Ivylad’s father is dying. He has six months to live, and the doctors don’t think chemo will do any good.
I need to know what hospice is, what it does, and if it would help out Ivylad’s mom. I have a vague idea that they provide nursing help so the caregiver can take a break, and I found a website for a hospice in our area, so I will pass along the information to my MIL.
Anyone have experience with hospice? Pros, cons, would you use them again? What should we expect?
We had a lady at church who used hospice, they were wonderful for her. At some point, no matter how much friends and family want to and do help, you need outisde help and paying for it is generally unrealistic. The hospice people were so caring and friendly. And even in the best of families, it can be a relief for the person who is sick to have an outsider in attendance, for they often want to keep the illusion up for family that they are doing better then they are.
It was a while ago, but I seem to recall that they didn’t cook, or do much cleaning, but they would read, talk, or other things attending directly to the patient. (wish I could remember more)
I’m thankful for your MIL that you care enough to take the time to investigate ways of helping. It can’t be easy for any of you. (please understand that no offense is meant by saying this> I will be praying for you. )
Ivylass, my condolences to you and your family. Dealing with cancer in family members is the most emotionally draining thing I’ve ever done, so I have some idea what you’re going through.
I lost my 56 year old brother to cancer on Thanksgiving 2001. He was under hospice care at home the last few months of his life, and it made things much more bearable for my sister-in-law and niece. The particular type of hospice care available is going to vary widely from place to place, so talking to your father-in-law’s doctors and other medical professionals is a good place to start in assessing how to go forward. Cancer survivor and family support groups are also a good resource.
In my brother’s case, the hospice workers helped with tasks such as bathing, monitoring meds, taking vitals, giving the family short breaks away, etc. During the last few days of my brother’s life, the hospice workers were there much more frequently, and were very forthcoming with information about the expected course of events. As hard as it was to hear this information, it also removed some of the uncertainty, allowing us to begin to deal with the reality of imminent death. At the end, after my brother was in coma, knowing that this was the end allowed friends and family to gather around and begin to mourn his passing and celebrate his life while he was still with us. Compared to my father’s death in a VA hospital 20 years ago (also from cancer), it was a blessing.
One thing that may vary by hospice program is when the patient is eligible for the care. In my brother’s case, chemo was not effective, and he was on palliative care only when hospice came in.
My prayers and good wishes for you and your family.
Hospice services come in two forms: in home, and institutional. My experience has been with in-home.
Institutional hospice is like a cross between a hospital and a nursing home for the terminally ill. Usually the rooms are made to be home like, and the caregivers try to be less detached than the run of the mill hospital staff. The idea is to make the patient feel at home and at ease.
In-home is just that. The hospice staff comes in on a regular basis for medical and patient care stuff, and also someone else not medically would come in weekly to help around the house as needed (cleaning, running errands, etc.) In-house requires the family to be the day-to-day caregivers. My sister and I got to be pretty good with seizures and valium, morphine injections, and flushing IV locks.
The hospice took care of making sure the meds were prescribed and up-to-date, and the auxilliary supplies such as surgical pads and tape, and some durables like oxygen equipment. The bed was not covered. They did have some pretty strange rules, such as never calling the ambulance and going to the ER without their direction, even if it was for something unrelated to the disease like Mom falling out of bed and breaking her arm. To do so would void the coverage contract.
If IvyMiL doesn’t have the constitution to deal with medical stuff and the stress of a dying family member, then I don’t recommend in-home hospice care.
I don’t like hospices for the same reason I don’t like funeral homes, but the care was great that Mom got. If it’s covered, go for it.
Well, there is Hospice where people come to your house and give you a break for a few hours a day, and then there is Hospice where the patient is taken to… well, basically die. I’ve dealt with both kinds, and it was, despite the awfulness of the situation, a positive experience. With the first kind, the people spent time with my dad and took care of everything while we got away for a few hours. They were the most unselfish and kind people I have ever met. I couldn’t do what they do. My dad lingered much longer then “normal” and he had no less then 5 hospice volunteers that loved visiting with him. They got attached to him and he to them. They all came to the funeral.
His last week alive, we were forced to take him to a Hospice center because we could no longer care for him. I know that my mother still blames herself for taking him there because she promised him he could die at home. Honestly though, he died with dignity there and they did everything so we could spend time with him without distractions. It was, I think, a good decision.
I am at work otherwise I would write more. I’m sure I’ve left a lot out, and if I think of anything else I will post more later.
Hospice is as much for the survivors as it is for the patient. My mom did institutional hospice. They cared for my mom but didn’t do anything to prolong her life. They made her comfortable, and comforted us when the sorrow was nearly unbearable. When it came time, they administered the opiates so there would be no pain (and also no more consciousness).
My FIL is in at-home hospice now. The nurse and aid come four times a week. They check his vitals and his death progress so everyone is aware of what is going on and what to expect. When the time comes, they will be there 24/7 to lend support to all of us. Hospice is a wonderful organization. It provides a dignified means to the end of your life. I highly recommend it.
