BEING A CAREGIVER

I am reposting this blog, which I wrote in 2012, because of the importance of the topic. I think my conclusion about reaching out for help is essential.

How did this happen to me? I never planned to take care of anyone else. After years of working in editorial offices, I earned a PhD from Stanford and set up my own business. The Stone Cottage was a writing and editing service for educational publishers; I specialized in biology, but worked on nearly any program for science education. My chemical engineer husband was self-sufficient, and we had no children. We seemed to be doing everything right.

In the mid-eighties my husband, who already had type 2 diabetes, had a heart attack. I stopped working for a few weeks to help him recover. Around the same time, my widowed mother decided to move from Florida to California to be near us. Again, I stopped working for a while to drive her and some of her belongings across the country and get her settled in a house she bought. Eventually, our lives settled down and I returned to my writing and editing.

 

As it turned out, my husband’s health worsened greatly over the years. Though he was well for long periods, every year or so he would have a medical crisis and enter the hospital for a while. By the time he died in 2003, he had had a sextuple bypass and several other cardiac surgeries, a cervical laminectomy, and amputations of a leg and some toes; and was on dialysis. His medical bills came to more than a million dollars, so even though he was well insured, we had to use our retirement savings to pay our portion. I cut down greatly on working to care for him, adding to our financial difficulties.

 

During the same period, my mother became unable to live alone, so we bought a larger home with an in-law apartment where she could live. I was the only caregiver for both her and my husband, doing the cooking, laundry, and other household chores.

 

After my husband died, my attention focused on my mother, who was in her nineties. More and more, she needed my help with bathing and other routine daily activities. In 2005 she entered an assisted living facility, and though I visited her almost daily, my life became much easier. When she died at the age of 101, my role as a caregiver ended.

 

My slide into caregiving was gradual, as it is for many caregivers. At first it was a matter of taking my mother shopping, occasionally rushing my husband to the hospital, and generally being available when they needed my help. Over the years, though, caregiving took over my life. I had little time for building a network of women friends or pursuing my individual interests.

 

Of course, in a sense I was lucky. Having a home office, I could combine working and caregiving when the projects were small enough and the deadlines were reasonable. (Any freelance editor will find that amusing.) If I could do it again, perhaps I would hire more help, so I could stay active professionally. As it was, I lost touch with what was happening both in science and in publishing, and failed to learn the new techniques that are needed for editors today. Though I have continued to write, I have done so only sporadically. Geriatrics  will probably be my last full-length book.

 

Would I do it again, given the cost to my own life? Yes! Though professional caregivers can be excellent, only a family member can provide the ill or aging with all the loving help and shared memories they need. Caring for my husband and mother gave me a sense of fulfillment I have never felt otherwise; during those years I became much closer to them, and found myself becoming less self-centered. We all benefited from our situation.

 

However, I would reach out more for help. Like many caregivers, I was naïve about the financial aid that is available. I might have been paid at least a small amount for my time, as my staying home made it possible for my husband to remain out of a nursing home. We probably could have received Medi-Cal benefits, but assumed that because we had a nice home and car, we would be turned down. Instead, we struggled to stay afloat. A social worker asked me once whether we needed financial help; why was I too proud to say yes? Caregivers’ support groups were available, and I should have made time to join one. The Unitarian women’s circle I found after my husband’s death was a wonderful source of friendship and support, but I could have found it years earlier. If it takes a village to raise a child, it also takes one to care for those near the end of life and for their caregivers.

 

MOTORHOMES IN THE FUTURE

For the past couple of years, we have had terrifying wildfires in northern California. Thousands of people either lost their homes in the fires or were evacuated to safe areas temporarily. Fairgrounds, casinos, church parking lots, and other places were converted overnight into campground-like shelters. Many of them advertised free electrical and water hookups.

Many of the evacuees arrived in their RVs. Bad as it was for them to leave their homes, they must have found the familiar RV surroundings very comforting. Staying where they had a few clothes, a galley, and even an entertainment system must  have made an enormous difference to them.

In a time of terrorism, we cannot predict what the future will hold, or what may happen in our immediate environments. Having an RV might mean escaping from great danger.

RVs can be useful in other non-recreational ways. Young people are usually quite mobile, and may move far from home for jobs or school.  Searching for a decent and affordable apartment can be a nightmare, wasting time and money that might be better spent in other ways, but someone with an RV doesn’t have to go through it.  Cities or college towns with large unused  spaces  (such as torn down shopping malls) might even benefit from creating pleasant  motorhome parks where people could easily  move for a short time. Once there, they might decide to stay and become part of the permanent community.

