Jack and Lillian were home alone each weekend for several years. From Friday night
after Florence left, having given them their dinners and medications, until Monday
morning when she’d arrive in time to make them breakfast. My parents insisted that
they would not accept a second caregiver after Florence left for the weekend. Even
though I never supported this part of the
POPlan—and it was the one real “hole”—I’d gone along to keep the peace.
Back at home in California, however, I was hardly peaceful. More accurately I walked around on eggshells every weekend during those years, worrying about them alone for all that time and waiting for my phone to ring. Although I wanted to, I knew I couldn’t call every hour. A few times I actually chuckled, thinking this was my “payback”; as a teenager, I’d pooh-poohed my parents’ demands to let them know I’d arrived somewhere safely. Now it was I who wanted them to call and check in. How ironic POP was turning out to be! But it made me laugh, and during POP laughter is almost always a real gift!
When I’d walked into the middle of the crisis that first Christmas, I had to respond immediately and with an infusion of massive help. In addition to the obvious need for a cleanup crew, the geriatric care manager (GCM) introduced me to a number of qualified professional caregivers who could be available for eight- or twelve-hour shifts. The GCM’s suggestion had been to assign Dad a primary daytime person, Florence, and then use others to cover the remaining hours when she would be gone.
The GCM talked of “training” my parents to accept that they needed regular caregiving help even after they recovered from being sick. The GCM further argued we would need separate, additional full-time staffing for my mother after she returned from the hospital. How much would all this cost? Would each of my parents need a full-time individual attendant? And if so, why? I couldn’t even figure out where all these people would stand in my parents’ relatively small apartment?
On a more philosophical level, I also recognized that no matter how many caregivers I supplied my parents, I could never truly keep them safe forever. And what was “safe”? I saw that doing POP would involve my rediscovering the right balance any good parent aims to find: enough assistance and attention to provide safety and enough autonomy to promote their doing what they can for themselves.
Supporting as much self-reliance as was appropriate seemed to encourage my parents to do more for themselves. It also supplied a subtle but positive message that they still had much living left to do. This approach appropriately challenged my parents and seemed to be as helpful in POParenting as it had been in parenting my stepchildren when they were young. But it did require me to stay continually alert in order to achieve that right balance.
I would also need to discover how much caregiving assistance was right for them. Even before the thorough housecleaning was accomplished, I could see that my parents would require ongoing assistance. At the least, they’d need someone to keep their apartment clean and help them with their laundry, marketing, and meals. I intuitively sensed that too much help might be worse for my parents than not having enough, but I knew I didn’t want them to be at either end of that continuum.
Upon Mom’s return from the hospital, the GCM again expressed strongly her view that
Lillian needed her own set of caregivers and needed them 24/7. Frankly I was concerned.
Having that much help in my folks’ home felt wrong for a series of reasons. My immediate
reaction was that it felt like far too many eyes on my folks and they would hate that.
They lived in a two-
bedroom apartment with a modest amount of space. They’d feel overly watched with two
caregivers there all day and every night, I suspected.
But I deferred to the GCM’s superior experience. For once, I didn’t listen to me. My private parents never liked much “oversight,” and as a few days went by, I could feel them bridling against the rapt attention of ever-present caregivers. Hell, for years Mom hadn’t even let in the guys she knew from the building to plaster the damaged ceilings.
Noting their current medical conditions and ages, I easily saw they’d need more help as time went by, so from a financial perspective, as well as other perspectives, I needed to find a level of help that we could maintain. If I spent what they’d set aside for their future care too quickly, we’d encounter a problem in the long run. Since I couldn’t estimate how long a future we needed to plan for, that always made for complicated monetary planning.
My parents were receiving Social Security and Medicare, the two entitlement programs all US seniors are eligible to receive. But because of those programs’ limitations in terms of health and long-term home care benefits, they also had to supplement the benefits they received from the government with additional coverage from private insurance companies. One covered them for the infamous Medicare “donut hole” gap in medication coverage.[1]
Fortunately for everyone concerned, Dad had purchased a long-term care (LTC) insurance policy for himself and Mom before they got into their eighties. If they had purchased these policies when they were younger, their premiums would have been lower. Nonetheless, having their LTC benefits helped out a lot, and doing POP led me to sign up for my own LTC policy. As soon as I saw how it helped my parents and made other POP choices more affordable for our family, I became an advocate. When I applied for my LTC policy, I was still young and took care to get the right policy for my predictable needs.
