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Very helpful member
Jun 1, 2006
When I was put on Hospice a few months ago I was not told that if I had any other medical emergency not related directly to ALS that Medicare would not pay for it.

I took myself off Hospice February 29, 2008, because I was told a visit to the ALS clinic would not be paid for while on Hospice, and I had a visit scheduled for March 3, 2008.

The company that was caring for me on hospice did not send in the paper work to Medicare that said I was no longer on hospice. Medicare assumes once you go on Hospice you stay on it until you die.

Around May 11, 2008 I had begun to vomit, and I was aspirating some of the fluid. I could not catch my breath, my wife called an ambulance, my O2 levels were at 70%, and they took me to the hospital. I stayed about a day and a half in the hospital.

When I got the bill for all this, Medicare refused to pay anything, saying I was still on Hospice. Now this was a full two and a half months after I had signed myself off of HOSPICE. The hospital bill alone is over $16,000, much less the Ambulance, Doctors, etc..

I have appealed this and I have been on the phone numerous times trying to get this cleared up. It is a royal pain. Medicare says the Company Trinity Hospice has to send them proof that I was no longer on Hospice. All the people I owe money to have to resubmit their bills.

PLEASE, Learn from my mistakes. Once on Hospice nothing is paid for unless Hospice orders it. No ALS Clinics, no emergency room, no other Doctor visits, etc. The only purpose of Hospice they tell me is for Palliative Care. To make you as comfortable as possible until you die. It normally only last for 6 months.

If for any reason you have to go elsewhere for treatment and remove yourself from Hospice, be sure to keep a copy of the removal form to prove you left Hospice. They never offered to give me a copy and I had no way of knowing I would need one.

I now am on "Home Health Care" where a nurse is on call 24/7 and they check on me about 2 times a week to see if there is anything they can do to help me.

For the benefit of those who are not familiar with it, from the Government Medicare web site:

Hospice Care
Hospice is a program of care and support that you may want to consider if you or someone you care for is terminally ill. Here are some important facts about hospice:
  • Hospice provides comfort and support services to people who are terminally ill. It helps them live out the time they have remaining to the fullest extent possible.
  • Hospice care is provided by a specially trained team that cares for the "whole person," including his or her physical, emotional, social, and spiritual needs.
  • Hospice provides support to family members caring for a terminally ill person.
  • Hospice is generally given in the home.
  • Hospice services may include drugs, physical care, counseling, equipment, and supplies for the terminal and related condition(s).
  • Hospice isn’t only for people with cancer.
  • Hospice doesn’t shorten or prolong life.
  • Hospice focuses on comfort, not on curing an illness.
  • For more info:
Home Health Care is covered at this link:

I hope this will help someone keep from making the mistakes I have made.
Thanks Al. You might save someone else a whole lot of trouble.
Dangers of Hospice.........

Please let anyone you know who may need to go on Hospice about what I experienced here in my other post.

I noticed there are many threads where Hospice is brought up, but not many answers.

Capt. Al,
After all the help you have freely given others, I hate that you have this ridiculous complication to sort through. I wish you strength to tackle it. Here yet is another example of your kindness and helpfulness to others on this forum. Despite this new burden, you go out of your way to inform others so as to prevent them from finding themselves in your circumstances. You're a true hero, Capt. Al.
Good luck to you sorting through this new struggle. I know it can't be easy for you and it's such a shame that you are having to deal with this as you continue to experience increased weakness.
All the best,
They wanted to put Freddie on hospice around a year and a half ago....I didn't do it and thank God..... Freddie is going to have a trach and vent at the end of the month, I wanted to have his B-Day first....I know that alot of people do not do this. I do not want to give up yet and I asked him are you done making music and he said NO! I feel that if we would of gotten on the Hospice, we would not be having this conversation.....I hope that everyone is well here and once again thanks for ALL the wonderful support, Irma thanks so much for talking to me when I was going through those few "scary" days, Freddie says to come by and bring him a picture of Rudy. He wants to give you his cds of music...Thanks so much for listening to me when I needed you....So call me again! :):) Please pray for us as we go through again another transition. I was also wondering if anyone know about a bidet for the wheelchair? Thanks again!
Sorry to hear about your Freddie but good for you fo rmaking happy memories.
You can get a commode chair which is on wheels and can be used over the toilet or in the bedroom - has a removable "pottie" portion.:?
Hospice has been good so far

Dear Captain Al

I am so sorry about your bad experience with Medicare/Hospice.

We just signed for George for Hospice and have our disability SS phone interview tomorrow. This process with disability is dawnting. Hopefully, we will only have to wait 5 to 6 months to get Medicare and begin receiving SS income. My husband is only 58.

Anyway, the Hospice part of it is covered 100% with my husbands work insurance. The insurance terms 8/08 and then I will pay for Cobra until Medicare kicks in.

My husband also has another disease that he sees another doctor, not related to ALS at all, and social worker called for us yesterday and said, as long as not related to the ALS he can make his appointment and it will be paid for by insurance.

