On Parenting Aging Parents

Caregiving1         “I thought I would have a life,” Sharon said to me. “My youngest is now in college, my husband is nearing retirement and we thought we would have a life. Instead, I am juggling time with my father – who’s in an independent living facility but is certainly not independent – and my mother who lives alone in the house she’s had for 40 years. My mother is, how do I put this?, needy. Suddenly she needs help with all sorts of things and I have been designated The Helper.”

It was one of the saddest mini-conversations I’ve had in a very long time. I had known  Sharon for less than an hour. She is 54. She was visiting a friend of mine, and this report came when 6 of us were having lunch at the retirement condo where I live. Actually, other than one sixty-something I’ll call Joan, I was the only one in the group older than 54. At 86 I happily accumulate younger friends as often as possible, since the rest of us keep dying off. My lunch guests were talking about what a good spot I am in, especially since my children all live in faraway states.Caregiving4 That was when one 40-something said, “I wish my parents would consider moving to a place like this; they don’t want to leave their big, three-story house, and I’m afraid I’m going to be trying to take care of them there by the time I hit my fifties. And that’s when Sharon chimed in with the comment above: “Yeah, I thought I would have a life . . .” And Joan said, with a wry smile, “Welcome to the club.”

I have another friend I’ll call Robert, a business associate with whom I’m not all that close. But because he knew I was writing this piece he told me a similar story. His parents are somewhat younger than this octogenarian writer, but not that much. They had what my friend describes as “a rather loveless marriage” for more than 20 years, but when it ended – with his father leaving to be with an old sweetheart whom “he probably should’ve married in the first place” – that was the last time they spoke. His mother later found a new partner, and both parents, though neither remarried, were contentedly partnered for many years. Not long ago, though, his mother’s partner died, and at about the same time his father’s partner sold their house (which she owned) and moved to another state to be near her daughter. Robert’s father “now rents a room in a home not his own — surviving on Social Security and a small amount of work— surprised he’s still here because he thought he would be dead 10 or more years ago and did not plan to see his 80s.” So much for life plans.Caregiving5 “Both are alone and needy now, in different, complementary ways,” Robert says. “If they could somehow bring themselves to talk to one another, perhaps they could begin to chisel away at the layers of resentment, hostility and blame that destroyed their relationship.” Apparently this won’t begin to happen any time soon, however, as Robert tells me they maintain no interest in communicating. His mother lives alone in a home she owns and craves companionship; his father has little money left and needs a roof over his head, a more secure one than the stranger’s home in which he’s been unhappily existing for more than two years now. Robert laments they are in a unique position to help each other, if they were open to it. As their only child, Robert sees this as the sensible alternative to driving him crazy. But he also admits they might not reflect upon or even begin to realize just how their current lives affect him.

Two messages stand out: Needy parents, and children going crazy as designated helpers.

These two examples may not be universal, but they are surely not uncommon. The upside is that many such parents have children at least able to help. (Many parents also have children who are delighted to be caregivers, resulting in a blessing for all. I’m just not sure this is often the case.) But consider the aging elderly who have no (available) children and even fewer resources; be grateful if you’re aged and have one or the other. The downside, at least across the U.S., is a growing inter-generational tragedy. My unscientific micro-sampling, conducted over a period of several weeks, turned up a half-dozen youngish Boomers caring (with varying degrees of joy & satisfaction) for septuagenarian or octogenarian parents, and a handful of Gen-X’ers caring for Boomer parents.Caregiving3 Two of the latter have serious financial concerns put this way by one: “So I’m spending my retirement savings on my mom, and – considering my choice not to have children myself – wondering what’s going to happen to me.”

The above, should you want to consider it as such, is an open letter to parents of my generation. Here’s the thing: 100% of us are going to die, which will definitely not be the worst thing that ever happens: just look at all the great people who have already done it. Most of us will need some degree of care by someone, in the months or years leading up to our deaths. Some of us have more choices about our final years than others, but there may be ways to get through our geezerhood without upending our children’s lives – if we talk with them about it.

Caregiving6       It might be a conversation worth having.

 

A Reflection – or Two – on Widowhood

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Solitary by Chibbitsuki

For the record: widowhood is the pits.

