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

solitary_by_chibbitsuki
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.

 

Caregiving and the fight-flight-freeze response

Judy Long
Judy Long

Fight, flight or freeze. Those are the three traditional options we humans have when confronted with dangerous or overwhelming situations. Judy Long suggests a fourth: challenge. For caregivers whose stress levels often keep them on a high-fight-or-flight alert, this new option can come as good news.

Long spoke recently on Caregiver Resilience and Well-Being: Sustainable Caregiving at a meeting in San Francisco. “The ‘challenge’ response,” she told members of the San Francisco Bay Area Network for End of Life Care, “can actually have biological benefits. When you can look at (your stress) as excitement you can actually perform better.”

Judy Long, who is currently Palliative Care Chaplain in the Department of Neuropathy at the University of California San Francisco, has an extensive list of credentials in things like Mindfulness-Based Stress Reduction and Mindful Self-Compassion – the academics underlying today’s insights into the caregiving business. And for those in the trenches of caregiving, small suggestions can offer big help.

“Sustainable caregiving,” Long says, involves “all of the things we do for ourselves when we’re involved with caregiving. I know how exhausting it can be. But we can all be doing things that have great meaning, that are nurturing and nourishing for ourselves.”

Long tells of completing her chaplaincy training, which included a year of training at the University of California San Francisco. One year later, she says, she was asked to take on a six-month chaplaincy at UCSF – assigned to the neonatal intensive care unit, commonly referred to as NICU. “I wondered how to keep myself centered in all that terrible suffering.” The patients in NICU are mostly premature or very sick hands-with-heartsinfants, lying in “isolettes.” While extraordinary progress has been made, and continues to be made, with successful treatments, having a newborn in NICU is stressful for parents, and many infants die. It falls to the chaplain, much of the time, to tell a parent his or her baby will not survive, or will have permanent damage. “I found out I was okay with that,” Long says, partly for having had some time in between training and actual chaplaincy work in a difficult setting.

“I’m a pragmatist,” Long says; “I always ask what works.” She was determined not to fall into the trap of many caregivers: “overwhelm, shutting myself off from caring by building an armor. Caregiving also points back to ourselves.”

Long credits one of her teachers and mentors, Roshi Joan Halifax of the Upaya Zen Center in Santa Fe, NM, with offering guidelines she uses to guard against the common pitfalls of isolation – “there are a lot of opportunities to be isolated while trying to do good” – and the sense of helplessness. “I call them my three points: purpose, connection and control.”

Long’s audience at the recent meeting included many who have chosen, as Long herself has, a career path in the caregiving field. It also included three older women, among whom is this writer, who are fulltime caregivers for their husbands: one with peripheral neuropathy, one with both cancer and progressive memory loss and one with Parkinson’s disease. For the family caregiver, purpose and connection are clear. But control? An elusive element at best.

Which brings us back to the fight-flight-freeze business. Challenge may still be an option.

 

Jury Duty: the Good Citizen job

Jury summons

The dreaded envelope arrived. Superior Court of California, County of San Francisco:

You are summoned for JURY SERVICE (capitalization theirs) during the week, and at the place indicated below. Please read the entire summons entirely…

Who has not received – usually with a little dread – that windowed envelope? Because it means a day, or a week, or a month or more of your life has just been appropriated for Citizenship Duty. That is, after all, what Jury Duty is all about: being the Good Citizen. Doing what you can for the greater good of your fellow citizens.

Actually, I have always loved jury duty. Over the years, my jury duty experiences have ranged from the sublime to the ridiculous.

There was the sweet young thing who scammed a few dozen friends and relations out of a few thousand dollars each, and wanted us to believe she really meant just to make everyone rich and didn’t understand why anybody was mad at her. The unanimous vote to convict came by about the time we got seated and organized.

There were times we deliberated to the point of exhaustion, and times I wondered if a better lawyer would have had us voting differently. There were plenty of times I spent a day or two and wasn’t chosen for duty; usually with a great sense of relief.

There was the time, in a jury pool for a domestic violence case, when the defense attorney introduced his spiffed-up client, and addressed the pool: “There could be implications about Mr. Smith… that he had a few glasses of wine…” The attorney smiled knowingly at us, wanting to be sure we’re all grown-ups and what’s a few glasses of wine after all? I was tempted to say, “Man, don’t give me that bull. You don’t want me on this jury, I will so fry your client.” But I asked to be excused, saying I felt personal bias would make it difficult for me to remain open-minded.

jury-selection-1

The only other time I asked to be excused was when the case involved two corporate entities and some sort of asbestos issue. The judge told us at the beginning that it could run six months. Six months? A couple of corporations wanted 12 citizens (plus alternates) to give up six months of their lives to settle something they should lock their lawyers into a small room to work out? I was beyond irate. The judge invited anyone who felt jury service would be a hardship to come to an adjacent room; virtually the entire pool rose. Uncertain what exactly I would say I began, “My brother-in-law is a chest physician…” and that was as far as I got. “Excused,” said the judge, without looking up. I wasn’t actually very sure where I was going with that explanation, but apparently the judge just wanted to get it over with. I felt sorry for him.

But that’s the way the system works. Good people go to law school, get to be judges and have to sit through all this. More good people give up their time to try to find justice for other good people and perhaps a little justice for the bad guys while they’re at it.

For now, though, I’m opting out. This presents a problem, since apparently you never age out of jury duty and there is no excuse box for Overwhelmed.

One can opt out if under 18, not a citizen, or if one has been convicted of a felony or malfeasance in office. Or if one has a physical or mental disability. None of the above quite worked for me.

At the bottom of the opting-out section, though, I discovered one can be excused if one has a full-time, non-professional obligation to provide care for a related disabled person and alternative arrangements are not possible during court hours. (California Rules of Court, rule 2.1008.)

At last. A reward for the caregiving business. Does caregiving equate to good citizenship? One hopes.