One wrinkle was that their LTC policy had a waiting period of ninety days after their claims were filed and their eligibility verified. During that waiting period, no benefits kicked in and my family had to pay out-of-pocket for all their help—domestic, GCM, caregiver, whatever wasn’t covered by Medicare.
After my parents’ LTC benefits commenced, we encountered another series of restrictions under their particular policy. First, their insurance company wouldn’t pay for more than one caregiver. Second, Dad had mistakenly signed up for a policy that required him to continue making payments even after he and Mom were deemed sufficiently disabled to receive benefits. Third, Florence wasn’t on the insurer’s listing of accepted employees, known as their “registry.” Only registry caregivers could receive payment under their LTC policy. And probably most troubling, the hourly fee paid to registry caregivers was less per hour than what we’d been paying Florence through the GCM.
Once I understood the contractual limitations of my parents’ policy, I was left with several decisions. Should I continue paying for multiple caregivers with our funds or go along with the terms of their policy that afforded them only one caregiver? If I paid privately for two caregivers, clearly the funds we’d have for my parents’ care would run out far more quickly. I decided to ask my parents’ opinions.
Like many others who’d grown up in or lived through the Great Depression of 1929, they lived with the fear that their money would run out. They voted for one caregiver and that the person be Florence. Even before I’d asked, they’d complained that having people watch them sleep was an unnecessary waste. Mom particularly didn’t like people “underfoot,” as she called it and neither of them felt two people were necessary for their level of limitations. I found myself agreeing with their reasoning on this.
I’d hired the GCM to be my onsite eyes and ears, and we talked at length. The GCM was so unrelenting that I retain two caregivers 24/7 that she threatened to resign if I didn’t follow her counsel. I felt really confused by the intensity of the GCM’s reaction and was unnerved that she would talk of abandoning my parents over this decision.
That left me with a difficult quandary. I wanted sufficient attention for my parents but not excessive help that might actually weaken my parents. I didn’t want to run out of money for their care—a frightening thought most POParents are plagued by—but also I didn’t want to deprive them of what they needed because of funds. I appreciated the GCM’s high standards for care if that was what she was arguing for. Maybe my folks and I were wrong. Perhaps they were so disabled that they needed that level of care? The last thing I wanted was to provide them insufficient caregiving attention.
And I felt particularly vulnerable: were there no GCM on the core team, I wasn’t sure how well we’d do with our long-distance POPlan. Who would do the GCM’s biweekly oversight visits? Since Mom and Dad seemed to be doing so well, I’d been feeling a bit more confident with my parents living so far away. Would I be putting their recoveries in jeopardy were I to cut back their caregiving to a single person, as was covered by their LTC insurance?
For my part, I didn’t find it supportive to have our GCM threaten to “cut my parents loose” if we didn’t choose her decisions. Where could I go for other reliable points of view? I talked with my geriatric mentor, psychiatrist Michael McGrail, who, by his experience with my parents’ personalities and his professional insights, urged me to not overstaff my parents. I contacted my parents’ long-standing doctors and even some of the people from their building to get an idea of what they were currently observing about my parents.
Finally, I listened to myself. I got rid of the double caregiving, let the GCM fire herself, and narrowed their staff down to one. That decision left me with my next set of challenges. Should I work with the insurance company to get Florence on their registry or start all over with one of the company’s cheaper caregivers? If I were able to get Florence on to the insurer’s registry, could I ask her to work for less money per hour than we’d originally agreed? And if I were able to get Florence on their registry in order to keep her working with my folks, could we afford to make up the difference between the insurer’s hourly wages and the original hourly she was being paid through the GCM?
I saw how valuable Florence was and how well she worked with both my parents. They greatly encouraged me to find a way Florence could stay on with them. I got into “POP mode” and started negotiating with the LTC insurance company in order to get Florence onto their registry. When Florence agreed to do my parents’ housecleaning and laundry, I was also able to cut back on the cleaning lady. By this point, we also weren’t paying for the GCM. These changes left us in a budgetary position where I felt more comfortable supplementing Florence’s registry hourly rate, which turned out to be a fine resolution for all concerned.
