Unread 05-09-2011, 10:29 AM #1 (permalink)
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Default Final Stages? How do you know?

How do you know if someone is in the final stages? Hospice is only granted if the person has 6 months or less to live, but how is this determined.

My mom was diagnosed in May of 2009. She is completely paralyzed from the neck down, and is almost completely unintelligble while speaking. She cannot pucker her lips to kiss you and she can turn her head from side to side just barely, but cannot move it if it goes up or down. She can eat a little but not much and is not drinking much at all.

She's also severely depressed -- my stepdad is working on getting some anti-depressants for her. I am just wondering how do you know if it's end stage? What are the signs, symptoms? It is also difficult for her to breath.
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Unread 05-09-2011, 02:53 PM #2 (permalink)
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Default Re: Final Stages? How do you know?

Call her doc and ask for a hospice referral now.
In June, I will have been on hospice 6 months,if I am still here, they will have see my neuro MD
to examine me for recertification to contiinue with them. the 6 month rule is not hardfast
and several criteria are considered. Hospice has been a God send for me and my family.
blessings, Pat
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Unread 05-09-2011, 04:10 PM #3 (permalink)
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Default Re: Final Stages? How do you know?

Also, if you have a good, involved ALSA coordinator, that person can explain to a doctor how difficult it is with ALS to know the timing. My coordinator worked on my behalf successfully.
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Unread 05-09-2011, 08:12 PM #4 (permalink)
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Default Re: Final Stages? How do you know?

Just curious how often you all need to be re-approved for hospice? We are now on the every 2 month plan. It is so totally emotionally draining every time they come. I feel pathetic telling them how he has progressed in order to receive services. I would be lost without them right now. We have been on since last August. My hubby is still fighting.
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Unread 05-09-2011, 09:13 PM #5 (permalink)
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Default Re: Final Stages? How do you know?

Kelly, forgive me, as my memory is failing me, but is your hubby on a vent?
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Unread 05-09-2011, 09:27 PM #6 (permalink)
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Default Re: Final Stages? How do you know?

Kaiser's policy was 6 months initially, and then they would re-evaluate every 3 after that. I agree that asking your doctor for a referral sooner rather than later is a good idea... there are many areas they will be helpful with.
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Unread 05-10-2011, 06:35 AM #7 (permalink)
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Default Re: Final Stages? How do you know?

No, Andrew is not on a vent. He has not had his lung capacity measured since last summer and it was 30%. We have chosen not to take it anymore..as it is also emotionally exhausting to hear the numbers. He has decided not to vent..so no need to do the lung capacity. Amazingly, if you look at him..he looks healthy..besides the ALS thing.
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Unread 05-10-2011, 02:13 PM #8 (permalink)
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Default Re: Final Stages? How do you know?

Hi lisaohgee ,
I don't have an easy answer to your question but it has made me think about it a lot. My own answer is simply that you will know the end stage when you get there. I know that's not much good for any thinking ahead but as you get nearer the end I suspect the signs have to be read day by day. I agree with what others have said about hospice. They can be such a support and maybe even a help at reading those signs. Your dad's instinct on looking for some help with her depression sounds good to me too. I don't know if she is on bipap for a bit of assistance with her breathing? I would guess so but if not you might want to consider it, even if only for comfort. If not then you may need help allieviating anxiety around breathing difficulty. Those are my thoughts for what they're worth...sending love your way as you and your family face all this.
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Unread 05-10-2011, 03:24 PM #9 (permalink)
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Default Re: Final Stages? How do you know?

Thanks everyone for your responses.

She doesn't want to do anything to help her care. She doesn't want to be on the bipap. If she has decided she doesn't want to prolong the inevitable, I support her 100%. I am more hoping for hospice care so my stepdad can have some help. This is consuming his life and he can't even have a normal conversation about anything else without it taking over.
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Unread 05-10-2011, 05:40 PM #10 (permalink)
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Default Re: Final Stages? How do you know?

Lisa then it is time for hospice. They will help you all. Don't wait any longer. Blessings to you all.
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Unread 05-10-2011, 06:14 PM #11 (permalink)
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Default Re: Final Stages? How do you know?

Agree with Rox's post above--the time has come. And expect a week or two, possibly, of folks coming by to fill out forms and deliver equipment, before the real work begins.

Kelly, I'm actually only on my second week of receiving care--and when I see the RN and Social Worker this week, I will ask them what is needed insofar as assessment, including how often; that said, I have no doubt they'll keep me on. My Pulmonary doc told us back in September I could get started then if we wanted. I'm sure being assessed is stressful if Andrew looks so healthy. Truthfully, being showered is an entire day's worth of energy for me... and there is no stress involved. I don't know how Andrew can look so well.
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Unread 05-10-2011, 06:49 PM #12 (permalink)
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Default Re: Final Stages? How do you know?

I am reminded of a conversation: Me to Dr North: "How will I know when it's time for hospice? What are the signs?" Dr North: "The fact that you're asking. I'll write up the recommendation today."
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Unread 05-10-2011, 09:20 PM #13 (permalink)
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Default Re: Final Stages? How do you know?

I like that Katie.
Kelly- Im sorry. I dont really know what else to say. it really is heartbreaking and i wish it werent so.
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Unread 05-10-2011, 11:24 PM #14 (permalink)
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Default Re: Final Stages? How do you know?

Perhaps this might help

Preparing For Approaching Death

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