My family’s hospice experience was less positive than most, but for the most part I’ve only heard good things about in-hone hospice.
In the case of my family, my father was dying of lung cancer. Hospice only comes when all treatment options have ended and basically all that’s left is for the patient to die. Hospice was good with things like bringing medications or ordering equipment that became neccesary has my father’s illness progressed. They did sort of routine medical care - taking temps, BP, answering questions. They never stayed very long, certainly not long enough for my mother to get out of the house. It may be in part because we have a large family and were involved directly with his care, because the more the family can do, the less hospice does. That’s not bad, perhaps, but it sort of forgets that we weren’t medical professionals, we were people watching someone we love die by inches. One time, when my father’s breathing was so shallow that she she couldn’t detect it and she thought he’d died, she called the hospice phone number. It was on a weekend and their response was, “You have a sheet there that tells you what to look for in the case of death. Check him again and call us if he’s dead.” For the last couple weeks mother hired a nurse out of her own pocket to help. When he did die, the hospice people came, but all they did was collect his meds and dump all the pain meds down the toilet and leave. Still, they were better than no help at all, and as I’ve said - many families have had a very positive experience with them.
My condolences for your family. I hope the end is quick and pain-free.
Hospice is the only time I have ever seen physical proof that angels do exist.
What these people do is nothing short of showing true compassion and care for the dying and their survivors. They truly have a calling to do that for a living. They offer counseling for the survivors which is critical for many and they can come to your house so that you feel more comfortable and less uptight and more likely to open up and unload. YMMV.
I beleive Hospice does not charge the family for their services and they either exist entirely on donations or a donations & bill to medicade/insurance situation.
JohnM has already touched on an aspect that does not get mentioned enough: hospice (if done well) helps prepare both the patient and the family. Nothing can completely prepare one, of course, but they should provide information about the progress of the dying so that people are not caught in shock when something new arises. (If really good, they may actually help the patient and family prepare for many of the psychological issues–anger and lashing out, or despair, depression, and withdrawal, etc. As tough as those are, even they can be better dealt with if a person realizes in advance that they may suddenly be overcome by an unexpected emotion or that another person’s “unfair” or “unreasonable” actions or words may be driven by grief, not malice.) Making preparations for burial (and organ donation) and issues such as living wills and distribution of property are not directly under the purview of hospice, but they often have literature that will help the family find other help for those services and they often have direct contacts that they can provide.
Deb is currently a hospice nurse. The only times that she has encountered people who “could not” be helped has been when an apparently healthy younger person has come down with a terminal illness. Even then, usually there is some comfort (although the “unfairness” aspect interferes sometimes).
My 6 year old daughter lost her battle with cancer a year ago. Hospice was a wonderful change from hospitals. Our nurses were more than helpful with everything.
We did have to sign a DNR. Hospice is for those ready to die, but with dignity.
God Bless you and you family.
Both my Uncle and Grandmother had hospice care before they died. My Uncle’s was in-home, my grandmother’s institutional. Both were great(well, as great as that situation can be). They recieved top notch care, and it really helped the family not having to watch their conditons worsen in a hospital.
My mother is a Hospice nurse. What she does from patient to patient depends on the situation. If the family is strong and supportive, and there are a lot of people to help take care of the patient, she mostly dispenses medicine, helps take care of caths and I.V.s, and does those things that the family cannot do. If there’s only one caregiver, and they’re having a hard time, she’ll do her best to come in and sit with the patient, or arrange for aides to come in and help with bathing, to give the caregiver a break. If a family is having a hard time coping, she tries to talk them through it. If a caregiver is low on supplies, she’ll do her best to get them. If a doctor won’t listen to a caregiver’s concerns, she will go after said doctor with a 2x4. Should an emergency come up, she will do her best to handle it. This is her job, and she does it well.
It’s important to note that all Hospice nurses have constraints. They may have many patients, or a few patients spread far apart, which can make scheduling tough. They might have to deal with an uncooperative doctor. They will more than likely have to struggle against Medicare or the insurance provider - my mom’s had a few notable struggles with the VA. They can’t take care of everything. However, most of them do the best they can with a singularly difficult job, and they really can be a tremendous comfort to the patients and their caregivers. I really do think Hospice is a marvelous thing, and I’d definitely recommend it.
When my mother was in her final months we used Hospice at home. What I found most useful was the ability of these people to make things happen instantly. “Small” things like a bedside commode would appear without having to think about it. Problems with drug stores were resolved by the store driving the medicine to her house (apparently Hospice had purchase leverage).
Also, by using Hospice it is easier to make immediate changes to pain medication which gives some sanity to the physical act of death. Can’t even imagine what it would have been like without these people. I don’t know how someone can deal with unending tragedies but they do it. God bless all of them.
I’ll echo Tomndebb and JohnM. When my father’s cancer became unmanageable for him–and for us–he went into institutional hospice care. Those wonderful folks made the unbearable bearable.
