Hospice questions

[Lobster]

The ALS clinic suggested hospice. Hospice sent a slick salesperson. I kept saying I did not need to be sold on it. I had very specific questions. The sales lady pressed hard, trying to get me to sign on the dotted line... which is funny because my hands and arms don't work at all.

Anyway, here are my questions that she would not answer:

Will they provide a cough assist? A suction device? Trained personnel to use those things?

What about assistance with activities of daily living? (Showering, toileting, eating as long as I can still sort of eat, etc.)

Exactly how is the caring and teamwork going to manifest?

Who is going to come to my home and when, now, and later when I am even weaker?

Exactly who is going to administer the medications you say you will manage?

What happens if I crap in my bed and no one is here?

The sales lady could not answer these questions. She kept saying they were going to care about me and there was going to be a whole team. But she could not tell me what that team would do and how I could tell that they care. "I can't promise you anything."

Seems to me like I am being pressured to buy something without knowing what I am buying.

If anyone has any advice, please advise!

Some people tell me hospice is useless. Others say it is a godsend. How do I get the latter version?

 

[trfogey]

If they send a sales person to interview you, that's a pretty good sign that they fall in the former category.

No answers to your questions -- no signature on the dotted line.

If these folks came in response to a referral by your ALS clinic, I'd call the clinic and give them a heads-up (or piece of your mind) as well. If you are near DC, there are bound to be several agencies that you can choose from, so don't settle for vague platitudes instead of firm commitments.

 

[10steps]

My husband went on hospice only a few weeks ago. We acquired all needed equipment before signing anywhere and I was advised by someone very knowledgable with ALS care in our state.
We asked about health care aides today and was told they could send someone out for 45 minutes to bathe him or other personal type things. It sounded like he would be totally screwed if i wasn't home or if we didn't have attendent care from another agency. We were told their social worker could provide sources for home health care but it would probably be out of pocket for us. Your state may have programs to help.
We signed up for hospice mostly because they could get medications our insurance wouldnt cover and they handle the communication with the pharmacy/doctors for catheters/bedbags/perscriptions...i just go pick up the stuff since we live too far in the boonies to have anything delivered. The send a nurse once a week for now and I can call 24/7.

Your questions are good and should be answered....try another hospice and speak with someone in charge.

 

[tmasters]

Lobster,

Those were excellent questions. If the sales person can't answer them you were quite justified in not signing the contract. I would suggest you search out other hospice teams or get answers in writing from the one who wouldn't give answers.

-Tom

 

[notme]

Definitely don't sign with someone that won't answer the most basic of questions! Check with and interview more than one company. Check with your doctors about the machinery you need--cough assist, suction, etc. You may find they don't supply things like that.

I'm sure other PALS that have companies will give you some better answers. I'd also suggest calling the ALSA in your area for advice from their social worker.

Best wishes

 

[Gentleman Jim]

Lobster,

I can only give you our experience with hospice. My mother was 88, she wanted to be

home instead of a Nursing Home. Medicare will not provide "skilled" care after a certain
period of time at home. Hospice is a nice way of saying they expect you to die soon.
They provide comfort, not cure. As I understand it, you are able to go back to Medicare
anytime you choose to.

My mother was home on hospice, she called me and said she was having trouble
breathing. I called the EMS to take her to the Emergency room. They explained to me
after word, I should have called the hospice nurse. When she went to the hospital, she
converted back to Medicare. Then to the Nursing home, that is Medicare.

So, hospice has its place, but it is for comfort not cure. My pal is not on hospice because
we are using the VA, that is much better for now.

