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Distinguished member
Dec 19, 2007
Loved one DX
Hello everyone,
Could someone please give me their ideas on having hospice come in? I called today for my mother in law and they said that they will help (of course). I just don't know if this is what we need. The nurse I spoke to said that they would come and assess her and as her needs grew they would deal with it all. It sounds great. I am just unsure. She goes back to the dr. on the 29th of July. I feel she really needs some help but the problem still remains that 3/4s of the family still has their heads in the sand with this and NO ONE really talks about it. It is getting to the point where she needs help with everything and I try as much as I can but I have 2 small children that are great but I don't know....AHHHHHHH
Anyway, I just wanted your thoughts and maybe your experiences with it!
Thanks so very much
In friendship
Hi Jeannie- I am a big fan of Hospice since I see how much they help with my Mom. She is at end stage Alzheimer's and they come to her nursing home and give extra comfort. Plus they are great with family. They can get the ball rolling when it comes to starting conversations.

That said, I think you have to check the rules in your state. MT (Captain AL) found that he did not qualify for clinic visits once he signed up for Hospice. That's a little strident, IMO. I am not sure if every state interprets the rules as tightly. The social worker at your MIL's clinic would know. He or she might also have some tips regarding how to talk with family members who "stick their heads in the sand."

Good and please let us know how this works out! Cindy
Hospice in NJ

Hi Jeanne

When our ALS doctor suggested Hospice for my husband's care needs, I was skeptical but willing to have them come out to do the eval at our home. Well, it has been almost two months and we have a health aide (same girl each day) and she showers him and grooming etc. Just that alone is so helpful to me. It was an adjustment for him but now he sees that it frees me to do other chores, he is fine with it.

Tomorrow he has his ALS clinic visit and Hospice covers it 100%. Anything to do with his ALS, durable medical, etc. is covered under hospice and our private medical insurance.
Now, when he becomes eligible for Medicare, Medicare also will cover 100% of Hospice.

Hope I have helped answer some of your questions but Hospice can answer all of them; make a list and ask away!

Dear Jeanne,

We were quite surprised when my husband's doctor suggested Hospice. We did not feel that we were at that "place" yet, however, we went along wiht it and were so happy we did. My husband's family was stunned as they were still in denial.

Hopsice provided us with immediate assistance via medications, equipment, support and comfort. They also have a social worker assigned to each case and you can ask for a personal assistant to assist with bathings, etc. In our case they came once a week. If I needed them more often (in one instance when my husband had had a fall and was having a very bad breathing day) they came immediately. I cannot say enough about how wonderull and supportive they are. If they called on a day when we weren't up for company they were sensistive to that. I encourage you to get Hospice involved.

I will also add that the first nurse they assigned to us was not a good fit personality wise. In addition she disliked dogs and we felt that we really needed someone who would accept our dog as part of the family. Hospice was very sensitive to this and sent us two nurses who loved dogs!
More about Hospice

This is related to my own experience with Hospice from a previous post. I still believe Hospice is very important and can really help a lot, but know the limitations involved.
To read all of the comment go to:

Please, you do not have to call me sir, you make me feel so old. :-D
I do appreciate your prayers. Thank you and all the others for your kind comments.

Each state has their own Hospice programs. Unfortunately, where I live, Mississippi, their program has some flaws. When my wife's mother was on hospice for cancer there were no problems and they worked great with her. I guess a lot of it depends on the workers who are supplying the service.

The bills that were not paid will be resubmitted to Medicare for payment and hopefully that will solve that problem. Just another hassle we do not need at this time.

Patty, as long as George is on Hospice covered by private insurance, not Medicare, you may be able to get him treatment for any other problems. Just be careful if you ever get on Medicare alone they will cut off any other treatment. They told me unless the Hospice Doctor sent me for a specific treatment, then I would not be covered by Medicare paying for the treatment. They also explained that Hospice was for Palliative Care only.

From US News and World Reports, "Hospice care is a type of palliative care that is focused on the end of life. It is for patients whose cancer cannot be treated. For a patient to be eligible for hospice services, the doctor must certify that the patient is expected to live six months or less.

Here is an excerpt from the Medicare Hospice information page:

What Medicare Won’t Cover
When you choose hospice care, Medicare won’t cover any of the following:
• Treatment intended to cure your terminal illness

You should talk with your doctor if you are thinking about getting treatment to cure your illness. As a hospice patient, you always have the right to stop hospice care at any time and get the Medicare coverage you had before you chose hospice care.
  • Prescription drugs to cure your illness rather than for symptom control or pain relief
  • Care from any hospice provider that wasn’t set up by the hospice medical team
You must get hospice care from the hospice provider you chose. All care that you get for your terminal illness must be given by or arranged by the hospice medical team. You can’t get the same type of hospice care from a different provider, unless you change your hospice provider.