The managed his pain and helped my sister and I come to grips with what was happening, to him and to us.
First off, hospice care can provide a much-needed relief from the gruelling task of caring for a loved one who’s dying. We wanted to do our best for dad but often weren’t sure what that was and how to do it. It may have just been dad, a very independent cuss to the very end, but he always fussed about being a “burden”. I think sometimes he didn’t ask for help he needed, even though we made a point to never look tired or stressed.
Second, those blessed hospice folks helped him and us come to terms with the fact of his impending death. He was too tired to fight anymore and somehow we all had to learn how to handle the inevitable. They were endlessly kind, patient and understanding. People usually shy away from any serious mention or consideration of death. The hospice folks took away that taboo. After the initial jolt it was such a huge relief to stop pretending to ignore the obvious.
I can’t say enough positive things about hospice care. Death is hard enough anyway. They made it bearable, and even peaceful for all of us.
And yeah, if there are angels on earth, they’re hospice folks.
Ivylass, I’m so sorry for the pain you and Ivylad are going through.
I can’t add much to what’s already been said. I do want to add that my experience with “institutional” hospice was the best. They were the most caring, compassionate individuals I’ve ever met. The hospice facility was lovely and homey. They even had a volunteer harpist come in once a week to play for the patients in their rooms.
You’re right, TVeblen, hospice workers are truly a little piece of heaven right here on earth.
Let me add my praise for in-home hospice. When my 46-year-old wife was dying from a progressive dementia, in-home hospice was a blessed answer. They brought in a professional hospital bed, oxygen, Ensure (she had lost the ablility to swallow, and was tube-fed), and all medications. Hospice nurses visited daily. The kids and I were gently offered — but not pressured to accept — spiritual counseling. (We declined, but appreciated the delicacy of the offer.)
When she did die, at home in the house she loved, surrounded by her children and parents, hospice folks came and disposed of medications, removed all the medical equipment, and offered sincere condolences and the opportunity for further counseling or support beyond her death.
The hospice folk did everything possible to ensure her comfort, and were compassionate without intruding one iota beyond where they were sure they were welcome.
It was a death with dignity, and I was able to hold my beloved’s hand when it happened. There is no price for that.
Truly angels. This happened seven years ago, and I have not stopped singing their praises,
And, it should be noted, insurance companies pay for their services in a flash without haggling, once a doctor has determined that the person has less than six months to live. It is to their advantage to do so, because heroic end-of-life measures are incredibly expensive.
My compassion to Ivylass and Ivylad. I hope hospice is as beneficial to you in Florida as it was to us in Oregon.
I’m going through this now with my wife; progressive dementia, with the added complication of diabetes and tube-feeding. I don’t know how I could have coped without the advice and assistance of the hospice staff. Today I had a nurse and doctor spend an hour and a half discussing treatment options; in addition to increased pain her blood sugar level has shot up. Up until now her diabetes has been controlled by oral medication, and normally the next step would be to switch her to an insulin regimen, but it was decided that, considering the brief amount of time she probably has left, this would be a needless complication.
And I can second Hometownboy’s comment on the insurance company’s coverage. Blue Cross sent me approval of the hospice coverage within a week of my wife’s discharge from the hospital, even though they’re still insisting that the last few days she was in the hospital were not medically necessary (which our doctor is appealing, of course).
Thanks for everyone’s advice. Ivylad’s father is sleeping a lot, and they have an appt with the doctor next week. Ivylad is going with them, so I will remind him to ask the doctor about hospice. It sounds like it will be a huge help.
I can only echo what others have said about hospice being very helpful in describing for you what to expect and what is going on at the end. They are truly, truly angels.
And, having worked with dementia patients at an adult day care facility for a short while, I can only sympathize with you Lurk and Hometownboy. An awful, awful disease.
When my mother died, 15 years ago, we had hospice (in-home) for her in the last two months. We would have had it sooner, but, at least in our area, hospice won’t get involoved until the doc has given a prognosis of 6 months or less to live, and her doc didn’t want to do that until the very end. I do remember that the first time the hospice nurse came was on a Friday; she saw that we really needed a hospital bed for Mom. She told me that because it was Friday afternoon, she probably wouldn’t be able to get us one until Monday morning. But she made a few phone calls, and the bed was delivered within hours. Another time, the hospice nurse who came brought a rose in a bud vase for my father and me; she said that people are always bringing stuff for the dying, but it’s seldom that anyone thinks to bring something for the caregivers. They were instrumental in getting my mother prescribed some liquid Morphine when the pain got bad. They were very helpful with all the immediate stuff that needs to be done, when she finally died.
About a month after my mother died, we got a survey card from hospice, asking what they could have done that they didn’t do. I told them that the only thing was that they could have paid us for the privilege of serving us;) They were wonderful.
ivylass, I can’t remember at the moment what yours and ivylad’s religious beliefs are, but I’ve said a prayer for you and your family. At the very least, it can’t hurt.