The tiny-home trend shows how little many people value large, expensive homes.  During the dot-com boom, especially, McMansions were very popular; now, except for the filthy rich one percent of the population, people have turned away from them. For a reasonable cost, anyone can buy a cute, tiny home with all the basic necessities.  Even tiny homes, though, are usually difficult or impossible to move if that becomes necessary. An RV can provide the same amenities plus the enormous advantage of being a vehicle.

The many drawbacks of RV life are undeniable:  most motorhomes are less comfortable than even a small home,  there are no permanent hookups for water or electricity, and they  depreciate in value rather quickly. Anyone considering living in one for more than a few months would do well to think about the disadvantages carefully before making a commitment. Though I am very attached to our 24’ Winnebago View, if I were going to live in a motorhome for a long period, I would want a large vehicle with a queen-sized bed and closet space.

For many of us, the American dream still includes owning a brick-and-mortar home, but it does not have to be an extraordinarily expensive one that makes travel impossible. We might consider having it all: Perhaps  a modest home plus a motorhome is the home of the future.

 

 

 

 

 

 

A VEGETARIAN THANKSGIVING

Though I am not a very good cook, many years ago I learned to roast a turkey and provide a Thanksgiving feast with all the fixin’s.  In spite of the work, it gave me a lot of pleasure.

My partner, rather unfortunately for our social life, is a vegetarian. Most of the time I am happy to be a herbivore (with occasional sneaky forays to a burger joint), but it does lead to some problems around the holidays. If we join others for dinner, someone is likely to beg him to “try just a little turkey,” or to lecture him about protein, rather than allowing him to eat the side dishes in peace.  Usually we manage to travel somewhere far away from friends and family at Thanksgiving and Christmas.  We feast on squash, mashed potatoes, pumpkin pie, and other traditional foods, skipping the turkey.

One year, though, we wanted to take our chances on the family Thanksgiving gathering, just so we could visit with them. We packed up the Winnebago View and started out for southern California.

The sky was cloudy, and the weather forecast was for possible showers. As we drove, clouds gathered above us, thunder rolled, and lightning flashed. Within an hour or so, rain began pouring down. When we could no longer see the freeway, we decided to pull off and sit out the storm. Luckily, just then we saw a sign pointing toward a county park. I have forgotten what the park itself looked like; it was probably just a large, grassy area with some picnic tables and restrooms. More importantly, it was a safe place to stay comfortably for a while.

The rain went on and on, until we realized there was no way we could reach  southern California that day. Calling our hostess, we explained our situation and said we were not coming after all.

Being RV owners, we had of course brought plenty of food with us, so we sat at the dinette table eating a simple meal and listening to music as the rain lessened. Then we looked out the window and saw a huge flock of wild turkeys running across the grass toward us. Some were displaying their plumage in peacock fashion, others were having beak-to-beak encounters that reminded us of teenaged humans. They were having a wonderful time, enjoying their freedom rather than gracing someone’s Thanksgiving table.

It was the best Thanksgiving a vegetarian could want.

THE FOGGY, FOGGY COAST

Coastal fog from the Pacific Ocean can be romantic and mysterious. Many times I have walked the streets of San Francisco at night, when fog was rolling in from the ocean, and foghorns were sounding. It was thrilling, like a scene in a Dashiell Hammett mystery. The romance wears off eventually, though, with overexposure.

Recently we visited Patrick’s Point, a scenic spot on the coast south of California’s Crescent City. The campground was overpriced ($35 for dry camping), like campgrounds in all California state parks.  I was disappointed with the park until we went out to gaze at the Pacific from Wedding Rock, a high rock with an easy trail winding up to the top.

Waves crashed against the rocks below and sent spray high into the air. The views up and down the coast were magnificent, justifying the high cost of our camp site. (A couple of girls tried to persuade us that they had reserved our site on the Internet. Knowing the sites were first come, first served, we threw them out. Later we noticed their tents in a site where some young men were camped, and heard laughter, so apparently we didn’t do them a disservice.)

The brochure describing Patrick’s Point mentioned that most of the year the area is “shrouded in fog;” as we were there in October, when the days are sunny and clear, we saw it at its best.  It must be a sad sight during the summer tourist season, when it would be both crowded and foggy.

