If you haven't already, read Christine Geery's piece on Caregiver Burnout.
Yesterday, I had a spontaneous lunch with a good friend. I have been working on summer schedule, which means a lot of half days. When I return from my vacation I am taking soon, it will be mid September and half days will turn back into full days, and I will have to revv up for a while. My summer "break" can be seen in a number of ways. I choose not to fret about unearned money, from loss of hours, and view it as rest and renew time. I have been investing some of my dollars into rolfing, a very specific kind of body work for structural realignment. I have been exercising more, taking some dance and fitness classes, knitting a sweater that will accompany me on my trip. I have been reading more, and letting a little more space in between the thoughts. Yesterday, my rolfer had to cancel, as his 6 year old was ill and he needed to stay home with her. This gave me the chance to call my friend to see if she was free, and she was.
We are both childless, but have pretty good communities. If anything, both of us are most often the caregiver in the relationships we have. We provide the ancillary support to friends and family who do have children, and are the people who have the childfree time to give a hand to those who need a hand. And, professionally, we provide education and care. When people ask about the childfree status, there is often a charge of being selfish or otherwise, I wrote about it recently here. Then there is the idea that when you don't have children, you won't have anyone to care for you in your old age. But, this is neither fair nor true for many people who do have children.
This friend and I were discussing the possibility of moving, and how we establish our communities of care. We aren't that old yet, about 40 on either side, and pretty vibrant and active as we can be. Both of us have had to face disability in life, and work daily to get ourselves out of disability's way to the best we can. We may have friends and family who can help a little, but mostly we do what we can to not have to ask for that kind of help when we don't have to. Mostly, because we know it isn't really there, and because we want to save it for when we really, really need it.
My sister is thinking of moving here, part time. She does not like Arizona, but she cannot afford to stay in California, and she cannot handle living in Vermont in the winter. Her heart is in at least 3 places, and our mother lives in Denmark. My sister, also childless, also faces lifelong constraints of ability and disability. She has been permanently, partially disabled due to a neck/back surgery from when she was a teenager. She is also a cancer survivor from her 20s. Many surgeries and lots of pain. She is also a caregiver, having spent all of her life babysitting, doing doula work, helping out, offering a hand. She has had to rely on many friends for a lot of help when she was helpless. And she has given ten times back in love and kindness, child care, gifts, dinners, rides, friendship. She is thinking she can buy a house with me, and have it there for her part time. It will allow her to go where she needs to be (Vermont, for her charity foundation), where she wants to be (California, helping my brother's family with the day to day of small child care) and Denmark (where she and my mom can bliss out in their own special land). She is my sister, and until one of us dies, she will always be on my list of dependents, and likewise. Whether or not I marry, this is not negotiable.
The way of the future is already here. More and more people live alone, or become single and remain single through out their late adult life. More and more people eschew marriage and children. Many women find themselves with a child and still alone in support, as they lack parents in the physical, emotional or material sense. Statistically, mothers under 30 years of age are unmarried and dependent on their own parents, financially. Whether you agree with it or not is irrelevent, it is how our society is. Women are divorcing their husbands instead of just outliving them, and consigned to living alone until they die. The children they have had are not likely to live near them, or be helpful to them if they do. They don't give the emotional and material help that any of us, man or woman, parent or childless, need. Everyone is expected to be self sufficient, but that is impossible.
Every time I need to do laundry, I must wait for my sweetheart, because I cannot lift the basket. The last time I tried to do it, I needed to rest out my sprained back for two days. My laundry piles up easily. Still, it is no longer something I can do on my own without a lot of pain, struggle and risk. I also cannot lift the box of cat litter. Without having my sweetie here, I would have to move to a one floor apartment, with a built in laundry, and reconsider having a cat companion. I can do almost all the rest of things, though mopping cannot be undertaken lightly. I am as fit and active as I can be, but that is not enough for self sufficiency. And I don't have to be on pain meds, psych meds or other meds.
I have longed to move away from Arizona since I moved here over ten years ago. I realize now it becomes decreasingly likely. My sweetie's two children are young, and neither self sufficient in any way. It's increasingly clear that will happen closer to 25 than 20, if at all. My aunt and uncle live nearby, and we give each other the support they don't get from their own children and I don't get from my parents. My sweetie's family lives far away and has never given him financial or material support at any time. I wish his brother could live closer, but it won't happen. He has been taken in by my family. My sister is looking for a house that can hold us, his kids when needed, our animals, and her animals, and some space. If I get enough yardage, I can have room to put up a yurt or two should another one of my friends need a place to live. I am happy to make chicken soup, and come knocking, when I have the time. Yesterday, I had the time. This goes beyond friendship, these are the people to whom I am pledging my mutual caregivership.
The reality is that far less than half of our population can look towards a loving and supportive spouse, a financially and emotionally stable family, and responsible and independent adult children. Every week, I hear from my patients in their 50s and 60s, whose adult children have continued to live off of them, who have abused drugs and alcohol and dumped their children onto the grandparents, who have caused despair to many, who have been abused by partners, and who do not now nor likely will ever provide any semblance of care to their parents. Their circle of life is broken.
These women may or may not be married, they may or may not be financially able to leave an abusive or emotionally dead marriage, they may or may not have a single person in the world who will show up and help them out. Many of them quiver in exhaustion, challenging the very notions of what love and family should look like. For many of them, they will be sucked dry until they are dead. They know that when the time comes, they will be put in a home and left to compost. Until then, they are fighting for the last shreds of health and wellbeing they can muster to take care of what they have to take care of every day. Disabled husband, emotionally disturbed daughter, orphaned grandchild, elderly neighbor with children who don't have time to help. They still have jobs, because they can't afford not to work outside the home. They have no savings because they spent it raising their children's children and bailing people out left and right. There is no respite or comfort in their old age.
I will not have children to watch over me when I am old. I will have relationships with the children of my friends, some of whom I have helped out with along the way. I will not have aging parents to take care of, as my father already died and my mother lives in nursing care half way around the world. I may or may not be partnered, only time will tell. My caregiver circle is for me and my sister, my aunt and uncle, several of my unmarried and childfree friends, and my sweetie and his family. Over these years, I am working on establishing the kinds of friendships that will continue to acknowledge and honor these relationships. I worry some for my friends with children, as they have no way of knowing if they will ever grow up to be self sufficient, kind or generous. I worry for some of them who are already overly dependent on their own parents for help, because those parents are getting old. And I hope, that when the time comes for me, my sister and I can just walk out into the ocean and let it all float away.
Open call: who is your caregiver community? How have you made the connections you will need to support you when you cannot support yourself? How has your life been changed by disability or caring for someone who is disabled? If you have children, or a supportive spouse, do you have other friends in your "family" circle?