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hopingforthebest

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My husbands last ALS clinic visit, his doctor suggested getting Hospice started.

His Vital Capacity number was at 24%. He is using the bipap machine when home more and of course all night for sleeping.

The doctor said Hospice is very helpful and not just for critical times but some patients are on Hospice even while still working. It can be helpful for caregiver.

My question is, anyone on Hospice for a long time period and if so, how long? Also,
24% Vital Capacity number seems to be the indicator of future breathing problems to come or can this improve?

He is also looking into disability, but unfortunately county he is employed with, does not offer to employees so it could take a good 6 months for federal.

So many issues to deal with that seem to cut in to quality time together.

Since his ALS was all upper body, I never ever thought about the diaphram being the
serious issue and that it what ALS is really all about. The use of limbs is not what takes the ALS patient.

Pray for a cure soon for all!

Tonight I feel so very sad.
 

Peg B

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Hi,

I am sorry to hear your husband is in this position, and very impressed he is still working.

There are many individual situations with hospice but I will give you what I know.

1. The bottom line has been a diagnosis of 6 months or less to live in order to qualify.
2. There can be no active treatment going on, like chemo for cancer.
3. There is treatment for pain and palative care meaning lessening any pain or discomfort. People "on hospice" get oxygen as needed for comfort.
4. I know a person who has been on over 2 years as they do not kick you out/off.
5. I know of a person who got better on hospice. In fact Art Buckwald, famous writer and political comic, got better on hospice and went off - due to better care?
6. My insurance covers 2 90 day stays on hospice.
7. There is "home hospice" and sometimes a clinic for full time or respite care.

Both my mom and sister were on hospice and I volunteer at one after extensive training.

The following website as a "frequently asked questions" section and is a national service for information.

http://www.hospicenet.org/

I hope this helps. Please know you are in my prayers and I wish you the best. Sincerely, Peg
 

Mary Helen Barr

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We avoided hospice for a long time, because we thought my dad wouldn't qualify because of participating in a study. We were wrong. The doctor had to give a diagnosis of 3 - 6 months, but our hospice said that the doctor has to say that, and not to worry about the number. (my dad seemed upset by the time limit). Hospice said that as long as you are not ACTIVELY improving, you can be on hospice. I wish we had gotten them sooner. It was wonderful being on hospice. As it turns out, my father only lasted about a month on hospice. they were so incredibly nice and helpful. Mary Helen
 

msde302

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Hospice is covered entirely once you're on Medicare, as well. If you get a nod for disability, you get medicare. Our neuro OKed my mom for hospice even though he said he believed she had longer to live than 6 months. He said it was pretty standard for ALS patients to go on earlier. We're in the slow process of getting a home health aid to come a couple of times each week. Right now, we just have a standing visit with a nurse who takes my mom's blood pressure. And of course, we now have an arsenal of drugs on top of the fridge.

It has been nice to have someone who I can call at any time who can give advice. That's certainly one great element of hospice. They do take much of the burden off the caregiver in terms of equipment, etc.
 

Icanmanz

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Hi hoping. It is so hard for us Cals or Pals to answer questions, or try to come up with ideas, because ALS is so strange. It affects so differently in Als cases! I do not know whether to tell you that I am glad they placed your husband on hospice, or that I am sorry they did. Als is such a bizarre disease. My dear son was placed on hospice on June 2, 2007, and he passed on June 3, 2007. I felt so cheated, it was a big heartbreak. My dear angel was so excited, he could not talk, but I could see the excitement in his eyes. He was using his voice machine, and he told the Als nurse, "I have started to like you already. Are you going to be my nurse? Will you come and see me tomorrow?" She said yes, and tomorrow never came, it did, but with a very sad turn. Als kills us all, Als and Pals. Gotta go dear, and regain my composure. May God bless you folks, and good luck and God's blessings with hospice.

Irma
 

Icanmanz

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I meant to say the "hospice nurse" and not the Als nurse. Sorry!

Irma
 

CindyM

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Hi Hopingforthebest. I cried when they recommended hospice for my Mom, because it is undeniable proof that she is getting worse and will not get better. But then I cry at a lot of life events, both happy and sad...

But they have been wonderful. They really try to do whatever she needs that calms her or brings a smile to her face. And the CNA care they provide is a big help. It is so nice to have an extra pair of hands around, seeing that Mom is totally dependant for every aspect of her care.
 

hopingforthebest

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Thank you for all replies. Everyday one of his co-workers picks him up at our door, puts his seatbelt on him and takes him to work. He is now confined to working at his desk with use of speaker phone, dragon computer etc. He amazes everyone and is so loved by his co-workers. I pack 3 ensure plus shakes and small snacks, feeding himself is difficult but the women at work help him with this also. I see God in each one of them.

I want him to stay home now so I can enjoy "time" with him but it has to be when he is ready. He is looking into things to apply for disability but praying that it be soon. He is one of those guys that feels others are much worse off then him. Breathing is tiring him and doesn't get on bipap until he gets home.

Hopefully, hospice will help him speed up this staying home process and of course, ALS clinic is a big help. He just has to submit to the help portion.

Thanks again.

Patty
 

trustinggod

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Don't wait too long

Hi Patty,

At the risk of scaring you I wanted to chime in here and say that my experience was
that when the numbers hit the twenties it's "getting close" if no invasive breathing help
is used. Linda went from 35% to 25% within two weeks time and then she became extremely short of breath and her ability to speak (so that we understood her) was lost within a week or two. By the time she was at 22% she needed to use the ativan and morphine to keep her from feeling "air hunger" and within days, she was gone.

I know that everyone experiences ALS differently and your husband sounds like he's still doing fairly well. Linda's ALS began in her feet and progressed over 4 1/2 years to the point that she could only move her eyes.

So, don't wait too long . . .

God bless you,
Jeanne
 
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