The Pacific coast in general is a foggy place. My late husband and I lived in Daly City, just south of San Francisco, for four years when I was in grad school, and became all too familiar with fog. In spite of Malvina Reynolds’s snide song about “ticky-tacky little boxes,” Daly City was in many ways a pleasant place to live, but the fog made it almost unbearable. Mildew constantly grew on the shower curtain and any other place it could thrive. We could see only a few blocks down the street.  In winter the fog was cold; in summer it was sometimes hot and muggy, but usually cold and muggy. Worst of all, the fog was depressing, like that in the song “Foggy, Foggy Dew” that Burl Ives used to sing. If I had had to live there much longer, I’d have gone around the bend.

HOMECOMING

Many years ago the Pulitzer Prize winning poet Phyllis McGinley wrote Sixpence in her Shoe (1964), celebrating the joys of home and family life. The book would have been received warmly in the fifties, but at the time it was published the women’s liberation movement was underway. Women readers and reviewers were more receptive to Betty Friedan’s The Feminine Mystique and Helen Gurley Brown’s Sex and the Single Girl than to McGinley’s book, and she suffered a great deal of criticism from academics and fellow writers.

Though out of sync with the national  women’s mood at the time, McGinley’s book was a persuasive, well written argument for cultivating traditional values. Young women of today who grew up hearing the complaints of us old feminists would probably find it more appealing than we did.

I especially recall McGinley’s comments about falling in love with a house. That may explain my sudden recent purchase of a home. I had just sold my house in Placerville,  which had never been more than a pied à terre, and planned to be on the road in the RV for a long time.

But then my Realtor called to tell me about an “adorable” little house in Pollock Pines, just a few miles from my companion’s off-grid home,  that had just appeared on the market. I drove past the house and was hooked. She was right—the house is adorable, and is surrounded with enormous pines, redwoods, and dogwoods. Built in 1970, it has the charm of an older home and the conveniences of a recent one. It even has the ideal kitchen—not too small, not too large, and arranged in an efficient U shape—with a greenhouse window where I can grow some herbs and flowers. I made an immediate offer that the owners accepted. In just a week escrow will close, and I can move in.

I am not a good cook, and that is unlikely to change. But, baking some cookies or other simple foods while listening to music will be enjoyable in this kitchen. There is a small, hospitable-looking front porch where I can sit and chat with neighbors. Books (not only those on my Nook, but also books printed on real paper, with underlining and a few coffee stains) will be everywhere.

Finding the right balance between a career and other “outside” interests and family life has never been easy for any woman. Though I am somewhat embittered by my own experiences in the workplace, and am very much a feminist, I also cherish the domestic life.

This is not a rejection of the RV life. I will continue traveling as long as I can! Travel is one of the great joys of life, and probably I will have only a few more years to indulge in it comfortably. But, now I can also look forward to returning to this home, where I can enjoy the satisfactions of domestic life.

FIFTY YEARS OF MEDICARE

In 1961 I left a lowly job in medical research, and went looking for another one.  An ad for “research assistant” posted by the American Medical Association looked promising,  so I answered it.

It turned out to be my first editorial job , and certainly was the strangest.  I had fallen down the rabbit hole into an unreal world.   At weekly staff meetings, one dormouse-like little old man always fell asleep after the first few moments. Another man invariably came up with bizarre suggestions for editorial projects, a bit like the Mad Hatter.  Every Friday we had a farewell party for whichever coworker was making their escape. One of the secretaries, who  looked scarily like Morticia of the Addams family, sneaked around on rubber-soled shoes and seldom spoke to anyone.  Another secretary began making odd statements about conspiracies going on in the organization. For a long time people simply assumed she had uncovered something sinister in the course of her work, but finally one of the M.D.s in the department realized she had a brain tumor.  Altogether it was a weird place.

 From today’s point of view, one of the oddest characteristics of the AMA was their rabid opposition to Medicare. The costs of medicine for the elderly (and everyone else) were becoming unaffordable, but the AMA officials insisted that passing Medicare legislation would doom the country. Actor Ronald Reagan, who in a few years would be the governor of California, made a film for the AMA in which he proclaimed that passage would lead us down the path to socialism (almost equated with Communism at the time). In the Journal of the American Medical Association ( JAMA) and its other journals, AMA officials insisted that it would destroy the high-quality medical care Americans were receiving.  Luckily for all of us, President Lyndon Johnson made it a high priority, and Medicare became a reality in 1965.

Can any sane American now imagine life without Medicare? Even the most right-wing Republican is likely to rely heavily on it after the age of 65. Conservative opposition today has more to do with cutting the budget for it, which  would be bad enough.