I can say this with some authority, having inhabited this strange new realm for roughly two months now. And though I concede probably 90% of the widows of the world – more, if you count Syria, Afghanistan, Mozambique, etc – are way worse off than I, still I can feel pretty pitiful about it with very little effort at all. Because:

No matter how independent you might have been for how long – and in six wearying years as a caregiver I have surely gotten used to flying solo – there is a weird stigma thing one now feels, as if an indelible W had been surreptitiously stamped onto one’s forehead. Accented by a gray veil that is technically invisible, but all-enveloping. The status is distinctly different from being single, or divorced, on both of which I can also speak with authority. Singlehood and divorce imply a chosen freedom, an aura of devil-may-care, if you will. Unless one all but takes out an ad proclaiming I don’t want this! I need a partner! (been there done that too, I’m afraid) the solo by choice can have a pretty good time doing exactly as he or she pleases.

Widowhood, on the other hand, is the Great Unchosen. (Well, unless you do in an unloved spouse with an axe or something, and choose to spend your widowhood in the penitentiary.)

It is like being suddenly halved. The other side of the bed is too vast and cold; the placemat on the left too perpetually vacant. The ability to spread out the New York Times without knocking over the adjacent morning coffee does not compensate for the darkness spoken by that empty space. Half of you reads the paper and sips coffee; the other half of you waits in vain for commentary on today’s breaking news or for the request for another piece of toast. The toaster isn’t even half functional any more; it only grudgingly accepts the new reality. Doors

Widowhood is forever opening doors onto sadness. Occasional doors open to rooms full of people who feel sorry for you. They’re only being kind, but still. Many doors open into areas of couplehood where you no longer belong. And who can predict how many zillion times you open the door on coming home, calling out greeting and overflowing with tales that can no longer be told — because who can tell tales into a void?

The world shifts and resettles. Life goes on. Widowhood – even for the young, who lose husbands to stupid wars or senseless tragedies – is likely forever, since we females have an unnerving habit of outliving the males of the species. One adjusts, explores new avenues of finding joy.

But it’s still the pits.

How Not to Die in the E.R.

Doctors and nurses pulling hospital trolley,“I promise,” I said, “that I will not let them admit you; we’ll come back home today.”

My husband, who had lived with congestive heart failure for decades, was so filled with fluids that he was like a walking (sitting; he was wheelchair-bound) waterbed. This was a Monday. I am not medically competent, but I’ve been a hospice, AIDS/HIV and Compassion & Choices volunteer, and I knew enough to know he was sliding toward end-stage CHF.

In the ER I mentioned to assorted intake people that we would not agree to hospitalization. The physician who eventually arrived looked my husband in the eye and outlined the ways she could help him feel better and perhaps live longer (he was 89.) “But it will involve being in the hospital for a few days,” she said; “and I think that is not what you want.”

“That is not what I want,” said my husband, looking her in the eye.

“Fine,” said this saintly, beautiful doctor (name on request; I’ve already sent her a thank-you letter copying everyone I can think of.) “We will do what we can, and send you home today.”Martini

So we went home. It was a long day, and my husband was too weary even to finish his martini (an indication to me that he really didn’t feel well. The nightly martini was important.) He said he didn’t want even a bowl of soup. Bed sounded good, he said, but he was beyond cooperation. I then had to summon the Wellness people in our retirement condo building to help.

“Old person. Unresponsive. Call 911” said the Wellness people, as they helped me get him into bed.

“Do not call 911,” I said.

“We understand,” they said. “We love him too. But we have to call 911.”

The paramedics arrived. Paramedics are invariably the most gorgeous hunks. Two of the six who arrived had been to our apartment months before when my husband landed on the floor – he was 6’4” (at his peak) so it took paramedics to get him from floor to bed. “I remember talking to him about all this art,” one said. “And he was a Marine,” said the other. What’s not to love about paramedics? But. “We must take him to the ER,” they said.

“You may not take him out of this apartment,” said I.

It became an interesting battle.

“We understand,” they said. “We agree with you, ma’am. But we have protocols.”

