When I read Patty's introduction of her guest hosts, in a twist of thought I cannot explain I was reminded of something one of my sisters mentioned during her last visit a couple of months ago: That her husband wanted to see Mom "before she dies". I reacted briefly to this, as noted here, writing that I understood but had never experienced this One Last Look phenomenon and could not recall that it was a hallmark of my own born-into-family. We lived mostly out of country. Although my parents saw to it that we visited relatives every three years or so and I'm glad they did, as I would have known nothing of them otherwise, as our Ancient relatives ailed and died our family made no attempts to view The Passing Ones.
As I thought with more depth about this common desire to engineer one last visit with an Ancient One with whom one has lost touch (and, it has to be said, probably won't be able to reestablish touch during that last visit), I realized that when I wrote of my understanding I was doing so out of turn. My attitude is, if you haven't kept up with someone throughout their life, what's the use of rushing to view them on their death bed? No glimmer of understanding in that attitude. Time, I decided to think about why my relatives have come to this. What's keeping them away now, I wondered, while Mom's still alive and kicking?
I began with the present and worked backward. Over the last few years I've become exasperated with the implicit dictate that when family visits we are to adjust to them, their requirements, and their beliefs about the various toxicities with which Mom's and my life together might infect them, while continuing to maintain those qualities with which family members are familiar, in which they take pleasure and which assure they will feel as though they've maintained a meaningful connection with Mom. Funny, though, before the edict to adapt, adapt, adapt wore me (and sometimes Mom) down to the point of not wanting to do this anymore for relatives who were refusing to adapt to us, from the time I decided it was not only necessary but desirable for me to be Mom's full time, full service, always-there companion and caregiver, there has appeared among my relatives an obliquely expressed tension implicit in such observations and questions as:
- The infamous, "Take Care of yourself";
- The sympathetic, "Don't you miss your past life?"
- The meant-to-be-supportively-provocative, "What will you do when Mom dies?"
- "If the caregiving sibling doesn't consider her life inviolate, am I wrong in thinking my life is?", and
- "Maybe, when one gets to be old, one no longer sees the sense in avoiding burdening their children with their elder care...omigod, what if I start feeling like that? Isn't that selfish? Doesn't that mean that I will become one of those parents who will plague, rather than bless, my children's lives?"
Trying to identify the root of the tension, I realized that in doing what I'm doing with our mother and insisting on doing it in the most involved and meticulous of ways, far from doing my relatives a favor so that they wouldn't have to worry about Mom, I've betrayed them.
When my maternal grandmother began to dement, her daughters and their families were united in picking up the slack, first by sharing shifts of companionship and maintenance while Grandma remained home in Prescott; then in Scottsdale, where Grandma was moved so the shift taking would be easier; then in my aunt's home, where Grandma was moved when it became obvious that she needed continual watching, mostly by professionals, since everyone else was employed in the world of commerce; finally, in the last half year of her life, in a nursing home when the care she needed was beyond their financial and emotional capacity. During all stages, the family was united. During all stages they agreed that changing Grandma's life so they could continue with their own lives and still have Grandma close was not only the right but the smart thing to do.
That's not what happened in our family. One of us, me, stepped out of line. One of us said, "Okay, I'll change my life to incorporate my mother's. I'll focus on her life as consciously and meticulously as I focus on my own. If changes need to be made, my first priority will be to see what changes I can make in my life to accommodate the changes in hers. Further, instead of thinking of it as a sacrifice and a duty, I'll consider it an adventure, a learning experience, a chance to get to know her as I've never known her, an opportunity to expand my skills, perceptions, mind and heart."
When I did this, despite all my and my sisters' attempts to make my choice appear to be beneficial to all, what I actually did was unwittingly declare that we were no longer united.
This, I think, is most likely the primary reason why, when one member of an extended family assents to give full time, intense companionship and care to one or more of a family's Ancient Ones, families fall apart. There are other reasons, especially when everyone's trying to provide, everyone's trying to split the "burden", everyone's trying to negotiate the difficulty of maintaining some kind of dignified, stable surround for the Ancient One. When one family member disagrees with society, though, and decides to recognize Ancient needs that most of us won't acknowledge because we're afraid our own needs will get lost in the shuffle and we'll lose what lives we think we have and, anyway, it seems "right" that the Ancient should lose what appear to be their dwindling lives to what appear to be the thriving lives of those younger, that disagreement becomes betrayal.
I've witnessed the opposite twice in my mother's family and once in my father's family. When a family decides it's best "for everyone" to put an Ancient One in a nursing home, assisted living facility or surrender her care and companionship to the professionals, the siblings unite in a sense of shared relief, loss, grief and shame: Relief because everyone believes their lives have been spared, well, something horrible, surely; loss because everyone knows (though rarely does anyone acknowledge) that they have set the Ancient One on a journey which will render her a stranger to everyone; grief because, well, that's the way of life, isn't it; shame because of the discomfort of having to negotiate the conflicting messages from our society that we're supposed to be able to handle everything, do it all, despite the odds, except, message two, care for our Ancient Ones, the professionals should be doing that, so, here we all are, not completely sure whether what we've done is "right" or "wrong".
