For Profit. The one I had in was a Not for Profit. I do not know if his care would have been different but I never had any reservations about the care he got, the help I got. Hugs to both of you!
Re: morphine. It is a common misconception that hospice deliberately speeds up death with morphine. Morphine does nothing but help the patient be more comfortable. It is not hastening their death. But what can you do? People believe what they believe. Good advice to have conversations with the whole family ahead of time so everyone is on the same page.
Frist, one thing you absolutely should do before calling hospice companies is to make a list of your wife's conditions, and ask specifically if their nurses can treat for that.
I.e., failing a swallow test suggests she's dysphagic, and won't be able to eat food that isn't pureed and liquids that aren't thickened. Ask if the home health aide can puree the food, and if they have aides who are experienced AND knowledgeable of dysphagia.
I asked that of private duty caregivers (not hospice staff) and found that aides either didn't have experience, knew about it but didn't have experience, had limited experience but didn't know the differences between levels of dysphagia, or outright refused to do it.
If you can't get help with that, you'll have to learn how to manage a dysphagia diet yourself.
Secondly, I would contact nonprofit hospice companies. In my search, I found that there's a world of difference, in flexibility and in compassion. I'm not religious but found that the Catholic facility and staff we had were far superior and helpful than any of the commercial hospice companies (some of which were just downright arrogant).
They even brought in a hospital bed so we could easily get her to sit up and raise her feet, and raise and lower the bed depending on what needed to be done. A nurse came twice a week to give her a bath (and in Mom's tiny bathroom--not an easy feat). They brought in Mom's priest and we had a chaplain visit--who I had to tell my own troubles to and helped me enormously.
Their patient advice, even the virtual "there, there", and listening helped all of us.
I'm sorry you're going through this with your wife. May hospice help bring her and you peace and support.
I’d like to add that hospice is a MediCARE benefit. As it’s MediCARE it’s considered self-directed, that is your wife (you as her spouse or MPOA) can choose which hospice. You can speak to more than one and select the one that seems the best “fit”.
You can change hospice provider if need be. I did this for my mom who shattered her hip and became bedfast & met the criteria for hospice while already living in a NH. The segue way from provider 1 to provider 2 was very straightforward and done within like 3 days from my written (faxed) notification to old hospice group after I’d selected the new one & the new hospice group provided a RN for the NH care plan meeting set for the next day. My mom was on hospice 18 long, l...o...n..g months, hospice was amazing for her and for us her family.
I had Hospice for my Husband for just over 3 years and he remained at home.
I have friends there spouses were in an Assisted Living and they had Hospice.
You will have a team of ANGELS that will help you and your Wife. Typically you will have a CNA if you want one, a Nurse, a Social Worker, a Chaplain if you wish to take advantage of that as well as volunteers that can come in and give you a break. And a wide variety of therapists that can help make her comfortable music therapy, massage therapy, and a few more.
You will get supplies and equipment that will help with her care.
As the saying goes..many hands lighten the burden...
Not that I ever thought caring for my Husband a burden but just having help made my life possible. Not to mention making his comfortable.
The only suggestion I have for you is to call a couple of Hospice, unless you know of one by reputation, and "interview" them just like you would any Doctor, or other professional. There are 2 types of Hospice Not for Profit and For Profit. The one I had in was a Not for Profit. I do not know if his care would have been different but I never had any reservations about the care he got, the help I got.
Hugs to both of you!