My loved one was eligible for hospice at home in another state with a 5-day respite care in a "hospice house". The accommodations were lovely with a single large room with fold out sofa for overnight family members, private bath and of course a comfortable hospital bed and common living room and kitchen for the 6 other residents in the hospice respite house. My husband seemed agreeable about leaving his home and being in this very comfortable environment for 5 days and came back smiling after the stay.
When we migrated to our home state for the warmer months, he was eligible for hospice at home similar accommodations alluded to except when it came time to do respite. The social worker making the arrangements for respite "booked" my loved one in a nursing home (overflow for non-emergency patients ) in a semi-private room, dark, tiny and cramped with a view of the hallway. The room mate kept the room dark as the room mate had control over the window. In fact, it felt like my husband was in the hallway the space was so cramped.
Besides being cramped and uncomfortable, my loved one is not going to want to go to those conditions next time which will compromise my "time off" (which I desperately need). I called and talked with the social worker who placed him (the day before the respite was to begin to no avail) and called the admissions woman at the nursing home claiming that the conditions were unsatisfactory, to no avail.
I learned that the hospice agency we are with is receiving $4000 per month from Medicare for their hospice services. Does anyone have any advice or experience to offer so I can advocate for more comfortable accommodations?
I don’t want to tell you about my experience with Hospice Respite 😞
$4000 a month that Medicare covers includes the Nursing Services, Social Worker, CNA's, Chaplin, medications, equipment rental, supplies, administrative services just to name a few for about $133 a day I could not provide the same for my Husband for $133 a day.
Is your Husband a Veteran? If so that might be an option BUT there again it will matter when you need the placement and where they find room when you need it. And there is no guarantee where he will be placed. (a friend was going to use the VA for respite and was told that they would not know until 24 hours in advance where he would be, they told her it would be one of 3 places none of them real close) Again it is all a matter of where they find an open bed. With the Hospice if the census is low when you request Respite they will place him in an In Patient Unit but if the beds are full they have no option but to go outside their facility.
$4000/month may seem a generous amount until you begin to compare the cost of self paid in home care (including nursing care), assisted living and nursing homes; my mother's respite stay in heavily gov't subsidized Ont Canada was $100/day.
I think your only options would be to look for a different hospice provider that might suit you better, or perhaps you may be able to pay out of pocket for an upgraded room.
Not all hospice’s have inpatient units at a hospital or their own hospice houses. There are 2 hospice facilities where I live-one is more of a home setting and one is larger like a nursing home and they are not owned or operated by the hospice companies that come to your home. The hospice companies don’t have a floor or unit in any of the local hospitals either. If someone is on home hospice and needs respite, they go to a nursing home. There is one hospice provider that works with nursing home patients and the other is through the visiting nurses association.