[villageuser]

I started looking for placement for my mother in hospice, at her request. A doctor was not involved. It all depends on why one is going to hospice, I guess. She had a high level of dementia but was lucid enough at times to let me know she wanted no more care for her. I called up a hospice, they came and evaluated her, and decided she was a candidate for hospice and palliative care since she was in a steady declining mode, and her condition had only one outcome. It’s been a couple of years now. Twice I was notified she was being considered to be removed from hospice. They thought she was holding steady and was no longer in immediate need of hospice. Both times, she was kept in hospice. Once because they realized she had been drastically losing weight for no reason, and the other time she got Covid. She has now been in steady decline for awhile; a few times we have even thought she was in transition.

So, do what you feel is most comfortable for you. You can talk it over with your doctor. Or interview several hospices first and get evaluated by one of them. They are all different, they offer different services, and have different focuses. I am sorry you are going through this. I wish you the best.

[La lamy]

What a sobering topic. I wish you the best scenario for your condition. Much peace to you during this process.

[Remembergoldenrule]

Originally Posted by retiredguy123

Hospice is not necessarily in a facility. It can be done in your home. You voluntarily forfeit your Medicare Part B benefits in exchange for a specialized Medicare Part A plan that will do nothing to attempt to prolong your life. Hospice is not mandatory. They will not even allow the patient to receive fluids or IV nourishment. My only experience with hospice was with a friend in Virginia. It was a very negative experience because the hospice nurses were rude and totally incompetent and I had to throw them out of my house several times. But, apparently, there are some good hospice nurses and my experience may not be typical.

I went through Hospice twice with parents. One in a facility and one at home. Both times (different states) the experience was wonderful as far as care. They followed the patient requests as far as meds and DNR. Usually Hospice is last step in our lifecycle. I have meet one person who did end up leaving Hospice and is still alive and healthy 5 years later.

[sharonl7340]

Originally Posted by lanie1160

Can anyone tell me their opinion of joining hospice?
It has gotten to that point and want to know I am making the right decision. Thank you

I want to add my experience. My mom had Alzheimer's Disease and we had hospice for the last year and a half of her life. It was a very very positive experience. We no longer had to spend precious energy getting her to doctors appointments (they came to us), she had a bath lady who came 3 times per week, and took a huge burden off our shoulders. We were so grateful for them.

But we didn't "join" them. Mom's doctor wrote the order for them and we got to choose the agency. It was performed in her home and nurses came 3-4 times per week. The goal is to stabilize the patient and make them comfortable, not prolong their lives by artificial means. In our case there was nothing to be done except to wait and let the Disease take its course.

You need to talk with your doctor about the need for it.

[Andyb]

Originally Posted by lanie1160

Can anyone tell me their opinion of joining hospice?
It has gotten to that point and want to know I am making the right decision. Thank you

They are wonderful, much better care than any hospitals around here. I advise to have a consultation with them about your needs.

[beckylou152]

Originally Posted by lanie1160

Can anyone tell me their opinion of joining hospice?
It has gotten to that point and want to know I am making the right decision. Thank you

There are a lot of inaccuracies on these replies so I’ll jump in here with some actual info and hope it helps. I’m a nurse, I’ve worked in hospice, and my father had hospice a few years ago before he died. Hospice care is expert end of life care provided by an interdisciplinary team. A person needs to have a physicians order for hospice, although hospice providers can come to your home and assess you and contact your doctor for an order. Your doctor needs to think and certify that you have likely 6 months or less to live, although you won’t get kicked out of you don’t die in that 6 months. Medicare and most insurances provide hospice as a benefit. Hospice will cover all medications, medical equipment, provide a nurse, nurse aid, social worker, etc. and do everything they can to help their patients be comfortable. Their expertise is comfort care. When you sign up for hospice, you are agreeing not to simultaneously seek curative care ( such as chemo, surgeries, etc.). Hospice care can be provided in your home, a hospice facility (although you will have to cover room and board), a care facility, etc.

