Possible hospice graduation

Lills

My DH has been on hospice since January 2020 and bedbound since 10/20.  He has FTD and ALS.  Two siblings near his age have died this past year from the same disease (gene).  He can't move in bed and can't talk.  The VA provides a CNA for 3 hours daily so that we can use a hoyer lift to move him into a recliner. 

DH's hospice eligibility is now in question since he has stabilized.  He hasn't recently lost weight, can still eat pureed food, can drink through a straw, has no fever, coughing at night has diminished, etc.  He does have swelling in his arms and feet. 

The PA will be coming the first week in January and will determine if DH can continue on hospice or whether he'll need to be served by a palliative care team.   If he 'graduates' from hospice, they will take away the hospital bed, lift chair and hoyer lift.  The SW will coordinate with the VA. The VA will bring their bed, etc. 

DH will be fine.  He won't know the difference.  I'm sure hospice will make the transition smooth.  BUT,  if this happens, I feel as though the rug will be pulled out from under me.  DH will lose hospice's music and massage therapists, CNAs and RN.  DH will get a whole NEW team from palliative care who don't know him. 

On the one hand, I understand that DH is not declining as fast as needed for eligibility but ALS and FTD are progressive diseases.  This seems so counter-productive.  

I'm trying not to borrow trouble...

Rescue mom

My mother with dementias “graduated” from Hospice when they said she’d become “too healthy” to qualify. You are right, it’s a huge loss. Hospice really is a blessing. I well recall how hard it was with getting new equipment, much less all the new aides. Her facility helped with some, but not much overall. Fingers crossed for you, it’s great the VA is on board.

ButterflyWings

I think we are right behind you. DH has only been on hospice for a few months and it has been a huge blessing. When the time comes for his next assessment I expect he will graduate back to palliative care. After a revolving door of lengthy ER visits, a couple of firefighter assists, and follow on marathon days & nights with me trying to manage rapid decline and his total incontinence and a terrible infection —he has pretty much stabilized and no longer has any infection, pain or need for the walker anymore since his 2 back-to-back falls. 

We already sent the bed and oxygen back. I am glad he is better but will struggle without the nurse, partial med support and incontinence supplies. Bowel troubles are gone but urinary incontinence (up multiple times per night) is still a biggie.

Your needs are greater than ours at this stage. I do hope they consider keeping your LO with the current level of support and familiar hospice team. 

Cynbar

If your hospice says they are discharging you, I would definitely appeal that decision, you don't lose a darn thing by doing so and appeals are upheld at least some of the time (I don't know the actual percentages but I know it does happen.) First your hospice will give you a discharge date. They then have you sign a "48 Hour Notice of Non-Coverage."Sign it even if you don't agree, it just means you've been notified.  On the back of this form is the telephone number to appeal, call as soon as you get the form and explain how hospice has been helpful to you. They will take the basic information from you, and then request records from hospice to review. This is done by an outside company, they really do seem to be impartial. The decision is made in a day or two, and hospice can't discharge until that happens. Don't hesitate, it is absolutely worth a shot. Note: your hospice should explain all this to you and show you the number, but ask if they don't.

Ed1937

Lills, I'm sorry you are now on another roller coaster. I think Cynbar has some good points. Hopefully you will be able to keep the services.

sandwichone123

Lills, I think you've got great advice on trying to keep hospice, and I hope you're successful. If you do end up changing services, ask your current providers to provide *you* with a written report on what they're doing with your dh, what has worked and what hasn't. At least you can hope to avoid some trial and error with the switch if it occurs.

JJAz

Call some other Hospice companies and discuss your situation with them.  Not all Hospice companies are created equal.  I have friends who were told that they were going to "graduate" and were evaluated by another Hospice and stayed in service.

Marie58

Thanks for this thread. I'm following it closely. My DH has been on Hospice since Sept and bedbound since mid-November. He's not really getting 'worse'. But he just sits/lays there until someone changes his position for him, feeds him, holds his cup for him, and every thing else. He really needs the hospital bed and the hospice staff. So do I! 

Lills, my heart goes out to you. I can't imaging your DH being bedbound for over a year.  I pray the dear Lord takes my DH sooner rather than later. Blessings everyone!

June45

Lills,

Exactly what Army Vet said.  Your husband should be on hospice and I will be horrified if they release him.  Stand firm.  But if they do release him, I would imagine that another hospice would pick him up without hesitation.

feudman

In response to the last two posts, having a terminal dx qualifies you for palliative care, but not, in itself, for hospice. They have regimented evaluation periods & guidelines for requalifying, based on measurable decline. It seems ironic that when clients reach the "home stretch," it is harder to requalify. I.E., weight loss is a biggie, measured at a specific spot on their arm. But once they're "skin & bones," how can they get any skinnier? Her RN, who is fighting to keep her on, recorded a 1/10th of an inch drop (I think she just pinched the tape).

We've been living this: on for 2 years, off for one, back on for 1-1/2 & very much in danger of being cut loose again. And yes, its unpleasant. The DME goes away & you must contract to rent them from a supplier who will (in most cases) bill you for 20%. You lose the aides, RN's, social workers, chaplain, volunteers, etc. Above all, you must find a PCP (at least to continue prescriptions). 

We've not tried the palliative care route; I've been told it's not nearly as helpful. And, like others here, we only have one good Hospice serving our area. So best wishes if you are able to persue those two options. Hospice isn't "the bad guy;" they must follow medicare guidelines or face stiff fines.