It is one thing to have a good discussion with your 88 or 89 year-old mother about end-of-life issues. It’s quite another, my 50-something (and favorite) cousin reminded me yesterday, to live through them.
Quite another. In fact, she said she wasn’t sure how she was going to do it, how she was going to keep-on-keeping-on for one more day or one more week or one more month – nobody knows for sure – as her mother dies. There. She used the word. She’s not using euphemisms like “failing” or “declining” or “slipping” or even “giving up” anymore. Medically, it is apparent, her mother, now 90 and suffering from heart failure and multiple myeloma and a cold, among other things, is dying. Her chemicals are all out of whack. Her strength and energy are depleted. She slips in and out of sleep. She rallies for grandchildren and great-grandchildren and to observe, “Are all these people who sent flowers going to be disappointed if I don’t die this week?” But she is dying.
“She’s old,” her 87 year-old brother declares by way of explanation. “We’re all old. We’re all going to die.” Suffice it to say this brother, my father, and I have not had the same good discussions my cousin and aunt had about end-of-life issues. But he has made it clear that my sisters and I won’t experience my cousin’s same struggle with the nitty-gritty when he dies, either. He watched my mother enslave herself to my two grandmothers’ care – first one’s, and then the other’s – and he knows the cost to her health, his marriage, and his life after retirement. He won’t do that to his children; we have no vote. I probably should thank him; he means well, he really does. But I also feel I’ve been rejected, that in my life-long quest for his approval, i.e., his love, I’ve failed the final test of filial devotion. He will not even entertain the possibility that my sisters and I, the three people left on this earth to love him, might bring some quality of life to his remaining days with our love and laughter, that it might just be nice in your final years, as a recent article in the Wall Street Journal suggests, to be surrounded by your family, the people who care about you, the people you’ve cared most about.
The strange thing is, my cousin is afraid she’s failed as a daughter, too, even though she and her husband moved my aunt into their home five years ago, restored her to health, and with every subsequent decision, have paid tribute to her matriarchal status in the family and in their community. They provided friends, bridge games, travel, family reunions, birthday parties, weddings, great-grandchildren, and cooking assignments – myriad reasons to live – and if, on occasion, my aunt complained, “You know, it’s just not the same when it’s not your kitchen. I just do what I’m told,” she was, generally, happy and much healthier being taken care of than when she lived on her own and tried to take care of a grown son. For that matter, my cousin complained every once in a while, too. “I have no life,” she would say. Or, “I don’t know why we have to do everything, every minute. My brothers are useless.” And then she would feel guilty – as if, by having these feelings about the situation she was in, she wasn’t doing a good job.
The fact is, she noted, there are no measures of success when you’re caring for an aging parent. Good days and bad days, to be sure, but no progress, and little thanks. Even good friends say the wrong thing, like “Why don’t you put her in a nursing home now?” And even her mother, a relatively sweet and easy-going woman, can be difficult and irrationally demanding, as when she refuses care-taking from anyone except her daughter and grand-daughter. “Please don’t let anyone else touch me,” she cried the other day, the day my cousin despaired of being able to carry on, she was so exhausted from sleeping (or not sleeping) in her mother’s bedroom, and bathing her mother, and feeding her, and fielding phone calls, and talking with doctors and nurses and deciding if it was time to call in Hospice, and trying to cook and support her husband, a contractor who was preparing a bid for an important new job. Her successes are tiny: her mom can still get to the toilet with help on her walker; she could spar with her brother about who was going to get to the pearly gates first; and she said she was happy to have awakened that morning in her bed and not in heaven.
If, as we are told, Love triumphs over all, my cousin will be fine. She will miss her mom – her presence, her reassurance, her wisdom and knowledge and perspective, her wit, and even her relentless neediness – but she will know she did her very best for her, and that her relationship with her mother was, in part because of these last five years, as loving, generous, and complete as it could possibly be. I hope she will take the time to remember all the challenges, though, the really, really hard parts of being both daughter and caretaker, and write them down to share with us. This past week she would have given almost anything to know how other daughter-caretakers coped, to find affirmation in others’ choices, to find options in others’ arrangements, to find comfort in others’ concerns and complaints, to find support for what she was doing and how she was doing it, just to know she wasn’t alone in her grief and frustration. Every choice she has made – and will make these next few days or weeks – is as intimate and personal as these things get. There is, obviously, no one right way to care for an aging parent, even at the very end of life. But there is a way we can support each other as we do it (and, one way or another, we all will be doing it): by sharing our information and experiences and our feelings as daughters and caretakers and, when we aren’t in that role, by remembering our friends and sisters who are, and offering them respite – a shoulder to cry on, a kind word, a date night out, a meal, a good book, a belly laugh, the gift of friendship even when they don’t have time for it. There’s a huge gap between what we know and what we need to know to make our way through the end-of-life issues; let’s start filling it.
