Real life is like a Kurt Vonnegut novel. You know, you are going along living your life, and suddenly you get popped over into another life. I’m out in California, spending the week with my mother, who in February found herself invalid, on oxygen and very weak, needing a walker to get around the house. She has pulmonary fibrosis and the prognosis is unclear. She was hit with an infection that laid her low, and she might be able to get back to relative independence. And she might not. A year ago she was still taking several international trips a year, and six months ago she was still running around and taking domestic trips. For me, it’s being transported from the world where I am way behind in my writing, have papers to grade and still don’t have the taxes done to another place where there isn’t really that much to do, just hang out and be ready to offer occasional assistance.
My mom and my family have to figure out how to cope. My mother is 80 and my dad is 81; they have been divorced for 30 years, but are on pretty good terms and live about 5 miles from each other. My brother, sister and I are in our late 50s. My two young adult children are the only grandchildren. I live in the Midwest; I’m here on my spring break. My sister lives about a mile from my mom and has been bearing the brunt of things. She has a full time job but works from home, so she has been able to do things for my mother, at the cost of adding to her own stress. But she and her husband (who just retired this week) are planning to relocate to Arizona, and they have longstanding plans to be in Arizona for most of April. So Sister is stressing and worrying about what to do about April. Will she screw up her own plans and agenda or will she leave my mother to cope alone with whatever patchwork of help she can pull together? My brother and his wife live an hour from my mother; he drives a UPS truck all day and with his commute works an exhausting 12-hour day. He’s been coming out on weekends and spent his vacation week coming over here, but that takes its toll on his health. Brother will take time off work to cover some doctor appointments while my sister is gone and use what vacation he has to help, but there’s not enough vacation to cover the whole thing. His wife is generous and helpful, but she needs knee surgery, cannot do much physical for herself, and fears that if she takes the time off for the knee surgery, she will lose her job from the Evil Employer who just bought out the firm, fired all the hands, and rehired them at lower wages and poorer benefits and no accumulated vacation or sick leave. Brother and SIL live in a small house and don’t really have room for my mother, and they are gone 12 hours a day working anyway. I and my children can come from the Midwest to help out in the summer, but not in April. My dad is still doing OK although he has cataracts, and my sister can ask him to do things for her, but it is not a reasonable thing to expect him to take care of our mother. It would be too hard emotionally on both of them. (He is sympathetic, because he cared for his second wife while she had terminal cancer, and also for another woman he was close to while she had terminal cancer. As he has said, he felt he was working out karma, but that is another story.) My sister’s ex-husband is still part of the family as he has few relatives of his own and he lived with my mom when he was unemployed, but he has recently remarried and relocated to a city 400 miles away. My mother has many nieces and nephews who have their own problems. The one niece my mom is close to, whom she just discovered a few years ago (the last child of her brother, who had cut off all ties with his family), is coping with her own husband’s cancer.
I know people who do research on long term health care issues so I know what the structural realities are. We are facing the same kind of thing that lots of families are facing, many with fewer resources than we have. Nothing we are facing surprises me nor makes me feel that we are in any worse situation than anybody else, but it brings it home. When my mother got out of the hospital, she could not be alone, so she and my sister hired a 24-7 health care aid at $225 a day. My mother has some assets but is not wealthy, and this is not a viable long-term solution. (There is a cheaper service that is $125 a day that they may try. They picked the more expensive one because they thought it was better if the people doing the work were earning more. But then you run into the ability to pay issues for the long run.) My mother does not need high tech help, at least not yet. Many patients are being sent home with families expected to do high-tech medical procedures at home that used to be done only by licensed professionals in a sterile hospital environment. So I know that things could be much worse. My mother can almost manage on her own, if someone comes by a couple of times a day to do a few things she cannot do and helps her out a few times a week with big jobs like taking a shower. But she gets lonely and feels scared and vulnerable because she is so weak. She could do pretty well sitting in the middle of a house full of family coming and going, as anybody over the age of 8 could do almost all the things she needs help with right now. But that isn’t how we live. So my sister is talking to the neighbor and a friend’s mother who just retired and trying to think about options. My mother has extra room in the house, we’ve thought about whether she could obtain help in exchange for housing. But she’d have to let that person really live in the house, and that would mean she’d have to give up control over how things are organized and how the house runs.
I’m not complaining. Aging and infirmity are part of life. I know from other research that many families find themselves forced to choose from among terrible options as they deal with these issues. Force your parent into group care? Quit your job so you can stay with your parent? Raid all your financial assets to pay for care? Divest the parent of assets and go on Medical Assistance? Look for low-wage exploitable labor? How do you factor the well-being of your parent and the well-being of others? How do you operate as a family when you live spread out all over the place and everybody has a job and a house? The important sociological question is this: What would good social policies look like to help people as they become infirm? At the moment, I don’t know the answer. But I do know that more and more people are asking these questions.