There has to be a better way to grow old.
My father, at 90 years old, is at the end of his life and can no longer do, what the health care industry calls, “the activities of daily living”. Dad can not walk unassisted; needs to be catheterized to urinate; needs someone to wipe him after going to the bathroom; needs help to dress and getting up or down from a chair; needs to be held while he walks so that he does not fall. The last activity of daily living which he still can do is to feed himself, but even that function is rapidly fading. He is sleeping fifteen to eighteen hours a day. The one good thing about this part of his life is that he is not in pain and seems happy.
My mother, at 89 years of age, is the primary caregiver. Trying to get appropriate care for my dad is stressful and exhausting. Last night the agency that sent the overnight home health aid notified her at the last minute that he had to leave at 5 AM this morning rather than his normal 8 AM. My mother woke up at 7 AM, only to find my father sitting on the commode next to his bed. Somehow he had gotten himself out of bed and onto the commode but had soiled his pants in the process. It should not fall to my 89-year-old mother to try and get this man back in bed and cleaned up. She somehow got him back in bed but left him soiled for another half an hour until the daytime home health aid arrived.
My two brothers and their families are visiting for the holidays and we all decided to go out to lunch. The home health aid put my father in my car. At the restaurant, it fell to me to move him from the car to the wheelchair and back again after lunch. Dad was a dead weight and could not follow any instructions. After lunch, I wheeled him to the car, locked the wheelchair a foot from the car door, and tried to stand him up. He could barely stand and could not move his feet to get to the twelve inches from the car to the wheelchair. I had to give him a bear hug and lift and turn him to get him into the car.
Back at the apartment after lunch the home health aid and I planned to sit him on the bed while I catheterized him before his nap. Home health aides do not do catheters, so it falls to me when I visit or to my mother. We helped my father from the wheelchair, pulled his pants down, and sat him on the bed, only to realize too late that he had soiled his Depends, and now we had soiled the bedsheets. We moved him from the bed to the commode and the caregiver began the laborious process of cleaning him up. In the middle of being cleaned he moved his bowels again. Must I go on? We all get to this point in our lives and it is not pretty.
The dilemma is this. My father could receive more consistent care in a facility, but he would also not last long there. At home, my mother is stitching together round the clock care through two different agencies. She is the person keeping track of the schedules of who comes and goes. It is exhausting.
At home, my father is well fed and well cared for. At home, he gets a much higher quality of care, but the cost is that my mother is under constant stress, which is contributing to her own growing confusion and decline. In a facility he would be given a carb-loaded diet; isolated from family; and surrounded by anonymous caregivers, all of which would contribute to a rapid decline.
This is a story of my mom and dad but it is also the story of the health care crisis in the United States: the fractured, non-functional, health care systems that we navigate with great difficulty. Caring for an elder parent at home should be much easier and with greater continuity of care.
While our current government is trashing the health insurance guardrails set up by the prior administration, they have done nothing to improve our health care delivery system.