WHEN A GOOD CAREGIVER GETS YOU OUT ALIVE

                                                             Barbara, chief caregiver

     There’s this to add about the last few years, that having become a vulnerable adult in an able world, I must issue these warnings, this guidance and this appreciation, that without an able advocate, we are alone.

    For example, that first week in the nursing home with my second broken leg, there were the bedsores. And then there was the air mattress that got deflated so I wouldn’t fall out of bed during something referred to as the “bear hug pivot transfer.”  All I had after that was the foam rubber mattress my caregiver (notice, my caregiver) brought from home to place on top of the hard nursing home mattress I got as part of my package. 

    Oh yes, I did get the medicated bedsore patch without a quibble, at least nothing like the quibble over the boiled eggs I needed a doctor to authorize.  I asked my caregiver to bring in a dorm-sized refrigerator to provide familiar food, but then the door to that refrigerator had to be locked. (Nursing home rules). We were permitted a key.  So Barbara packed a camp box with ice to contain a day’s supply of the food, available on the table next to my bed. I was saved, though the aides still had to add ice.

    I also determined that a better solution than waiting and waiting for help with the bedpan was to organize my own in a plastic bag tied to my bed rail, with my shoe tied by its shoelace, so I could turn myself over to change the bedpan and the pad on my own. But that was our solution, not the nursing home’s. The nursing home just decided bed rails were dangerous and had to be removed! They did agree to wait with mine until after I was gone home, but what about all those others?

    We knew what happened to residents with no family members or caregivers to speak up or do for them. We could hear the shouting down the hall as aides berated residents for wetting their beds. We had to wonder, where were their diaper pads? Where was the training in compassionate care? Does a nursing home which collects $6000 per resident per month lack the financial wherewithal to keep life civil for its helpless and vulnerable residents?

   I never knew if the nursing home crew appreciated the fewer calls from my room. They were still irritated that they still had to clean up the bedpan and complained that my closed-door-room was too hot, that I kept my window open to the late summer and early autumn air. It was unheard of for anyone to refuse air conditioning, what I called the policy that sick and suffering elderly residents had to bundle up in heavy sweaters, risking pneumonia, just so the nursing staff, 40 years younger, could be comfortable. But it was my caregiver who figured out how to get those windows open, just as it was she who brought in my air cleaner and dehumidifier from home so I could ward off the colds in the corridor.

    A person has to fend for herself. Aides could attend to me after all the other 60 some residents on our wing had been gotten out of bed and been wheeled or “walked” to the meals and back, and then again after they were back in their rooms and back to bed, usually by 9 p.m.  However, aside from physical therapy and the occasional bath, and with my own food supply, I needed far less help. I was therefore to consider myself fortunate, which I mostly did, even if I never could walk right again.

    Most of the other residents, at least on the rehab hall, were stabilized by a gait belt around the waist while they walked in walkers and many, I was told, needed help eating their meals in addition to getting to the dining room and back. They also needed help with the bathroom even if they didn’t use the bedpan. More than a few had alarms which rang if they attempted to get up and walk on their own, and then the aides -- never more than two to a hall -- had to drop what they were doing (seldom less important) and run to that room to stop the calamity.

   Still, the director of nursing insisted the place was “fully staffed” even if she knew I knew that’s what she was paid to say by a corporation determined to pry every penny it could out of the business of warehousing our nation’s elders for its shareholders. What the aides said was that there was no backup beyond one of them agreeing to work a double shift when someone else was “out sick.” And when the college students who had been such good help left to go back to school, the only new employees were haggard housewives who had no other choices. The college students were there to discern a vocation in medicine and were thus eager, interested and bright; the housewives were beaten, tired and sick of people wanting more dirty work done and more beds made for poverty level wages. 

     In between times, far in between times, were the registered nurses who dispensed the medications and checked on the pressure sore patches. Few as they were however, those nurses were the only ones with real answers and actual information. One helped me more than she knew by explaining from her years as a surgical nurse that periodic sharp stabs of pain in a broken limb indicated healing was taking place, not worse breakage. From then on, I could handle it.

    But in general there is perhaps no more noisy or unhealthy place to live than a nursing home and I did everything the physical therapy department taught me to do to get out of it before flu season started and the real contagion spread. As I had learned from my mother’s hard experience, staff comes to work sick as a matter of routine, “if they value their jobs.” I was one of the fortunate few, as was my mother, who had a crew to help when we got home.
     We had learned firsthand what some of the nursing staff told us, that even when doctors and nurses went to the state legislature as a group to lobby for better conditions in nursing homes, they were outvoted. The business and of the nursing home lobby is apparently more powerful even than the professional medicine which cares for its people. This is demoralizing not only for we who live there because we have to but also for the doctors and nurses who have to obey the same unreasonable rules to get us treated. So we do our own research. We are grateful that standard medicine sets our bones and nursing homes rehabilitate our disabilities when they can, but we know their limits. So, we get online and find out what's possible even without a doctor's orders.

    And I do understand that the megadose vitamins, the genomes, the myofascial and essential oils pain relief and the specialized, home-based hydraulic lift are about as far from standard medicine as it is probably possible to get, and as uninsured by Medicare. But they help.

   My psychologist may sometimes hoot, my internist may frown now and then and the neurologist does point a severe finger, but my chiropractor and my Priest are strong support. And I have caregivers who are good and experienced mothers of grown children (and grandchildren) who know how to fix things and find things and even get on the Internet. So, despite MS, osteoporosis and old age, and for as long as my money holds out, I continue to do my best (God help me) to live happy, healthy and at home.