Finally I said to the guy in charge: “You call your head person at San Francisco General and tell him you have this little old lady standing here with her husband’s DNR, POLST form and DPOA and she says we may not remove him from their apartment.” Actually, I was prepared to go over that person’s head. I have friends at SF General. But to his eternal credit, the in-charge physician  (may he survive and prosper) said, “Fine. Get him in bed and leave him there.”

Fran & Bud 5.28.18
The two of us

One of the paramedics saluted my husband as he left the bedroom.

My husband died three days later, in his own home where he wanted to be, with me scrinched into the hospital bed hugging him into the hereafter.

Had I not argued against the retirement home 911 protocols, and fought against the EMR protocols, he would have died in a cold, bright-lit hospital room with strangers poking and probing him and we the taxpayers spending thousands and thousands of dollars to make his last several days miserable.

What’s wrong with this picture? Only the caption.

The caption 99% of us would want is the one below the snapshot of my husband’s death, at home, with someone we love best hugging us into the hereafter.

Fully 60 percent of the U.S. population get the hospital caption — the one that goes with that blurry photo above — instead . (Another 20 percent get the nursing home caption.) One should not have to have a ferocious on-site advocate to let one die at home in one’s own bed. In addition to the DNR, the POLST and the DPOA there should be a JLMA form: Just Leave Me Alone, for those of us who concede that we’re actually going to die some day and work to keep our end-times as inexpensive and comfortable as possible.Heart

Until such time, I am grateful for the forms we do have, and for the two compassionate physicians who helped my good husband die the death he preferred. May he rest in well-earned peace.

 

In Sickness, Health & Clutter

Some weeks ago – I have lost all track of time – I embarked upon an adventure with this year’s Not-the-Flu. Whatever it is. A bug you don’t want to mess with, that much I can tell you. One marker I do have: exactly two weeks and four days ago my good doctor – who assured me it was Not The Flu – estimated I was over the worst of it. Oh, well.Cold

The Not-the-Flu means you skip the chills and aches and fevers of the Real Flu (count your blessings) and you probably won’t die. But you still have the existential horrids and wearies, a little cough, snuffles, sore throat, and mostly you want to pull the covers up over your head and feel very sorry for yourself. This is not easy to do if you’re a fulltime caregiver, as I am, which in my opinion entitles me to feel REALLY sorry for myself. The caregivee, for his part, has spent the past weeks saying – every time I saw a potential opportunity to go back to bed and pull the covers over my head – “Why don’t you do that?”

In between, since the Not-the-Flu saps your energy but leaves your brain functional, you are left with the question of what to do with yourself. Leaving the house is not an option except for utter necessities, because staying away from humankind is #1 on the recovery-plan list. That leaves you to read the newspapers – which can definitely make you sicker – and drink liquids and take vitamins. Boring. OR! You can dig out past, present and future writing projects and finish them all. Then what?Clutter-desk

For me, the obvious answer is to de-clutter. A cleaned-out drawer is far more curative to this writer than a super-size bottle of mega-vitamins. So in an effort to keep myself from going totally stir crazy, I have now plowed through three formerly messy drawers, the box of Christmas cards – – – and my desk. This is not to say that orderliness, a virtue!, is an ongoing trait I can claim. Put stuff in drawers, close the drawer, most of the time I’m fine. But actually going through messes, throwing stuff away and neatening up – as we used to say in the old country – this is balm for my soul. And therefore, cure for whatever ails.Clutter-piles

Not so the caregivee. My excellent spouse thrives on piles. Piles of clippings, notes, magazines, letters, papers, God only knows what is at the bottom of some of his piles. They are everywhere he regularly inhabits, a comfort and balm to his soul. So ever since I undertook to clear out a few piles (and okay, filing cabinets too) in the small formerly-office room into which we plan to install a day bed, it has been acutely painful for him.

The Not-the-Flu presented a tipping point. A few hours sleep, say, between 3 and 7 AM when the caregivee is not always quiet and still as a churchmouse, made the day bed (it’s on order) ever more attractive; confinement to the house increased my neatening-up urges about 300%. Clutter-cornerToday emerged a pristine corner, utterly cabinet/clutter free.

In retaliation, the caregivee did what probably any respectable partner so threatened would do: he came down with the Not-the-Flu. Oh, me.