On a personal note, here is my experience with my dad’s hospice care. He had COPD and heart failure. Every time he couldn’t breathe the docs sent him to the ER, where he would be seen, admitted, and they would send him home in 2 days. It was exhausting, and he was clearly not doing well. I called his doctors and they told me that there was nothing they could do. Hospice was consulted, and they came and started him on some new meds, got some helpful equipment in the home, sent in a home health aid, and talked to my folks about my dad’s wishes. My dad was a fascinating guy and wanted to record his life story, so they sent in a story catcher who would sit with him and record his life story. A nurse aid bathed him 3 times a week. At first he was nervous but soon he got used to that and he loved taking that burden off my mom. As his days winded down, the nurses gave him just a little morphine when he was uncomfortable. My dad died 6 months later, surrounded by his family, in his home. I can’t imagine doing this without hospice.

Someone was bashing hospice saying they can’t provide IV fluids or tube feedings. Hospice care is end of life care, so they do not do any force feeding or fluids. It is to allow a natural death. Over the ages, when people are dying, they don’t eat or drink much as time goes on. Force feeding doesn’t do anything except prolong the misery. They do not with hold food or fluids. My dad ate very little during the last month of his life, but he did request lots of different things that he loved and we made sure he had all of them!

Now there is one other type of care that gets mixed up with hospice that is called palliative care. Palliative care is a specialty that can be provided along with curative care. Palliative care providers address chronic suffering and are experts at symptom management.

[deborahcme]

In hospice care you do not receive any medical treatments and this should be explained to you and to your family. You do receive palliative care (pain medication). Here is my experience with my mom. Once the difficult decision was made, the focus shifted to quality of remaining life. Volunteers with hospice visited my mom and focused on things she'd enjoy--like speaking to a young student who was studying her native language (Italian), or bringing in a volunteer who is also an accomplished opera singer. Another volunteer who was traveling to her native hometown in Italy sent back photos and IPhone videos. It was also made clear to me that although hospice is designed for end of life care, that people can end hospice care at any time. I also got help with planning for the funeral and other difficult end of life decisions from caring, lovely volunteers. The assigned nurse and doctor were also caring and kind. I'm sorry others had a bad experience and feel grateful that our experience was comforting to my mom and to us. I felt that hospice workers were angles on earth.

[MandoMan]

Originally Posted by retiredguy123

Hospice is not necessarily in a facility. It can be done in your home. You voluntarily forfeit your Medicare Part B benefits in exchange for a specialized Medicare Part A plan that will do nothing to attempt to prolong your life. Hospice is not mandatory. They will not even allow the patient to receive fluids or IV nourishment. My only experience with hospice was with a friend in Virginia. It was a very negative experience because the hospice nurses were rude and totally incompetent and I had to throw them out of my house several times. But, apparently, there are some good hospice nurses and my experience may not be typical.

My grandmother had hospice care at home in 1986, then was taken to a hospice facility after she bled a lot, and she died that night. She was so grateful for the care she received. My mom had hospice care at home when she was 85. Someone came every day. She lasted about three weeks. She refused food, and toward the end, water, slipped into a coma, and was gone the next day. There was paperwork my dad had to sign in advance—and my mom, too, I guess—but after then the people who came were very nice, unobtrusive, and everyone was grateful.

I know this is hard. I wish you peace and a minimum of pain.

[KCrowne]

Originally Posted by lanie1160

Can anyone tell me their opinion of joining hospice?
It has gotten to that point and want to know I am making the right decision. Thank you

We used Kindred in-home hospice out of Ocala when my husband entered hospice for end of life care. I was told we had to find a place in the county in which we lived, so Cornerstone was not available (we lived in Marion County). Sadly, our experience only lasted for a few days, but the nurses were very competent, helpful, and knowledgeable. The order for hospice came from his oncologist. Prayers for comfort during this process.

[ThirdOfFive]

Originally Posted by PugMom

you touched on 1 of the things about hospice i'm not comfortable with: the lack of care when an issue should arise. if you have a heart attack, etc., no care is given. they hold your hand while you die, ...please tell me i'm wrong

Not quite true. Hospice care is available when your condition is terminal: available when you and your doctor (and family, hopefully) decide that you are most likely going to die within a short time regardless of care and treatment, and that there is virtually no hope of you being able to regain a reasonable quality of life regardless of treatment.

Hospice care is comfort care, not restorative: it is end-of-life care and they do much more than "hold your hand". Hospice workers administer drugs designed to keep you comfortable, provide personal care (assisting with toileting, grooming, feeding, etc. as needed), act as a laiason between the patient and doctor, interact with family, and generally assist in just about all aspects of the dying process. Medicare - funded hospice is, as I recall, is available when the physician decides that the patient will die within six months, but no worries: if you make it to the six-month point alive, they just give you another six months. Anything beyond that I don't know: I had only one client exceed the six-month point and he died within a couple of weeks of renewal.