Room and board
Room and board aren’t covered by Medicare if you get hospice care in your home or if you live in a nursing home or a hospice residential facility. However, if the hospice medical team determines that you need short-term inpatient or respite services that they arrange, your stay in the facility is covered. You may be required to pay a small copayment for the respite stay.
Care in an emergency room, inpatient facility care, or ambulance transportation, unless it’s either arranged by your hospice medical team or is unrelated to your terminal illness
Note: Contact your medical hospice team before you get any of these services or you might have to pay the entire cost. "

Now they tell me. Do they expect us to go on the Internet and find all this out for ourselves, or wait until we get the bill for services not covered?
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I beleive that the Hospice "rules" are changing depending on where you are (and maybe on the age of the patient). When my dear brother was dying of AIDs in the 90s I wanted to get him into Hospice and the six month guidelines were strictly enforced. Sadly the family refused Hospice and he passed in much less than six months.

When my DH got involved with hospice we thought he probably had 1 -3 years of life. Hospice where we live is much more open to helping the families early on. They explained that they just keep extending the agreement. I would suggest checking this out based on where you live. As it turned out, my husband passed in a very short time and we were happy to have hospice.
Thank you all for your input. I am going to call them on Monday and get all the information with the Medicare and our options. I think that if they can help us and insurance will cover it, it would be good for everyone involed. They really are a fabulous organization. I know the nurse I spoke to said that there really isn't a 6 month rule for them and considering she has ALS she would be accepted.
I hope you all have a wonderufl weekend
God Bless you all
My experience with them was in February 2008. I also had to deal with Mississippi guidelines which are probably behind every other state in the USA. I think that was a big part of my problem.

There were wonderful when they worked with my MIL who died of cancer.
Hospice was a GodSend

My brother waited a long time but when we got Hospice involved it was a great thing. They paid for any prescriptions needed in conjunction with the ALS symptoms. Our nurse was amazing and when Jim (my brother) went in for his PEG tube she made sure we were NOT on hospice for that time period to ensure Medicare paid the surgery fees. They were great and in my opinion we waited too long to get them involved. They can be VERY helpful - I strongly encourage you to call them way before you need them.
My name is Lily, I'm a student at Northwestern University's summer program and I'm writing an article about Hospice, and the increasing number of people put in hospice. This story may or may not be published. First off, I'm very sorry about what you and your family must be going through, I know how hard of a time this must be. I'd like to talk to any of you who have put a family member in hospice, about your experiences. If you could contact me by e-mail at [email protected], I'd really appreciate it and we can set a time where I can call you.

Thank you for your time,
My Dad began in home hospice care when he lived with me and it was great. They sent someone by 3 times a week to hang out with him for 2 hours a day so I could leave, take a nap, take a shower, or whatever I wanted. They also provided all medications, had a nurse here once a week or more often if needed, they ordered and delivered all of his formula for the g-tube, they had all medications ordered and delivered and they provided counseling for me. They also helped me to get respite care and while I was home with my Dad I was paid $10 an hour for 80 hours per week to provide his care. When I returned to work that money was able to be applied towards someone to come to my home and care for him while I was away.

When my father became too hard for me to care for (he was falling more than 4 times a day, I had to call 911 every time to help pick him up!) it was Hospice who provided the voice of reason and they arranged for him to move to a hospice house only 3 miles from my home. When his medical insurance stopped paying for his care there, they told me that they would care for him for free and he has been there since October 2007 now, the past 4 months at no charge. The nurses, staff and volunteers spoil him, they are so nice and considerate to me and whoever else goes to see him. The regular staff are part of my family now. Most people who go to the hospice houses pass away within a week and my Dad has been one of the few patients that the nurses have had a chance to bond with.

Anyways, having home hospice care can really smooth the way not just now but later if you are considering a move to a care facility. They assign you a social worker who knows your local system and can really help things. It is a valuable service and considering you have young children, my best advice is to take all of the help that you can get!
I see we live in the same area.

My mom needs to get into a Hospice. I am just waiting for the ALS social worker to return from vacation on Tuesday. When I found out anything, I'll let you know. Right now my 90, soon-to-be 91 year old father is caring for her, and it's just too much. My mother is deteriorating before our very eyes.
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