Jim

 

[Blubear]

My father had a wonderful caregiver in the beginning for just the basics like bathing, shaving, help getting in and out of the car etc.... The caregiver wasnt part of hospice, but was provided by the VA. When my father went on hospice care all they did was send a nurse out to check on him, do his stats, check his Cath., and they were on call for any other emergencies that came up. The first nurse assigned to him, he didnt "click" with, so we requested a new one that was much better. They took care of all his needs as far as cough assist, the bed etc... and what hospice didnt cover, the VA did. I was surprised that hospice didnt come out more than they did. The caregiver was there when my father passed away, but nobody from hospice was actually there. We handled most of the rest ourselves. They did come out once to show US what would be good for US to do for physical therapy, which the VA caregiver did every day during the week, and then I did it for him on the weekends. Even with the VA caregiver they didnt approve 40 hours a week until it was really bad, and if we needed help beyond the 40 hours it was an out of pocket expense. The hospice did provide people who would volunteer to at least sit with my father to have someone there if my mom wanted to go out to dinner or to the store when the regular caregiver wasnt there. We never needed that help because my mom and I took care of him ourselves and there were two of us so one could go and do the errands if need be. Hospice did offer 6 massage therapy appointments, which my dad loved. After the 6, it was out of pocket. There was also a pastor who came by who was there not only for my dad, but for the entire family if we ever needed it. They also offered a counselor for my father if he wanted one, but he never did. Right now they are there for bereavement counseling if we need it. So, bottom line I would shop around to see which company would give you the most benefits that a PALS would need. Keep in mind that ALS isnt so common, so you should stress that you want people with experience with this particular disease. We were pretty shocked when my dad did ask for hospice care because we already had the other caregiver at the time. But the difference was that they were able to help a great deal with "quality" of life things and his life became much easier because of it. Do your checking around, and keep the list of the excellent questions you have. Even if you decided you are not ready for it now, when you are, you will know who to call.
Good luck hun!
Kari

 

[grandmommyk]

Every Hospice is different. Of course you want to keep calling until you find one that can answer your questions. They are designed for the last 6 months of life. They are paid by medicare, and they are supposed to do what is necessary for comfort. They are not supposed to do anything to prolong life. At least here, there is a vast difference in how that rule is interpreted.
My husband has been battling ALS for a long time. While I was trying to continue working for the desperately needed finances, we checked into Hospice from time to time. The first time we were told he didn't yet fit the criteria. The second one would not take him because he had a feeding tube. They felt that was prolonging life. The third one didn't have a problem with the feeding tube as they felt it would be very cruel to allow someone to die from lack of food. However they would not dispense antibiotics to him if he was to ever need them. They felt like giving antibiotics prolonged life.
We eventually did go on a Hospice service that felt the feeding tube and antibiotics helped provide comfort. We were with them for 4 1/2 years. Rick voluntarily went off service this Spring as he wanted to go on a cruise and plans to keep living for a while. They are required to reassess patients who continue to live to be sure they still qualify. With Rick he will have problems in an area for awhile and progress in that area, then suddenly level off and some other problem develops. While he is fighting the newest problem, the old one sometimes gets a little bit better. That is what has kept him going for so long. On the other hand, it always gave them a reason to keep him on the service.
We had a nurse visit once a week and an aide come out to bathe, shampoo, shave etc 3 times a week. She was allotted 90 minutes.
One of the benefits was the medical supplies they provided (gloves, pads, wipes, medications etc). Another was that if I felt something was wrong, he didn't have to go to the ER. That is a plus cause he hates hospitals and won't go until things are really bad. There was a couple of times that we did go to the ER, once on their advise. The nurse said she could see that something was wrong but with the limits they had placed on them, she could not pinpoint what it was. Therefore she couldn't treat it. She signed us off Hospice, we went to the ER and a chest Xray showed him to have walking pneumonia. The day after he was released, they came out and put him back on the service.
I have been told to get the medical equipment and things like the feeding tube before going on Hospice. Rick already had the feeding tube and bi-pap although he has never adapted to it. So we really didn't have any experience there.
When my father-in-law died years ago. A social worker from Hospice spent a lot of time at the house as his time came near, but in most cases I don't feel someone stays. I have heard of it on occasion. They do offer some respite though.