Hearts - 2

 

Emergency Medicine Then & Now

cartwheels-sq
The author and sister Mimi, circa 1940

We were, I think, about six and eight. My sister Mimi and I came home from somewhere, hot and tired and thirsty. We leaned our bikes against the side porch and ran up to the French door – which was stuck tight, as often happened on muggy days. I gave the door a mighty wham. But I missed the wood frame I was aiming for and my hand crashed through the glass pane. I stood there saying “Oh my! Oh my!” until Mimi, who was wise beyond her years, reached through the hole, turned the knob and shoved the door open. I think I was still “Oh my!-ing” while Mimi lead me through the living room, hallway and dining room to the kitchen, splattering blood along the way. We grabbed dish towels, tied them around my arm, returned to our bikes and headed for the offices of our friend Dr. Enos Ray.

Like most small-town doctors’ offices in the 1940s, Dr. Ray’s office consisted of several rooms adjacent to his home – about 8 or 10 blocks from our house. He stitched up my wound, after listening to the story and rather cleverly asking if we had left a note of explanation for our mother. Oops, hadn’t thought of that. Mrs. Ray obligingly started calling around to see if she could find our mother before she encountered an unexplained bloody scene on coming home from somewhere Mimi and I didn’t remember. Dr. Ray probably sent our parents a bill for $5.

Scar
The scar survives

My memory of the entire  incident ends with the bike ride home, all beautifully bandaged and hoping we would see a lot of friends on the way. But the scar (now getting pretty dim amidst the blotches and mottles of seven+ decades) is a constant reminder of my days with the World’s Best Big Sister and a current reminder of the changes in healthcare over those decades.

 I was re-reminded recently. I am fond of remarking at the slightest opportunity that I still, in my golden octogenarian years, have all my original parts – give or take a few teeth. Two of those unoriginal teeth are in the form of very expensive crowns attached for the last 15 years to a far more expensive (not to mention painfully acquired) implant. Not long ago, they decided to swing slightly outward, without so much as a by-your-leave. After a moment of horror (and gratitude that this happened at breakfast with no one but a sympathetic husband at the table) I realized I could nudge them back to where they belonged. I took to chewing on the other side. I called my good friend, longtime neighbor and fine dentist Richard Leeds. He said I should make an appointment with his implant friend Dr. Chin. “You’ll really like Dr. Chin,” he said. “It’s kind of like going to see the mad scientist. But he’s the best.” So I waited until Dr.Chin returned from vacation. And indeed, despite the very proper and competent staff who welcomed me, there was something of a mad scientist to the good doctor. “Let me just peeeeeer around here,” he would say, reaching for strange radar-beam lights and x-ray machines, studying my jaw from every conceivable angle.

 Eventually, he said, “There’s good news and bad news. The bad news is that you’ll Grinprobably need an expensive new crown. The good news is that the implant is just fine so you don’t need surgery, so you don’t need me.” Whereupon he shook my hand, said it had been a pleasure, and no, there was no charge.

 Later, summoned back to Dr. Leeds’ office – and anticipating future appointments for expensive new crowns – I thanked him for sending me to the charming mad scientist. He said he had a few not-so-mad-scientist ideas of his own. Whereupon he gave me a crash course in types of crowns and types of implants now in use, and explained that he thought he could screw my errant teeth back to where they belonged. The explanation was accompanied by several rather vehement maneuvers, and followed by extensive fiddlings around, bite-checking, tooth-filing and what have you. And lo, I am back to where I started with the non-original teeth and their original compatriots. Dr. Leeds will send a bill for considerably more than $5, but probably thousands less than a new crown would have cost. I could not help remembering the days of the de riguer family doctor and family dentist.

Sadly, it should be noted here that Dr. Ray has long since gone to his rewards, and Dr. Leeds is no longer accepting new patients. But given the precarious state of healthcare in the U.S., I can only be grateful for the extraordinary emergency care (Kaiser Permanente included) this middle-class American has been blessed to receive.

Would that healthcare were such for everyone.

On Being a Blessing

There was an invisible pall hanging over the banquet hall.

