Last week I went to a book signing by Rt. Rev. Gene Robinson, for his new book, In the Eye of the Storm: Swept to the Center by God, and in his remarks, he noted how supported he has been in the U.S. Episcopal House of Bishops by the women bishops and by those bishops who are people of color. The success of that support has been because they are recognizing oppression as a common cause, not as a comparative exercise. That is, the women aren't saying, well, sexism is worse than homophobia, and the blacks aren't saying, racism is worse than either of those, but together they are saying we are all beloved children of God and deserving of love, respect, and equality. In coming together they can work against systems of oppression, rather than being divided and fighting against one another about whose pain and troubles are worse. He writes that one of the reasons he suspects that there is so much focus on homosexuality in the church is that it's a way to avoid talking about sex, sexism, misogyny, and heterosexism. More on this when I've finished reading Gene's book. I started his book this morning and it's pastoral, engaging and folksy, much like Gene himself, a Kentucky native who has been a priest in New Hampshire for over thirty years.
A few weeks ago, my college alumnae quarterly sent out a note that they were going to have an article on aging and elder care issues. Since I work for an aging services agency and have an aging parent, I responded that I might be able to contribute to such an article. So, this past week I spent some time at work responding to questions about my own experience as a caregiver and family conversations about aging, and giving a broad overview of trends in elder care. As a long distance caregiver for my mother, who has been relatively healthy, my experience of confronting aging and disability and being a hands-on caregiver has not been so hard. But like varieties of oppression, experiences of caregiving and experiences of disease have some things in common. I'd like to share my responses here to some of the questions posed by the person who will be writing the article as preparation for another blog posting that I have been trying to write on the impact of diseases of all sorts on the relationship of caregiver/friend/colleague with the person who has a disease or chronic illness.
1. Did you talk to your parents or spouse about what their wishes were for their care in their later years? If you didn't, do you wish you had? And what would you talk about? How do you recommend bringing it up? Would conversations like this make a difference in your decisions about care for your parents/spouse?
When my father died at 63, twenty-five years ago, as a family we were really unprepared for that experience. It was unexpected and he had made no plans or legal or financial arrangements. Despite having a history of heart disease, he thought he'd just keep working and that everything would continue on like it always had. The reality for my mother was quite different--within two years, she'd lost her life partner, she lost her home, and she had no income except social security. I wanted to think that now we are more prepared to talk about issues of aging and death, but about five years ago, I tried to get my two brothers and my mother to have a conversation all together about what my mother's wishes were: did she want heroic measures, for example, to be put on a ventilator or life support if something happened or did she want a "do not resuscitate" order? Where did she want to live if she could no longer live alone? What things did she want her funeral to include? Who should make decisions for her if she couldn't? Who gets what? Despite making that attempt for the week while I was visiting, my older brother avoided the conversation every time I brought it up. Finally, my mother, younger brother and I had the conversation one evening before dinner. I gave my mother the Five Wishes form to complete, which I would strongly recommend to everyone facing aging (that would be all of us). It gives a way to guide the conversation. As far as a way in, there is always something: someone dies, someone is sick, or you read something in the paper. You just need to start and have the conversation.
I suspect that this summer it will be time to check in again on all of these issues, and some new ones, when I visit. My mother has macular degeneration and says that she can see well enough to drive only when the sun is really bright--she lives out in the country and can't get to the store or to the doctor without driving. She has some significant hearing loss and can't afford hearing aids. These are different issues than the ones we talked about before. How do we help her deal now? When do we take away the car keys?
Often it is not just the big things, it's the little things. My mom lives close to my brothers and two thousand miles away from me, but sometimes I think that she tells me things that she doesn't tell my brothers--maybe it is the mother/daughter thing. She had a hip replacement several years ago, and can't reach her toes to trim her toenails, so she either has it done when she goes to the doctor to get her corns and bunions treated, or she waits for my annual visit. Last summer we had a wonderful conversation about foot washing as an inspirational rite of service while I trimmed her half inch long toenails and washed between her toes, but I also found the local pedicure shop and have bought her gift certificates for pedicures, which she absolutely loves. My older brother sees her almost every day, but she would never ask him to trim her toenails.
Of course, that also makes me wonder what she's not telling me...
2. What has been the best source of support for you during this experience?
I have friends whose parents are aging, and we talk. Because I work in the field of aging, I am fortunate to have a wealth of information in my colleagues. I think my work provides the opportunity for my friends and for people at my church, for example, to start conversations about aging, and while I'm providing information, I'm also getting support. It's important to talk about the demands placed on you as a caregiver, and the role reversal that starts to happen when you have to take care of things for your parents, or aunts and uncles or older friends, while still understanding that your parents are adults who deserve respect and the right to make their own, good or bad, decisions.