The hospice has been called in for care issues. He has a healthcare aid come every weekday to shower, groom and dress him. This has been a big help for me, as I will be working soon, 3 days a week to make up for his lost salary.

Also, the social worker, nurse and chaplin will schedule their weekly visit so he can be fed his lunch during the 3 days I am gone.

I hope my husband does not experience what you had to go through and hospice continues to give us the care support that they have so far.

I hope you are doing much better and in are in my prayers sir.

Be informed about Hospice before........

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?
Dear Al

I know all this is so dawnting! Just today, we had his initial interview with ss disability. George is only 58 and unfortunately, his employer, where he just had to retire does not contribute to state disability, so we have to wait for a check from federal SS. We are blessed that we do get a pension from his previous job that he retired from 2005.

They explained today that with ALS diagnosed, process is somewhat quicker. They will send us out papers to sign to get process going. Most likely, if approved, will be a check in 5 to 6 months. Medicare would follow then.

I will pick up Cobra insurance for him until this gets approved. And then no disability checks etc., so pension check is surely going to be stretched. I will be working additional hours to help with expenses. Of course this leaves George alone more of the week.

You know Al, I truly cannot understand how anyone can get through all this without a faith in God. He is the only thing that keeps our head above water. Praise God.

Stay strong Al and continue your encouraging postings, experiences and lessons to learn. We need them as much as the bread we eat. You are being used by God in a mighty way!

Your sister in Christ,

Patty :)
Oh Annette, how did I miss this post? I am so sorry I missed it. I really enjoyed talking to you and Freddie. I understood him so well, I guess Rudy trained me well, huh? Tell Freddie I will come by soon, before he gets his trach, I'd like to give him a hug, and pray with him, oh and bring him a picture of my son. Love you guys, Annette. Don't forget to hug Freddie for me! Hi Freddie! Love you!

Thanks Patty.
It is people like you that keep me going, here on the forum.

I am only human and have my weaknesses just like anyone else. I did not get on the forum for the past few days because I was in a dark place with my mind and attitude. I try to stay away when I have those times. I always try to focus on the positive outlook on life and living with this dreaded disease. People need encouragement and lifting up at times like this in their lives.

I never want to seem judgmental or come across as cocky with my attitude or my spiritual beliefs. I truly do understand where people are coming from when they say it is hard to have faith and believe at a time like this. Yes, it is. But, with God all things are possible. It is only by His grace and mercy that I am able to cope, one day at a time.

I have terrible problems in my family that I do not share with others on the forum. Financial, emotional, and relationship problems abound. In the midst of things that overwhelm me, I turn to the Word of God for strength and guidance.

1 John 5:4, "For whatsoever is born of God over cometh the world: and this is the victory that over cometh the world, even our faith."

Without the comfort of the promises in the Bible, I do not know what I would do. No, I am not some super spiritual person who walks around carrying a big bible and a cross around my neck all day, preaching to who ever I run across. I am just another sinner, saved by grace, who is fighting, yes, fighting every day for the faith to overcome each and every obstacle in my path and to make it to the end.

2 Corinthians 1-2, Grace be to you and peace from God our Father, and from the Lord Jesus Christ.
3, Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4, Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God.

I humbly seek to encourage you, comfort you, and lift you up, so that you may find the strength to overcome the battles you are facing with this dreaded disease. Most of all that each and everyone of us may find peace.
thanks for sharing Captain Al

Thank you for your favorite verses and putting things so honestly. Praying for you always,


Isaiah 26:3 You will keep him in perfect peace, whose mind is stayed on You, because he trusts in You.

**For anyone that reads and wants to know Jesus in a personal way and doesn't know where to begin, please send me a private email and I will send you a wonderful booklet
that can help you! It sure has helped me and keeps me grounded. I asked Jesus into my heart 29 years ago and my husband asked Jesus into his heart 9 years ago. Best decision we every made. We know we will spend eternity with Him.
Praying for you all! :) Patty
Hoping for the best,
You should not have to wait for SSI there is a law called the teri law this is for ALS patients, because this disease is so progressive, there is no waiting period. I know because Freddie got his immediatly sp? after applying for 3 years, you have to have a diagnosed from the doctor...I hope this helps Hang in there....I know that it is tough..I will be praying for you.Keep your chin up...
Capt. Al,

Very sorry about all the hassles you've been through with hospice.

The following verses are a few of the ones that have helped me through those dark days. I wanted to share them with you.

As for God, his way is perfect; the word of the Lord is flawless. He is a shield for all who take refuge in him. 2 Samuel 22:31

Surely God is my salvation; I will trust and not be afraid. The Lord, the Lord is my strength and my song he has become my salvation. Isaiah 12:2-5

But he said to me, "my grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. 2 Corinthains 12:9

Al, you have been such an encouragement to many, many people here on this forum and I'm pretty sure in many other areas of your life. When I read your posts I am so often reminded of Deuteronomy 31:6 "Be Strong and Courageous".

Thank you for an excellent example of faith and courage.

I will eagerly look forward to meeting you one day in eternity. Until then, be well my friend.

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