My mother has dementia and had been with Interim s...
My mother has dementia and had been with Interim s home hospice program for about 5 1/2 months. As it often goes with dementia, her decline has been slow and progressive. In mid August, her hospice nurse called to discuss her worsening agitation, ongoing orthostatic hypotension (blood pressure drops when she stands), and recent falls. She suggested increasing her behavioral medications during the day, and we discussed the pros and cons as this could definitely worsen the orthostasis and lead to more falls. Nevertheless, it denoted a decline in her overall cognitive and functional status and we continued to brace ourselves for her end of life, at home with hospice support, as were in line with her goals of care.
HOWEVER, about 10 days later, I was notified that she was being discharged from Interim hospice because she wasn t declining fast enough and was still ambulatory. I protested, asking for another review, and was denied. I was told (on paper) that I would have an opportunity to appeal with a written statement. This was not true. I appealed and my statement was only verbal, obtained by someone who clearly wasn t clinical, and didn t understand the clear implication that increasing her behavioral meds denoted a clinical decline, also leading to an increased risk of falls in the setting of orthostatic hypotension. The appeal was denied, and she was discharged from Interim Hospice on a Friday.
An Interim hospice director (unclear what her actual title was) called me that night to say she was sorry and would investigate and, this is my cell, call me anytime.
The following day, as I was preparing a second appeal, my mother fell down and my poor 88 year old father was unable to get her up. Because he had no Interim hospice services, he called 911, but taking her to the hospital was not in line with our previously discussed goals of care. I called Interim (both the main line and the cell of the director), and to this day, more than a week out, NO RESPONSE (except a call from them to say they wanted a shower chair back).
Thank goodness for Agape Hospice. They came out on a Saturday, did an in person intake while maintaining COVID sensitive precautions, helped my Dad navigate getting my mom settled until I could fly out the next day, got her a hospital bed and a Foley catheter on a Sunday, and have since been nothing but supportive and helpful.
Interim s blatant disregard and disrespect for my mother, my father, and this horrible disease left us high and dry. As if the emotional stress of losing your mother to dementia isn t hard enough, to be abandoned in this manner is shameful.