Please Help Virginia with Hospice Aides

Hello everyone!

My beautiful mother was diagnosed with Stage 4 Pancreatic Cancer in  August, 2017. After a long, brave fight, she entered the hospice phase
of care in March, 2019.  

Much to my shock and disgust, hospice care in Suffolk County Long  Island, funded  by Medicare, has a severe aide shortage. Aides can only come          to her home for 60 to 90 minutes a day, for 3 to 4 days a week. They have  even cancelled on us a few times, on those few scheduled days, with little or no warning. 

Mom lives in HUD housing for seniors with very limited incomes. Under the advisement of the resident social worker, Medicaid employees and other seniors using  Medicaid-funded aides, I spent months processing applications, gathering medical records, and on hold with doctors and NY State           government,  to qualify her for  medicaid in hopes of accessing more aide care, only to find at the very end of that battle, that medicaid only pays for Managed Long Term  Care aides, and that patients in hospice are not eligible for MLTC. 

I was dismayed to learn from an elder care lawyer and two other social workers, that this is par for the course in Suffolk County for hospice  care. At a time   in life when home care is needed more than ever, hospice patients and their families are given next to none at home.  Hospice houses only take    patients  for one to two weeks tops.  This means the dying, who may need several weeks to pass, appear to  be left out in the cold if family can not care for them, even if they have worked and contributed to Medicare for their entire lives. In short, the system is designed to be a labyrinth,  and several   months are needed to navigate all the steps. Obstacles and trap doors abound in the system. And hospice aides have some of the worst  jobs with the least pay, making it unattractive.  Thus the shortage.

I have managed to work from mom's home for over a month, but as her disease progresses, her mental capacities are diminishing, and her needs are increasing, day and night. Feeding, sponge-bathing, dressing, changing sheets, attending to her ileostomy bag and foley catheter, rotating her position in bed, and simply assuring she is not alone, in addition to light housekeeping, are all regular and rotating                            requirements.  There are also the jobs of bill and income management  and shopping, reviewing care, medications and medical equipment with hospice nurses, meeting with social workers and more. 

I honestly do not know what hospice patients without someone who can stay with them, do out here. I have heard stories of people left lone in                apartments, or warehoused in low quality nursing homes with  little to no attention. There was no way I was going to allow this to happen to my           mother!!!!!

Virginia was once a struggling young single mother herself, who also  juggled a sick mother of her own and an Uncle with dementia, in
addition to caring for a baby; me.

I want to thank my mother, who sacrificed everything, with a final gift;   the dignity and security of a passing at home, in familiar, peaceful                             surroundings, with friends nearby and her only daughter by her side. 

 I think most if not all of us, want the same for our loved ones and ourselves. Having aides at home for more hours per day, would help make this            mission a success.