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azgirl

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We met with a hospice provider yesterday and I am struggling with the decision to sign on. Really the only reason I am considering it is to get the morphine in the house to help with a peaceful pasśing, not that I'm ready for that quiet yet. I do not want to give up my neurologist and RT either

My support system is large and includes full-time caregivers and lots of help from family and friends. Spiritually I feel solid. So I don't need those hospice services.

The intake nurse knew nothing about ALS which was obvious from her comments and questions. Don't know what to do because I fear choking to death and I really want the drug assistance to make this next step as peaceful as it can be.

Any advice?
 

KateEmerson

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Would your neurologist prescribe the morphine and some Ativan for you to have at home?
 

Nikki J

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You could interview other hospices.

You also may not need hospice if your neurologist and or primary physician will work with you so that if you need it you have access to whatever you need for comfort.

If you go without hospice it helps a lot if in addition to a supportive physician one or more of your team includes someone who knows enough medicine to recognize changing needs and will advocate for you.

You need to feel comfortable that your worst case scenario will be handled. If it takes hospice to do it then early is better. Hospice should not be last minute / last few days if it can be avoided.
 

KW1234

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Hi Azgirl

I just went on hospice.
My neurologist insisted he be the physician of record, not my pcp. So he is part of the care team. The pulmonologist I saw before Christmas prescribed me a huge quantity of morphine. I tried it once but didn't like that it suppressed my cough ability.

Karen
 

KW1234

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Also the group I went with had ALS e
 

affected

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Kay I would interview every possible hospice in your area to check all your options. I hope you find the right mix to get the best team possible.
 

lgelb

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Any doc who has seen you can write morphine/Ativan. If you have a strong support group, once the appropriate rx are at hand, I don't see that there is an intrinsic need for hospice unless it helps your caregivers. We didn't use hospice and rx were written by our internist since we were no longer going to the ALS clinic.
 

bigmark1954

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Hospice is something that is often put off until the final stages. I have heard of people who just start it before, just to be ready and know when the end is near.

Sounds like your support system is good for now, but you might want to get prepared.

It is a huge decision that seems so unfair.
 

KimT

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I know a PALS who was off and on hospice for more than two years.

My local neuro said he would prescribe any medication I needed to make me more comfortable
 

tripete

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I like the "included" weekly massage. For me it takes some work off of my wife. The ALS assoc. here did interviews with all the local Hospice groups and had them answer questionnaires. They recommended to me the one I ended up using.
 

chally

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Well I just might be the first to git thrown off hospic cause I wasn’t dying fast enough,

They were nice people but really didn’t understand this nightmare at all I thinkthefy are miore coo mfortabmle with cancer cases

Did git. Morphine but could git it from pcp

Don’t use clinic any more they were of no help.

Get comfortable azgirl any way ya can.

You hang hi n there girl
 

soonerwife

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When we went with hospice, it was more so for help for me... Neither Cliff nor I thought he necessarily needed to be on hospice.

Our home health group was very knowledgeable about ALS. They prescreened all the in network hospice providers our insurance had. They cut the list down for us to 2. I interviewed the remaining two and made a decision.

You can use them as little or as much as you want, I believe. You are the client. The nurse and aide told us they could come once a week and up to 3 times a week and daily later on.

Our aide only changed the bed, took out trash and refilled Cliff's supplies. I did all this personal care.

I also agree that if you are sure they can't be helpful to you, your dr can provide those drugs for you to have on hand as well.

Hospice supplied alot of our supplies as well, ie formula, gloves, wipes, meds, swabs, and many more things.
 

affected

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I think nearly all CALS benefit from having hospice involved, providing of course they are a good organisation that either understands ALS or is willing to learn (as we all learn it as we go!)

Yep they can provide meds, but as noted any doctor can do that - but having someone come into the home and work with you, the extra things can provide - massages and all the bits sooner mentions, the way you can decide how this will work for you, and the fact they should understand providing comfort care - all add up to a great support network well before the end is there.

Most CALS had little or no medical experience before ALS hit, so this can be really a blessing!

If your ALS association can help you choose well Kay I think it could make a big difference!
 

tripete

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I agrre that they have little to no real knowledge of ALS. I found that my visits to my clinic visits had become useless as well, so I stopped going. So at least Hospice comes to me and does take some burden off of my wife. I do not know how people get through this nightmare without the collective knowledge found here.
 

Manhattanite

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My hospice also had little experience with ALS and as a result they agreed to keep my PALS' neurologist as his physician of record.
They agreed to continue with the company that was providing our respiratory equipment, and in fact I think this taught them a great deal about the particularities of ALS.

This might not apply to all hospice providers, but try to negotiate what works best for you. We assume that hospice rules are written in stone but there might be room for flexibility.
 
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