What equipment should I request before Hospice

[cubcake]

Hi everyone. My head is spinning!

Our doctor has suggested that we go on Hospice. From what I've gathered here, entering Hospice is a sort of "forever hold your piece" proposition in that all equipment has to be obtained before you enter the program.

We don't have anything short of a manual Transport chair, a shower transfer bench and commode rails, all of which we've purchased on our own.

Does anyone have any suggestions of other things I should request before going on Hospice?

Thanks, in advance. I'm not ready for this.

 

[brooksea]

Would a PWC be prudent at this time (would he use it)? Also, what about a BiPap and cough assist machine? I can't remember if your husband has a PEG, but in our case hospice did provide a feeding pump for overnight feedings.

I'm very sorry you are at that point. Thinking of you.

 

[cubcake]

Thanks, so much, for the reply. No, no PEG. He had put it writing years ago that he didn't want that, and hasn't changed his mind, going against my wishes. But I have to honor that. I was asking about a PWC with Caregiver controls, since his FTD probably makes any kind of motorized vehicles in his hands more dangerous than helpful. But at 190 pounds, I could use the help moving him from location to location.

Thanks, again. Be well.

 

[Lobster]

communication device (Dynavox)
power wheelchair
manual wheelchair
bipap
hospital bed
rolling bedside commode
pivot disk
transfer board


I hate this disease.

 

[lgelb]

Also, CoughAssist (mechanical insufflator/exsufflator) and the Vest Airway Clearance System.

 

[KrisS]

Add a suction machine to your list too. If he has FTD, you may want to meet with a speech pathologist to help with communication as it gets more difficult.
Kris

 

[cubcake]

Lobster, Igelb and Kris, thank you. Excellent suggestions and exactly what I was looking for. Kris, as far as the speech thing goes, he hasn't been able to say a word for almost a year. I should have mentioned we have an iPad, also. He uses that very rarely for communication. Mostly, he uses Sign Language and spells things out. It's interesting....they told me that learning new things would be impossible, but in February he picked up a book on Signing and taught himself the alphabet and has been using it, almost exclusively, ever since. At this point, though, I don't know how much what I say means to him, and his spelling is so attrocious that we are having a much more difficult time communicating.

It seems that Love and Trust are all we have left and luckily, that's enough. He is still in a Happy Place.

Thank you, all, for your suggestions. I appreciate it.

 

[mysisterskeeper]

I don't have so many problems with getting things from hospice. The replacement bipap was because of them and they swapped out all my sister's old equipment for their companies equipment that they contracted with. The doc even said he could get her a dif air mattress bed cause the one she has is so old and unreliable

 

[KTM40]

I also said that I would not use a PEG tube and then changed my mind closer to the time.
Hospice paid for it.

 

[cukita99]

how does hospice work n w ho pays

 

[cubcake]

Hi cukita99 - Our Hospice worker just left from our first visit. The short answer to your question is.....Idon't know. The more complete answer is....not us! We have Kaiser medical insurance, so I think that Kaiser is paying them. If we didn't, Medicare (or MediCal, here in CA) would pay. We no longer pay any co-pays or anything. So far, so good!

 

[cukita99]

great well i hve nothing

 

[cubcake]

By, "I have nothing" I'm going to take that as meaning that you have no insurance. If you are going to an ALS clinic, please see the Social Worker so she can help steer you to obtaining your MediCare benefits. Also, I know I'm no knowledgeable about this program, yet, Hospice seems like the way to go, and the sooner you get in, the better. Also, they seem to have more equipment available to us than Kaiser was ever willing to give us. Please check this out.

 

[Gill'sgirl]

We just went through this process with my mother, when we started using her Medicare hospice benefit. Before we started we needed her PWC and speech generating device and that was it. Hospice provided:

1. Hospital bed
2. Bedside commode
3. Lift chair/recliner
4. BiPAP
5. Suction machine
6. Hoyer lift

Best of luck.

 

[cukita99]

cupcake we dont hve ALS clinic n i dont qualify foor medicare