Hospice - what does he need first?

[brooksea]

I've tried searching the forums for the answer to my question, but I'm still afraid for us to make a decision.

He has the following:

BiPap
PWC
PEG
Adjustable bed
Speech devices

Can someone advise me on what else he could possibly need before I call hospice?

 

[Katie C]

CJ... I would talk to the hospice people and find out what they will and won't provide and go from there. For example, we already had an adjustable bed, but hospice would have provided it if we wished. In fact, they would have provided us a different one if we wished when he started hospice.

 

[brooksea]

Thanks for the very logical answer!

His Internal Med Doc suggested a certain hospice because they had a facility nearby, in case he got pneumonia. She explained this would be better than the hospital and I agree. He wants to go with a different hospice that is associated with a hospital.

I guess I just can't bring myself to face this.

 

[grandmommyk]

This sounds very basic, but the one thing Hospice didn't provide that Rick needed was a special bath/shower chair. They had the regular bedside commode that wasn't on wheels, but that didn't fit his needs. Rick was and is very stubborn. He has fought every device until he could no longer make it without them. He would allow the VA to get things for him just in case but would refuse to use them. Rick transferred to the potty/shower chair by rolling his PWC into the shower, having me push his upper body forward, then he would hold to the shower grab bar with his wrist more than his hands and stand up. I then rushed the PWC out from under him and rolled the shower chair under him before he collapsed back on it. When he was ready, we reversed the process. It did not give me time to lift and place a standard bedside commode under him.
This summer he got to the point where he could no longer bear weight at all for any length of time. Now we use the lift. I may not be doing this right, but I can't get it under him to where his back is straight when I set him back down. With his back curved, if I try to sit him on a regular straight back potty chair, his back hits the back of the chair and leaves his hiney too far forward to set him down on it. The VA said this is a common problem and got us a reclining shower chair. This thing costs about $800. I am not sure if it is something medicare pays for or not. Then again your situation is different and maybe you will be better at this lift and toileting thing than I am and won't need it.

 

[lgelb]

A CoughAssist comes to mind just in terms of big ticket equipment, CJ. Not sure if this applies or not. Maybe talk to his pulmonologist and see if s/he foresees needs like this during the hospice period.

 

[chriss]

A hoist was an essential piece of equipment for us,

Cheers

Chris

 

[judyroyalglenn]

Thinking about ya'll! Judy

 

[Sequoia]

cough asssit and suctioning machine come to mind....as well as a hoyer lift. CJ praying for you!

 

[notme]

I:m so sorry you're having to deal with all this, hon. Please check and get as much information and references before choosing an agency. Non-profits are generally more caring, I believe.

As already said--think down the road as to things like shower chairs, cough assists and lift installations. Think of hospice as kind of taking some of the load off of you and making your Pal more comfortable. I can't imagine what you're going through. They might be able to get you a special mattress that will help prevent pressure sores. The air mattresses.

 

[ReneeM]

CJ
I am sort of in the same boat. Currently under Blue Care network they pay for home hospice 100% which would give him a bed, comode, lift.... However... he has not had his peg yet and will soon or does not have a bipap... and needs it too.

Clinic is next week... can't come soon enough

He does not get Medicare until Feb 2012 since he was just diagnosed August 30 and worked until the middle of August. His progression is VERY FAST.... May just have to go with our current coverage for Hospice.. and just pray he makes it to February.. then worry about the change over then.

You are in my prayers.... say one for me!

 

[momap53]

Our local (non-profit) has a 12 bed facility that can be utilised if there are problems that need 24 hour attention until they are resolved. It's also available for Respite Care 5 nighs and 6 days each month if beds are available. We can drop off and pick up or our Hospice Social worker will make transportation arrangements.

 

[mysticunicorn66]

Cough assist, hoyer lift, suctioning machine (though check with your local/regional ALS Chapter--they might have a cough assist or at the very least a suctioning machine for you to borrow. We give sis bed baths as a tub or shower is just not feasible for her, but might want to look into specialized chairs for shower/bathtub as well. I do know that our hospice would not provide a power chair, speech device. They also told me she would have to come off hospice to get a PEG.

 

[TRACEY'S MOM]

Definitely ask hospice, but ask your local ALS group as well. Tracey had a shower chair and other helpful devices that were loaned from the ALS "closet".

 

[Jeannie]

CJ~
When we called hospice they were amazing. They came out the next day and we had a family meeting. They said that they bring in all of their own devices, bed, suction machine etc.... The prob was my MIL couldn't accept the fact the her time was ending and refused them. She died a few months later. I wish from the bottom of my heart that she was able to experience the love and compation of the hospice people and maybe it could have helped her accept or deal with the fact that she was dying. I think too that they are wonderful family support which I feel my husband and his siblings we in need of. I wish i lived near you so I could help.
You are always on my mind and in my thoughts and prayers.
In friendship
Jeannie