My late husband went through numerous hospitalizations and surgeries before dying of heart disease and diabetes. In his last few years his medical bills came to more than a million dollars. Being a Navy employee, he was well insured; but even with the help of Medicare and a good Medigap plan, the financial cost was enormous for us. We used up our retirement savings, and after his death I had to sell our home. But I have survived and continue to live decently, if frugally. Without Medicare I cannot imagine what my life would be today.

LIVING WITH UNCERTAINTY

Most people seem to have settled down by the time they reach their late seventies. They are either happily staying in homes where they have lived for years, or they are reluctantly moving into some sort of assisted living.

Not me. I am selling the Placerville home I bought only a few years ago, and have not yet bought another one. The reasons are mainly financial (this house was meant as an investment, and has no emotional connections for me), but I seem doomed not to remain anywhere more than a decade.

Where would I go if I left the Gold Rush country? Back to the San Francisco Bay area? I loved that area, and miss it in many ways. Living there would mean constantly  hearing about the Big One arriving at any time, though. After living through the Loma Prieta quake in 1989, I don’t care to repeat the experience.  That area  is also extremely expensive. Back to Chicago? Nah! Again, Chicago is a wonderful place, with incomparable museums, but the winter weather is simply dreadful. Having lived in California since 1980, I doubt that I could survive a Chicago winter now.  Back to Michigan, where I was born and still have some friends and relatives?  And where every summer brings the threat of tornadoes?  Leaving California seems like an unlikely option, even with the continuing drought and the danger of wildfires.

Of course, I can always stay with my companion in his off-grid home.  I am there much of the time now, and enjoy the forested surroundings, but need some of the modern conveniences provided by lots of electricity. The older I become, the harder it is to live off the grid. The hard work is starting to overwhelm my companion, also. It may be easy to persuade him to move.

Or, we can continue to travel in the View. For long periods we can tour scenic and cultural areas, with occasional stops at libraries and coffee shops where I can get my Wi-Fi fix.  I do need some sort of permanent address, if only for storage space and for a place to rest up from traveling. (Perhaps one of the RV resorts where I might buy a small home with an RV pad?) For the next few years, at least, traveling as much as possible seems like the best option. Traveling in an RV is never boring or overly certain; each day brings some new adventure.

As the old saying goes, Nothing is certain but death and taxes. I am not immortal, and the IRS has been dunning me for taxes they say I owe. Everything else is up in the air.

ATTICUS FINCH, REVISED EDITION

Harper Lee’s just-released novel Go Set a Watchman continues the story of Jean Louise (“Scout”) Finch and her father, Atticus. In Lee’s Pulitzer Prize winning To Kill a Mockingbird (1960), set in Alabama in the 1930s, Atticus was a heroic lawyer who stood up to the local rednecks by representing a young black man who was falsely accused of rape. (The book’s popularity was soon ensured by the movie, starring beloved actor Gregory Peck as Atticus.) In the new book Jean Louise and the readers see an older, flawed Atticus who joins a local citizens’ council that opposes the NAACP in the fifties, toward the beginning of the civil rights era.

Many readers who have loved To Kill a Mockingbird for half a century, and revered Atticus, have been horrified. (Reviews of the new book have been mixed, but the quality of the writing is another issue.) Online and in print, comments like “Atticus was a racist” have appeared. In the novel, the adult Jean Louise herself reacted violently when she came home from living in New York and realized what her father was doing. Her love and respect for Atticus were severely threatened. It seems likely that Lee’s relationship with her own father, on whom Atticus was presumably based, was endangered also.

Though I never confronted my own father as sharply as Jean Louise did, during the sixties and seventies we had some prickly disagreements about civil rights. Like Atticus, he was an intelligent, fair-minded man who treated all people equally, but his background and education simply doomed him to an intolerant outlook. Born in 1908 and growing up in a conservative, mainly white, area of the Midwest, he never was exposed to other races and religions as a child. Though college-educated, he never accepted the sameness of blacks and whites, or of Jews and Gentiles. I feel sure that if he had not died in the seventies, he would have become much more liberal. (My mother, who was also born in 1908 and died only a few years ago, had become nearly as liberal as I am by the time she died.) This is not just wishful thinking on my part: my father was anti-Semitic also, but when I married a Jew, his attitude changed quickly. Simple exposure can work wonders.

It is easy to judge people who lived in the past by current standards. History textbooks today are more judgmental about George Washington and Thomas Jefferson, for example, than they once were. However, individuals and groups of people are continually changing. In the fifties, many well-intentioned people had attitudes about race, homosexuality, marriage, and other issues that would seem quaint, if not actually evil, today. We need to try to understand them as products of their environment.