It's astonishing the number of people I know whose parents have Alzheimers, for example, and while we have a program at our agency that consults with people on what to expect, I think it's really important for family who are dealing with a disease and situation like that to talk to other people about how to deal with the day to day things, not the medical things necessarily. Aging sneaks up on us all, and many of us are thrown into crisis mode by some acute episode and don't know where to turn, but the truth of the matter is that there are thousands of our friends, neighbors and colleagues who are also dealing with it, if we just start the conversation, and lots of resources available.
3. What has been most surprising to you about this experience, something for which you wish you had been prepared, or from which you learned something important?
Perhaps it is the little things like trimming toenails that I didn't even think about, and I think that my mother just accepted as one of the costs of getting older, and didn't complain about it. I don't know whether baby boomers will complain more or not, but I think we don't have to accept these little things as a necessary part of aging, but it also takes a fair amount of energy and research, and sometimes money, to find the ways to work around and through some of the "little" things that happen. Those were things I wasn't prepared for.
The other piece is the tremendous emotional cost of the losses I see my mother having: not only the loss of sight, hearing, and mobility, but the losses of lifelong friends who are her support network, the loss of identity as the go-to person, as the care provider herself, the social isolation as she can't get out as much on her own schedule, the loss of hobbies and pastimes because she can't see as well, bend as much, hear as clearly: reading, gardening, going to church become less enjoyable.
One of my friends who has a memory disorder (undiagnosed as to cause or type) has been grieving the loss of his identity as a smart person because he just can't remember things now. He was not yet 60 when it started, and he now can't have a job because he can't remember many things in the short term. For his wife, the first couple of years were very hard as it crept up on them. Imagine living with someone who can't remember what you just said five minutes ago or whether they ate breakfast or whether they read the paper--it changes your entire relationship, and when it's a gradual change it takes time to come to terms with it for both of you.
My boss says it takes courage to grow old and to survive the losses. I took a class on death and dying for my M.Div. program, and one of the things I learned from that was that people who do better as they get older have learned to grieve better--they feel it, deal with it and accept it. My mother is actually a big support for me as I face her aging because, for the most part, she has a real acceptance of death and aging as a part of the natural cycle--that comes from living on a farm and near nature all of her life, and she has her faith which is that something better awaits her after death.
4. What do future caregivers need to know or think about before the elder care stage of life begins for them and their parents? What makes sense to work toward? What might have to be let go?
Caregiving is hard. We find that among elders it is often the caregiving partner in a couple that dies first because they are not taking care of themselves and getting help and relief from non-stop caregiving. Ask for help. There are agencies that provide services, but you don't even necessarily have to go to an agency. It might not be a big deal for your parent's neighbor to mow their lawn when mowing hers, or for a friend to get groceries when she goes to the grocery store. But people can't help if you don't ask. People don't know what's going on unless you communicate.
The average age of our clients is 85, so people are staying healthy longer. That's the good news. The bad news is that what often triggers a pretty rapid decline is one acute, and unexpected, episode and as a child who comes back onto the scene you have no idea what medications your parent is taking, who are their doctors or other professionals, where they are banking, where are assets, or who are their friends who need to know things.
So part of handling aging well is perhaps applicable to handling growing up well and handling being in the middle well: organize your stuff so that you and others can make sense of it, and communicate to your family and friends about the people and things that are important to you. Make lists of medications, passwords, account numbers, addresses, and professional service providers. Keep the list in a safe place, but let at least a couple of people know where the list is. Have a local emergency contact and check in buddy who has a house key: neighbor, pastor, or friend, and make sure your child knows who that person is. Have a check in plan: someone that commits to making a daily email or phone call, especially for a person who lives alone.
Aging does not mean that you have to give up. You don't have to let go of anything that's important to you. You might have to change the way you have done it. But one of the things that we want to do is to transform community understanding of what it means to be getting older. I have someone working for me now who is 82, and she isn't interested in retiring. She finds her work meaningful and her colleagues supportive. I have another colleague who is almost 65 and chomping at the bit to retire in two weeks because she wants to travel and do other things while she still has her health. Choices that people make as they age are as varied as people are. Some people will give it all up and sit in front of the TV, and others want to continue to work, live, learn, love, laugh, and cry.