Lessons (re)learned

I’ve spent the bulk of my time over the last (more than I care to tally) years taking care of various generations of my family, which has involved a lot of interfacing with medical, educational, financial, insurance, religious, and other institutions. Since mid-December, I’ve been mired in dealing with issues around Paco’s health and his move from his independent living apartment into the assisted living unit of his senior community via a hospital stay and a stint in the rehab/skilled nursing unit. There has been an avalanche of problems with medical and caregiving issues, as well as the seemingly more mundane issues of changing addresses, getting mail forwarded, etc.

The intensity of it all has reminded me of lessons I once knew about dealing with institutions, but had managed to forget until they were in front of me, again and often. A caveat on the following list: some institutions or, perhaps more precisely, some individuals within the institution do manage to react both competently and compassionately to individuals in difficult circumstances, but this is more the exception than the rule in my experience.

  1. Institutions are set up to deal with things that fit a certain pattern. If your situation is different in some way, they don’t adjust well – or at all.
  2. Institutions care more about their rules, dogmas, and self-perpetuation than they do about you. This holds true, sadly, even for medical, caregiving, and religious institutions.
  3. Institutions are slow to react to changing circumstances. An example: insisting that you have a special form notarized in order to process an address change, even though you are already sending them a durable power of attorney and a death certificate proving that you have legal authority to do so, when, during a pandemic, this adds personal risk to their client and the notary.
  4. When an employee of the institution makes a mistake, the person can follow those instructions to the letter, but the consequences of the mistake will redound to the person or their loved one. The institution will not make allowances for their employee’s mistake and make things right, even though you were acting in good faith and doing what you were told to do.
  5. Lots of balls get dropped. You can been assured that thing X will take place tomorrow, only to find out the next week that it hasn’t – and that no one remembers that it was supposed to have taken place.
  6. It’s very difficult to get accurate information through when it needs to be relayed through multiple people. I can’t tell you how many times the answer to my question has no bearing on the question I actually asked.
  7. People hear what they want to rather than what you actually say. This is a corollary of point 1.
  8. Institutions don’t want to accept responsibility for their decisions, policies, and errors. They will blame you or the computer or something other than themselves. In New York State, they often blame Governor Cuomo.
  9. Institutions are defensive. A neutral re-telling of facts can be taken by an official as an accusation. This is a corollary of point 7.
  10. Institutions think they know more than you do. Sometimes, this is true. However, it is not true that they can understand someone as well after fifteen minutes of interaction as you do after knowing the person for years/decades.
  11. Having to do everything at a distance makes it harder. While some things are best handled electronically or in writing, others are easiest to take care of in person. One particularly gut-wrenching aspect of our current situation is that we can’t see Paco in person, so we can’t keep on top of what parts of his care plan aren’t being consistently followed. When I do see him and see that he hasn’t shaved for several days, it’s very disconcerting, knowing that someone is supposed to be helping him with that daily and that he isn’t able to articulate that to me or the staff himself. See points 4,5, 8, and 9.

I wish I could say that my relearned lessons made things easier or less upsetting, but they haven’t. I’m tired and frustrated and dreading the next set of problems/tasks awaiting me this week added to the unresolved things from last week.

Wish me luck.

I need it.

24 Years of Lessons Learned

The nursery rhyme tells us that “Friday’s child is loving and giving.” While I don’t universally subscribe to the accuracy of nursery rhymes, as all Wednesday’s children will be grateful to hear, in the case of my younger daughter, who was born twenty -four years ago yesterday on the Friday before Trinity Sunday , the nursery rhyme was definitely true.  We didn’t know her sex until her arrival, but we had chosen the name Trinity for a girl, after a high school friend. It was an extra bonus that she was born so close to Trinity Sunday.

Her birthday this year fell on Pentecost, and at early morning Mass where she was both singing and ringing handbells, I began to reflect on the gifts that she has given to me as a parent and a person. (I recently wrote a post about the impending end of the resident-daughter-in-church-choir era here.)