As with any other service, there are good providers and bad providers; it behooves the patient and their family to do their research ahead of time. Doctors do recommend agencies but in the cases I've been associated with those recommendations are generally for services affiliated with the hospital/clinic that they are affiliated with. There are most likely differences that vary state-to-state (words associated with the service may have slightly different meanings depending on the governing rules in effect, possibly a slight variation in services available, etc.), but this is generally the way that Hospice works.

All in all, not a bad way to cross the bridge.

[ertell1@icloud.com]

Hospice is wonderful! You will not regret it. They supply everything you need covered under Medicare… no charge for you. The people are so kind and supportive. I’m in awe of this great service…
We have signed up with hospice right now and can’t sound their praise enough…

[kendi]

Originally Posted by lanie1160

Can anyone tell me their opinion of joining hospice?
It has gotten to that point and want to know I am making the right decision. Thank you

Hospice is a peaceful and beautiful experience for end of life care. Keep in mind too that it’s not just for you. If you have family it’s for them too. The support they receive is amazing and it will be there for them long after you’re gone. I used to work at hospice and one thing I heard over and over is, “I never knew this is what hospice was like. Wish I would have come sooner.” Patients and family say this.

You may already know: Your doctor has to make a hospice referral and he/she has to believe you have 6 months or less to live. Then hospice will evaluate/examine you to see if you are hospice appropriate. Meaning you need to meet insurance requirements. If you are admitted they will reevaluate every month. Some end up being in hospice for a year or more. Others are discharged cause they no longer meet the requirements. Believe it or not some people improve after hospice care begins. Sometimes it’s because the pain is relieved so the energy that went to dealing with the pain is now used on normal body function and maybe some healing. Other times it’s because they are taken off of the multiple meds that had been interacting with each other and wearing on the body.

Keep in mind too that you can choose to be discharged from hospice at anytime.

[kendi]

Originally Posted by PugMom

you touched on 1 of the things about hospice i'm not comfortable with: the lack of care when an issue should arise. if you have a heart attack, etc., no care is given. they hold your hand while you die, ...please tell me i'm wrong

If you mean life saving care you are correct. You will certainly receive comfort care. Hospice is for end of life, you need to sign a DNR upon admission. You shouldn’t be in hospice if you are not at terms with the fact that you have only a short time left to live. After admission if you have a heart attack and you or family choose medical care then you will simply be discharged from hospice since you no longer meet the requirements.

[Sherkugawa]

Originally Posted by retiredguy123

Theoretically, they are supposed to treat conditions that are not related to the patient's primary illness, such as a skin rash. But, I doubt that they would provide much treatment for a serious condition like a heart attack.

As I understand it, hospice is a Medicare Part A benefit where the hospice provider is paid a daily rate per patient to provide the hospice care. When you sign up for hospice, you are suspending your Medicare Part B benefits in exchange for the hospice care. So, if you need an expensive treatment or surgery, you would need to cancel your hospice agreement.

My wife was in at home hospice care for 2 weeks before she died. Hospice, by definition, is end of life care. No, she did not have a nurse there on any regular basis. This may be distressing to some people but the reality was that there was not going to be any recovery and she was going to die in the hospital bed I had rented. The hospice nurse was on call 24/7 so that made it easier to cope with what was happening to her and I used the nurses availability.My wife was in significant discomfort a morphine was given to alleviate her pain. As the pain increased more was given, at the nurse’s suggestion. Again, the object of hospice is to make the dying individual as comfortable as possible until they die. Everyone reacts differently to these types of situations but hospice worked perfectly and was completely in tune with my and my wife’s wishes. My only regret is that she had to suffer for those two weeks!

[Villagesgal]

They were wonderful when my husband was dieing. They give meds that kept him pain free and alert. The nurses were kind and caring. We used Cornerstone Hospice in the Villages on 466. They also have volunteers who will come and sit with your spouse so that you can run out to the store or just have an hour or two to yourself. Hospice made the last month of his life manageable for him and for me. Our sons came and were able to have some decent time with him pain-free. I don't know about any other facilities, but the people at Cornerstone Hospice were great. I'm sorry you are in a position to need them, but they are caring and kind.