Let me be blunt. End of life care in this country is horribly dysfunctional. The problem is that you won’t realize how maddeningly dysfunctional it is until you have to navigate its many dead ends roads and potholes. As tempting as it is, I won’t name names of specific institutions or individuals. That would serve little purpose other than as an outlet for personal frustration, and that is not my intent here nor would it honor my father’s memory. My purpose it to share some of our experiences in the hope that it may benefit others who will inevitably travel a similar path.
Elder care presents some basic choices:
- Care for an aging parent yourself at home.
- Hire an aide privately and self-pay to assist with care.
- Contract with an agency privately to provide aides.
- Contract with an agency through Medicaid.
When my father was ready to be discharged from the hospital in December, he was too weak to return to his apartment. He needed supervised and ongoing rehabilitative care if he was going to maintain any semblance of independent function. Dad therefore elected to go move into a local rehab facility in order to transition back to the apartment. Let’s call it the Empty Nursing and Rehabilitation Center of Jamaica (NY).
It would be fair to say that the staff at this facility was of questionable competence. The irony is that my father elected this facility because he had some personal connection with the management there. On a number of occasions, when I went to observe his PT program, he was sitting in a wheelchair parked next to other aged and infirm patients, largely left alone due to the number of patients who far outweighed the number of therapists. As one reverts to a childhood state in these late years, sometimes the patient has to be pushed to activity even when he doesn’t feel like it. To do otherwise is a form of benign neglect.
The Social Service Department at the Hospital visited with my father and with us before he was discharged, and promoted the services of an Agency that would provide an aide for his stay at the Rehab Center. This person would be a companion for 12 hours per day as an advocate of sorts, form 8 AM to 8 PM. Within his first week of his stay, he pushed the buzzer for assistance to go to the rest room. After waiting patiently for 20 minutes for assistance, he tried to get up himself and took a nasty fall. We can’t be sure how long he was on the floor before someone appeared, but after that episode we realized he needed an aide serve as his voice on a 24 hour basis.
With the exception of one or two, these aides turned out to be virtually useless. They were not allowed to assist Dad, because of potential issues medico-legal issues. But sometimes we would visit and finding them sitting behind my father, or talking on their phones, making a mockery of the companionship role. This for $20/hr ($28/hr on holidays), 24 hrs/day, 7 days/week. That’s $3,360 per week!!! You konw these poorly skilled laborers couldn’t be making much – but someone was being compensated handsomely. After Dad was released from the Rehab Center to return to his apartment, the Senior Agency continued to drag their feet on filing for any Medicare Reimbursement. However they never missed a beat in processing the $3360 per week charges through our credit card which Miriam and I had to give them in order to retain the Agency.
My father agreed to set up a trust too late, having lived adequately off his retirement account and monthly social security check. It was a nightmare trying to get him public assistance because his wife pre-dated him on Medicaid and the family had set up a trust for her years before. That meant the rules to qualify Dad for Medicaid were complicated, and we hired an advocate who was recommended to assist us. Unfortunately he misrepresented what he was able to do, and the time frame in which he could accomplish it. Dad’s retirement savings were quickly depleted.
The money is not the principal issue here. While Dad never wanted to be a burden to us, our primary concern was that he remain as comfortable as possible while he was visibly slipping away. Seeing him grow gaunt and almost listless at times, particularly as each day wore on would have been tolerable were it not for the aides who did not accord him the respect and dignity to which he was entitled. Once back in the apartment, my stepmother’s aides fought with his aides. Even toward the end, when provisional Medicaid came through after months of waiting, and we used the same agency for both 0ur parents, the aides continued to be an issue. They should have engaged him more. They should have taken him out for fresh air. They should not have taken their frustrations out on him. Even if we had installed a “Nanny Cam”, as we had urged him to consider, I’m not sure that would have solved the problem, though in retrospect it was something that he decided to forego that may have helped the situation.
Here is a basic checklist you must master if neither you nor your aging parents are independently wealthy.