Trinity reinforced a lesson I had begun to learn from her older sister:  that children come as their own individual selves, with a large portion of their temperament already formed. Even before she was born, Trinity reacted strongly to her environment. For instance, she would startle markedly in utero if there was a loud noise nearby. As an infant, she was so sensitive to sound that she would awaken if someone across the room turned the page of the newspaper.

This sensitivity extended to people and emotions as well. It was clear at a young age that Trinity had a social conscience. I remember her playing with paper dolls and creating conversations between them, as though performing a little play. She told me that this doll worked at helping people who were poor, but her sister liked to have lots of nice clothes and things so she had a job where she made a lot of money, but she also gave money to her sister that she could use to help people.

Trinity’s empathy also encompasses the environment. She went on to major in the Science of Natural and Environmental Systems at Cornell and will soon start a master’s program in Conservation Biology at ESF, with a goal of restoring native species to ecosystems. Her empathy does not extend to harmful invasive species!

Trinity also taught me the importance of solitude. Perhaps because she was so sensitive to the world around her, as soon as she could crawl, Trinity would sometimes go off to her room to play alone. As she got older, there was always solitary reading, writing, thinking, dreaming time built into her day. This alone time is vital for keeping her sense of personal balance and I expect will remain so. Her example taught me about being alone without being lonely.

Trinity was also spiritually aware from a young age. She was blessed with a sense of prayer and connection with God as a child. Unfortunately, dealing with the church as a human organization is more complicated. Her place in the church was severely tested in her early teen years, when we left our home parish over an emotionally abusive and unstable pastor. Trinity was halfway through the two-year preparation for her confirmation, so we joined a parish where many of her high school friends were members, so that she would have familiar classmates for the final year of preparation. It was still very difficult to decide that she wanted to be confirmed in a church that had hurt her and many friends and family very badly. She also had to write a letter to the bishop who had refused to protect us, asking to be confirmed. I never read the letter, but she apparently forthrightly told him of her struggles with the situation. She did decide to be confirmed and receive the fullness of the Holy Spirit, whose gifts she displays in her own quiet way. The red vestments and banners in the church, the symbol of the tongues as of fire, and the readings and prayers of Pentecost reminded me of her confirmation and her spiritual gifts yesterday on her birthday. Next Sunday will be Trinity Sunday, so I’m sure more reminders are in store. Each of us is a child of God in our own right; Trinity has always clearly shown that being my child does not make her God’s grandchild or child-once-removed, but always her own unique reflection of the Divine Light.

In other ways, Trinity has taught me to patiently and quietly deal with suffering. When she was sixteen, she was hospitalized for a week with severe colitis, which was diagnosed as Crohn’s disease. I stayed in the hospital with her and she was such a good patient, despite pain and some pretty harrowing test prep protocols. Given that we were already dealing with a chronic illness with her sister, Trinity’s diagnosis was a big blow to our family. After catching everything her sister had brought home from school before she was old enough to go to school herself, Trinity had been remarkably healthy during her own school years, so her level of equanimity in the face of illness was amazing to me. The next two years were filled with side effects from meds, follow-up tests, second opinions, diet changes, concerns about health care facilities when looking at colleges, etc. Finally, after transferring her care to a gastroenterologist near her college, she was put on a carefully monitored program to cut back and out the medication she was taking, which revealed that she did not have Crohn’s disease after all, for which we are all very grateful. I will always remember how calmly and maturely she dealt with a very difficult situation and an uncertain future.

I should probably close before I risk embarrassing Trinity any further. I don’t think she reads my blog very often, so perhaps she will be spared. Thank you, Trinity for the privilege of being your mom for the last twenty-four years. I wish you a great year to come, as you embark on grad school. I’m sure you will keep learning and that others will learn from you by example, as I have.