The relief, loss, grief and shame aren't nearly as important, though, as the unity. No one feels as though anyone has endured more or less than their share of the circumstantial and psychological "burdens" of answering the question, "What should we do about Grandma?" There is no subterranean questioning and reworking of family values. No one is standing out in the crowd. Rule by Mob is Rule by Right. We all agree. We're all safe because We're Not the Only Ones.
The person who decides that the societally prescribed treatment of Ancient Ones isn't a treatment with which she can live is the renegade. What she decides and what she does calls into question her relatives' values, society's values. Suddenly, everyone who knows her, relative or not, finds themselves harassed to question their own values, their hearts, their society, their lives. Considering these questions is an enormously uncomfortable task; so uncomfortable that we spend a great deal of our lives trying, often successfully, to avoid them or defending ourselves against them instead of doing the hard work that is involved when we face them down. Thus, the person who decides to break away and face those questions every day in the acute presence of the Ancient One becomes a reminder of all that the rest of us find ourselves unable to face. That's reason enough for dissension in the family ranks, dissension so potent that it is frightening to confront and easy to avoid.
What are the details of the betrayal of the full time family caregiver? She has betrayed her family by listening more closely to the Ancient One; allowing for the Ancient One's changes in perception and decision; embracing the inconvenient, risk and compassion more thoroughly than anyone else in her family. Later, when she's hit her stride, she betrays her family by insisting, more through action than words, that the companionship she's offering, the care she's giving, isn't a career, it's life, and life, to her, is more important than career. She heightens the betrayal when it becomes obvious that she considers that in taking care of the Ancient One she is taking care of herself. The acme of her betrayal comes when she declares, either through action or words, "We've done more than enough adapting to you. Time for you to adapt to us. Refamiliarize yourselves with us. Help us. If you can't, at least stop thanking me. I'm not doing this for you, I'm doing it for our Ancient One and for me. Stop sentimentalizing me as a sacrificial saint."
One way to avoid the dissension is to avoid the situation, which means avoiding the caregiving family member and the Ancient One. This is where the isolation of the caregiver begins. The other avoidance technique is to blame the dis-eases (see Sam Keen's "To A Dancing God" for an explanation of "dis-ease") of Old Age rather than the fears of the family. News Flash: Dementia of any sort doesn't create family dissension. Neither does physical frailty. People create family dissension.
This is a revelation to me. Since I became my mother's final companion, I spent years trying to make it so easy for my sisters to keep up with my mother and me that I almost broke my figurative back. I believed it was all on me. I'm the one who's rebelling, I'm the one who should come up with the solution. Turns out, when family and society are involved, adequate solutions can't be discovered by one person.
It's time for us to pillage and plunder The Land of The Soon to Be Dead out of existence. It's time for us to consider that if one is alive, even if it's a good bet that The One will die tomorrow, she's alive today, changing and, yes, growing. It's time to remember that while we may cure many of the physical conditions now implicit in Old Age, Old Age will always be with us and will remain, in some measure (although it could be less so) mysterious to Us Who Are Not Yet Old. It's time to stop holding an octogenarian or nonagenarian to perceptions and decisions she made in mid-life, such as declaring that she doesn't want to be a "burden" to her children and buying a long term care policy (both of which my mother did and both of which she later repudiated), decisions she made out of the same fear of Old Age to which we are victim but which she has, since, conquered by the inevitable act of becoming old. We don't hold 45 year olds to the decisions and perceptions of their nine year old selves, or their 15, 25 and 35 year old selves. What makes us think that we have the right to do this to The Old? It's time to realize that we consider our full time, in-home family caregivers and companions to Ancient Ones betrayers of an implicit and insidious family trust, a trust that will, eventually, deny us our family and our membership in society if we don't begin questioning it, now.
There are still discoveries to be made about our Ancient Ones as people, as individuals. Relationships with our Ancient Ones remain loose enough to change and develop, even in the grips of dementia. Wanting to be familiar with Our Ancient Ones is the reason we should want contact with them, primarily on their terms, even if those terms have changed since they were in mid-life, as this is the most generous and enlightening way to know anyone. While it is true that a primary parental responsibility is to civilize children, The Old have already been civilized. When we decide that Old Age is a process of devolution and the rest of us must grab The Old One and forcibly maneuver her backward so that we can stand to be around her or easily abandon her to The Land of the Soon to Be Dead, we do her, and ourselves, a great indignity and we marginalize those of us who feel compelled to remain side by side with our Ancient Ones. It does us no good to simply want to view Our Ancient Ones before they die. We need to remain in close, adaptive contact for the health of our Ancient Ones; for the health of our caregivers; for the health of our families; for the health of our society; for our own health. We need to be doing this together, enfolding, rather than fearing, the choices of the family caregiver, the one who's chosen to directly embrace The Ancient One, or we'll all be traveling Ancienthood isolated from our families, our friends and our society. Oops! That's what we're doing now, isn't it?!? Better get cracking, people.
I am a full time, companion and intense needs caregiver for my Ancient One mother. I assented to do this, in response to her request, after six months of consideration, in December of 1993. Since 1999 I've kept a group of journals detailing our adventure together, the main one housed at The Mom & Me Journals dot Net. Please feel free to contact me, if you wish, at email@example.com. To avoid your message being deleted as spam, please insert the following into your subject line: "The Unforgettable Fund".