I hadn't written about this previously because it upsets me SO MUCH.
Mike has been on hospice for about 3 years. We originally started with another hospice, but they decided to "dis enroll" Mike on a weekend when we needed them the most (Mike had been sick with fever for 2 days, one of their nurses had come to our house over the weekend and by that Monday Mike was very ill and on his way to the hospital. Still they felt that his condition was "stable" and felt he didn't qualify for hospice any longer. After that hospitalization, on his return home, we changed hospice agencies).
Way back when Mike was admitted to hospice (through both the first and current agencies), I remember they seemed to be confused because Mike would now not only be a Medicaid patient, but also a Medicare patient (hospice is covered by Medicare). Through the years and as Mike's condition deteriorated, his hours approved by Medicaid had increased. By the time he went on to hospice, he was approved for 10 hrs/day 7 days a week. He was actually approved for a live-in, but we have no place for them in our home. Hospice (Medicare) provides up to 4 hours a day of aide services. Hospice provides 4 hours a day 5 days a week. So, it was decided that Mon-Fri, Medicaid would pay 6 hours and Medicare would cover 4 hours. Medicaid would cover the weekends.
All was going well (or as well as can be expected when you deal with aides and home health agencies) until about 3 weeks ago when the nurse from hell entered out home.
Mike was due for his re-certification for Medicaid, as is done once a year. In the past we never had any issues. The nurse from social services would come to our house, confirm that Mike needed the care, had me sign a few papers and was gone within 10 minutes. The issue of payment for services and how it was handled was never an issue until...........
Nurse Ratchet came for certification and raised holy hell. She came into our home looking for trouble and quite honestly, I felt as though she was accusing us of stealing services. She questioned EVERYTHING!!! She kept asking over and over again how the payments were made. By the third time I was quite annoyed. I simply looked at her and said, "My job is to not figure out how payments are made. That should be an internal job between agencies. My job is to take care of my husband, raise my children and keep my house running". Still she never relented. At one point she even went in to observe Mike and asked that I lift up the blanket (to keep him warm) so she could "see his arms". She followed me around and at one point, when I was soothing Mike after he coughed, she yelled at me to come back into the dining room to continue to go over paperwork with her. I knew when she left that things were going to get screwed up and I was right.
The next day I started getting calls from everyone - home health agency, social services and hospice -all asking ME about the billing issue. Really? Did you see my husband? Do you think I care about how they split up the payments? Is medical billing now MY job?
Another week went by, and still I hadn't seen any visible problems. Then last Friday at 4pm I get a call stating that our home health agency who had been servicing us with aides on the weekend for 5 years, could no longer provide coverage for Saturdays and now hospice would be providing coverage. We had JUST gotten used to the aide working with us on Saturdays and now they were pulling her for someone completely new to Mike and our family.
Now, you can say we are lucky that at least we still have services and you would be correct. The issue I have is that Saturdays were my catch-up day. Time to do work around he house, run errands etc and now they are up in the air as I to be concerned each week as to whether I would have coverage. They found someone for us last week, but as I sit here now at 3:33 p.m. on Friday afternoon, I STILL have not gotten confirmation that we will have an aide for tomorrow. I'm note sure if the aide that came last Saturday didn't want to come back, maybe they didn't ask her back. Maybe she wasn't available, but whatever the reason is, things are still uncertain.
Mike will be the one who loses out here. The aides always seem to get him to eat and drink better than I can and if we have no one, I know he will not do well. At this point in his illness, he cannot afford to go even one day without eating/drinking well.
I hope Nurse Ratchet feels proud of herself. She upset a system that had been working well for so long. I firmly believe that Medicaid a/k/a our government has no use for its citizens if they are "broken". I feel they do all they can to put people in nursing homes, rather than do all they can to help to keep patients at home. This journey has been long and difficult and just when I think I've seen it all, something else happens that amazes me.
I feel let down and forgotten despite the fact that I have saved our system SO MUCH money throughout the years in keeping Mike at home.