There is a genetic aspect, also: Though in some circles it is politically incorrect to state it, it is obvious from sociobiology that we have some inborn prejudices. Cleaving to the group that resembles us must have had adaptive advantages early in human evolution; so, try as we may, it is hard for those of every race not to distrust or even fear other groups. Understanding prejudices must not lead to agreeing with them, of course. It is important to recognize our prejudices and to strive to overcome them rather than denying they exist. As different groups intermingle and intermarry, tolerance seems to be increasing, but complete acceptance will still take a long time. In the meantime, we need to use education and legislation to lessen ignorance and to protect minorities.

 

DEATH WITH DIGNITY

 Brittany_Maynard had everything to live for. Newly married, the beautiful and intelligent young woman should have looked forward to a long, happy life with a husband and children. Instead, she was diagnosed with terminal brain cancer and told that she would die within a year. She began her painful journey toward death, having seizures, severe head and neck pain, and stroke-like symptoms. At some point she decided not to continue in agony, but to die on a date of her choosing, shortly after her husband’s birthday.

Brittany lived in California, where she could not commit suicide legally. Instead of dying peacefully in her home as she wished, she and her husband had to move to Oregon, which allows physician-assisted suicide. (A physician supplied the aid-in-dying medication she would need, but she would have to administer it herself.)  Though she was fortunate in having that choice available, moving away from her parents and friends must have severely upset her already tumultuous life. She spent some of those last few months working with the Compassion & Choices group, which helps the dying and publicizes the difficulties they face in carrying out their decisions. Her video is familiar to most of us now.

The publicity about her death led to a California legislator’s introducing SB 128, a bill that would have made Brittany’s kind of death legal in California. Many of us (a large majority of the Californians polled) are in favor of death with dignity, and thought the bill would pass easily, but it was quickly defeated by religious and other groups who represent themselves as being in favor of life. They trotted out the usual arguments about possible miraculous recoveries, not letting temporary depression cloud a sick person’s judgment, and so on. It was sickening to read their smug remarks.

I do not want to hear any pious comments about waiting until “God called her home,” implying that it was sinful or stupid for her to end her life on her own terms. What kind of people are these who deny a dying woman the right to end her painful life a little early? Has any person who has watched a loved one die slowly and in agony want to condemn anyone else to that kind of death? We need to pass some version of SB 128 to ensure the right of Californians to escape unnecessary suffering from terminal illnesses without having to move to a more compassionate state.

WRITING VS. RV TRAVEL

Writing and RV travel should go together like ham and eggs. When we bought the Winnebago View, I thought we could travel from place to place with frequent stops at libraries or museums where I could do research; we would spend our days sightseeing; and I would do my writing in the evenings and on layover days. That plan didn’t work, for obvious reasons I should have foreseen. After a day of driving or sightseeing, I have little energy left for writing. Even this simple blog has suffered; my weekly posts have become monthly or occasional.

Do other writers on the road have this problem, or is it just me? Am I too lazy or too old to continue the writing that has been so important in my life? I have known other writers who went on writing well into their nineties, and I should be able to follow in their footsteps.

Even at home, I can no longer maintain the routine I had during many years of freelance work. Housework that seemed so easy when I was younger (or, better, that was often taken care of by a cleaning service) now seems too hard to manage, and my small income doesn’t justify hiring household help now. So, housework too often takes the time that should be spent on writing.

For about fifty years I wrote and edited materials for science education, especially in human ecology. It was occasionally frustrating to work with certain authors or publishers, but on the whole the life was very satisfying, and often it was joyful. I never wanted to change careers.

There have been too many advances in the sciences for me to continue writing competently in that field, though I still avidly read Scientific American and other popular science magazines. I need to do my writing in another area, but what new niche can I find? Many others write more ably than I can about the RV life, travel destinations, and so on. My memoirs were written years ago, and I have no wish to repeat that cathartic experience. The two whodunits I wrote were simply dreadful. What is left?

Perhaps I will go on writing indignant letters to the editor, and posting blogs, about environmental issues that require only superficial knowledge of the science behind them. Heaven knows, there are plenty of those issues—fracking, oil spills along the coasts, women’s right to choose reproductive freedom, wasted resources, GMO’s. In some cases I may even be able to expand a letter or blog post to a magazine article. However this turns out, I need to continue to continue writing in some form about issues that I find compelling. In spite of all the damage humans have done, Earth is still a beautiful planet that must be saved.  In the words of the old Quaker  hymn,

Through all the tumult and the strife
I hear the music ringing;
It finds an echo in my soul—
How can I keep from singing?