An annual feel-good celebration of a cherished cause, the room was filled with friends and supporters of the San Francisco Free Clinic. The Clinic offers medical care for the uninsured; the pall had to do with the new President-Elect’s pledge to increase the ranks of those uninsured by unknown millions by immediately repealing the Affordable Healthcare Act.

health-care

For 23 years, SFFC supporters have filled the same banquet hall. The annual event, initiated by the late San Francisco investor/philanthropist Warren Hellman and his wife Chris, generates the entire budget for SFFC’s operation. Not coincidentally, the San Francisco Free Clinic was founded 23 years ago by the Hellmans’ daughter and son-in-law, Tricia and Richard Gibbs, two young physicians who decided to throw over the prospects of their lucrative medical practices in favor of starting a free clinic for the growing ranks of uninsured in need of quality medical care.

(Full proud disclosure, this writer and her husband have been supporters of the Free Clinic since its opening day.)

A highlight of the annual event has always been brief closing remarks from the host, and after Hellman’s death, this task fell to the Drs. Gibbs. This year, Richard Gibbs said a few words and then turned the podium over to his wife.piggy-bank-w-stethoscope

“One thing I have now learned,” she said, “is never to write a speech the day before an election.” She went on to explain how the Free Clinic has made incremental progress in its mission every year since its founding, and she had prepared remarks about that narrative with the expectation that this would continue. With the election of Donald Trump, though, comes the realization that the story of ongoing progress – Clinic staff not only provide care, they regularly guide clients into finding affordable insurance – will encounter a speedbump. Acknowledging that many in the room probably voted for Mr. Trump, and that politics would be inappropriate to the event, Gibbs said she still had wanted to find a way her remarks could be relative and upbeat.

So she turned to the story of Abraham. Gibbs is a serious student of the Torah, and would not have had to spend extra time on recalling that story. She noted that Abraham’s narrative was not incrementally always upward, but had its own speedbumps.be-a-blessing

“God told Abraham to be a blessing,” she said. “And I realize that’s what we can do. You are all a blessing to (the Free Clinic.) We can all go out and be a blessing.”

For election week in California, it was a reassuring thought.

 

Loss, Love and Loyalty

broken-heart

Several decades ago a close friend of mine lost her only son in a senseless, tragic accident. He was in his late teens, on his motorcycle, on his way to work at a part-time Christmas season job. All of which added to the unspeakable sadness: a promising life cut short amidst the merriment of a season of joy.

Her friends gathered around to do what we could. We brought food, made lists of callers, tried to keep track of daily needs. My friend’s daughter, a best friend of my own daughter, suddenly found herself the middle child of three girls, all bereft of the one brother they had so loved.

In the large, shifting, changing, sorrowing group of those who came to the house  were a number of young men also in their late teens who had been friends of the one now gone from their midst. They said to the bereaved parents, “We’ll always be here for you. We’ll always remember Mark, and represent him in your lives.” The kind of thing people often say at such times.

These were teenagers. Ordinary kids starting out in life – who had been in their own share of ordinary teenage mischief. In the ensuing years they had their own share of ups and downs. But as it turned out, they were true to their word. They were there for Mark’s parents at Christmas and New Year’s, graduations he would have shared, special times he would have been a part of.

Time passed, Mark’s friends matured as his parents (and this writer) aged.

Recently, Mark’s father died. I happened to be back in town at the time – though like many of those young people I had gone on to life elsewhere – and was happy to be able to be with my old friend and her daughters at his memorial service. It was a bittersweet time: he had lived a full and honorable life; old friends had come to celebrate that life and talk of the good times we had shared. My daughter, still best friends with Mark’s sister although they live on opposite coasts, was there with me.

As I looked around the gathering after the service I slowly began to recognize middle-aged men I had known all those years ago. Several had married women I recognized — also from all those years ago. They were now telling stories of their own children who are starting college or launching their own new lives. They were Mark’s representatives. The stand-ins for their long-ago friend whose memory they would not let die, whose presence they would certify to the mother who lost him so long ago.clouds-stock-image

How to make sense of it all, young life cut short, long life come full circle? How, indeed, to make sense of life and death and loss and continuity?

Mark’s friends, I think, help answer those questions. Out of loss and tragedy come love and loyalty. Out of singular death comes communal life. Out of anguished sadness comes humanity. We all come and go, but we’re all in it together. For a few years or a few decades – but together.