My visits down south to care for my mother are getting farther apart. The last time I was there I spent an entire two weeks with her. The last week of our visit was just the multigenerational force of mother, daughter, daughter, mother. The three of us, on our own time. I am still recovering. This was the longest amount of time I have spent with my mother since her decline. The reality is, apart from being her daughter, there is no need for me to be there on a month to month basis anymore. She has adapted to her care team and her wishes are being met. She is safe, she is content. This time, her living while dying time, is for her to enjoy. She no longer has a handle on time anyway. I consider this a blessing. She is not in the vice of time and the use of it. More-so, the lack of it. In her mind I was just there and when I return it will seem like it was just yesterday that I was there. Time is my enemy, not hers. And anyone who is caring for a parent will tell you, it is expensive. Another harsh reality when managing this new era of parent care.
There are books to tell you how to care for an infant; what to expect when you are expecting that bundle of baby about to emerge onto the scene. There are books detailing toddler life, adolescence, teen years; what to expect when your bundle of joy is now battling depression, poor study habits, bullying or drug abuse. There on books on how to survive a bad marriage-pending divorce and unsettled childhood.
There are not many books to tell you how to manage the life of a dying parent. What to really expect when the expectation of death is pending, and yet life is still going on. Life goes on. It has to.
There is not one outline that details the amount of paper work, upon paperwork, insurance, living wills, DNR’s, CNA’s who steal, ( we went through two) assisted living verses staying at home. There are no chapters on how to deal with siblings, those of your parents and your own. What happens to family, your parents and your own? The sheer exhaustion of carrying out wishes and wants, the just and right way, while knowing there is only so much one person can do. You are daughter, sister,guardian, gatekeeper, wife, mother, teller of truths, keeper of stories, navigator, housekeeper, medicine tray filler( what if I mess up for gosh sake?) Peacekeeper, ruffler of feathers, barer of good news, barer of bad news-the one who cries in the dark when everyone else is sleeping.
Looking back now, I know why she chose me to guard her precious moments of living until it was time. My mom knew I could do it way back when she was making decisions about how her living while dying was going to go. And what if I could not? You know, above all things, you know this is the way it is supposed to be. So you keep going. You except the things that are pure ugly about watching a parent live while dying. Pride plays a huge part, your mom’s not your own. You channel grief- ongoing, embarrassment,you navigate a shift in who cares for whom.You become to the mom to the mom. You miss her, and she is right there. You want your mom back so your daughter can know all the things about your mother that got you to this point in life.
The phone rings and another hour is spent finding a solution, talking to a brother, dealing with someone’s guilt about what should of, could of, and then, in the other hours, you deal with your own family and all the things that fall into that category of life; done justly and right and according to what we have discovered and mapped out as our own rules for living this life. Wife, mother, daughter. The roles change.
Her existence these days is limited. She travels from the bed to the sofa, that overlooks her blessed blue Atlantic, that on a clear day match the color of her eyes, and then at the end of the day, the blinds are drawn and she travels back to the bed. Nurses have become her daily companions, with the exception of visits from long time friends. She gets outside only on occasion, when the humidity and salt air are not too much competition for her frail lungs, fighting for every bit of oxygen she can tolerate. Each breath, produced by a heave ho from her chest, filling up as much as she can hold, until the next nicotine break.
On one of these recent porch excursions, the wind was just right, the sun was strong, the water calm and blue, reflecting a million diamonds in the low tide of the day. We sat outside as my daughter played in the sand just as the bottom of the steps, turning around every now and then with a wave, running back and forth as the water ebbed and flowed. My mom, watching her granddaughter, me watching her. At one point my mom closed her eyes, lifted her head up to the sun and let in that moment of what she remembered most. Her beach, the salty air, her own strength, from the sun or otherwise, and it was all I could do not to cry as I watched her take in that moment, me knowing she knows those moments are few for her. And there in that high noon, or whatever time it was, not that it mattered really, were all the reasons why it mattered most.
During my visits with my mother, I got to change the course of time, unravel the mysteries of what it is we do as mother and daughter. I learned more about my mother while she was dying than I would have had we gone on, say an adventure. You know, charted a course to explore something, somewhere else. No, we had our travel agenda, of quite a different kind. I don’t agree with everything she has done-and I can sure bet she has questions about some of my choices along the way, but somehow, we got there, on common ground to see it all through. Nothing against my brothers, but this journey was of the mother daughter kind.