But like so many seemingly easy developments, little was easy when I was parenting my parents. Now I discovered there was one small wrinkle in this new “Florence only” POPlan. Lillian and Jack had drawn a line in the sand: “Nobody watches over us on the weekends. We like Florence, and that’s okay, but we need our privacy too.” While she was there from Mondays through Fridays, Florence was now my long-distance eyes and ears, but after she left, they were still home alone every weekend!
My parents were adults and they lived three thousand miles away. So, it appeared I had little choice, once they resisted my strong suggestions to have help for them on the weekends. What could I to do if they refused? It wasn’t like I could demand they take a time out or ground them. But if they were hurt due to any lack of attention, I would feel terrible, and I would also feel responsible. I would never have dreamed of trying to parent children long-distance, but here I was with all the feelings of being a parent and there was nothing I could see to do to rectify this out-of-control situation.
As an interim solution I added extra trips to visit them to the POPlan. I reasoned that by increasing the frequency of seeing my parents in New York, I would provide them more direct attention and could also spend more of their “sunset” time with them. In one two-month interval I transported my body across our wide country eight times, and it was exhausting me. I wasn’t that young myself, and I’d postponed some badly needed foot surgery. I couldn’t imagine having my procedure and then walking around on crutches in the midst of my parents’ “situation.” Instead I hobbled up and down the corridors of hospitals and airport terminals that seemed to be growing increasingly long, ignoring my own medical needs.
Looking back to that time, I can see that once I’d taken on POP, I wasn’t clear how to stay true to that commitment while also giving myself permission to take care of me. In my office I had seen too many POParents continue down this sacrificial path that I seemed to have found myself following. I even taught stress management seminars, so I knew for sure that if I didn’t attend to myself, eventually I’d not be able to properly care for my folks. I would have to practice what I’d been preaching and walk the walk.
Then one day I got another phone call from Florence. When she’d taken my parents to their doctor visits, they’d instructed her to have me call as soon as possible. The bottom line was this: No help on nights and weekends was exhausting Jack and insufficient oversight for Lillian. Florence and the doctors were in agreement on this.
With that phone call, I saw that things were about to change again. In that moment, it was clear that they really might be leaving New York. My wish to end long-distance POParenting might now be granted. To realistically appraise the whole situation, I told myself: “Breathe! Breathe deeply enough to have sufficient oxygen go to your brain to think clearly.” There was a lot to consider, and more things that I didn’t know.
Dad and Mom were now eighty-seven years old and might easily live many more years; I certainly hoped so. Predictably, they would require increasing hours of help, not fewer. Our family resources were hardly limitless, and reviewing them at this juncture was important since any decision would need to be grounded in what was financially possible.
We had their LTC insurance benefits, which they were using at the maximum number of hours already, their monthly Social Security checks, occasional music royalties, and the savings my parents had set aside for their later years. Plus, I had a small amount of money saved, but I’d changed professions from attorney to psychotherapist and I was just starting over in midlife to build my new practice when POP had popped into my world. Although the fear of running out of funds loomed and I wasn’t certain how we’d work it out, I knew I’d never give up on my commitment to do POP.
Since everyone but Lillian and Jack agreed that my parents needed more help, the simplest new POPlan would have to have them accept additional hours of caregiving help on weekends and nights. Such a plan afforded them continuity with their physicians, Florence, their home, and beloved New York. But that plan also had long-term downsides. I had to consider not only what my parents would be willing to accept but also whether and how we would afford their accelerating care needs.
Were my parents to “age in place”—that is, stay in their New York home[2]—the number of hours of care required might soon increase drastically, especially because of my mother’s diagnosis of Alzheimer’s. Her illness would likely require full-time nursing care eventually. Both of my parents might require live-in aides in the future, and any hours of care, beyond what Florence already provided, would all be our out-of-pocket expenses, uncovered by LTC.
My other problem with this aging in place POPlan was that if we continued living at this distance from each other, my capacity to share my folks’ sunset years would likely decrease. I might even see them less often than I was now, with the added pressure on me to bring in more income for their escalating care.
An alternative POPlan was that they move in with me. That alternative had a lot of problems. I was gone all day at work and my parents would need a caregiver to help them at least during those hours I was away, if not longer hours. That might have worked out, since they still had home health care benefits under their LTC policy, but several other factors made that option unworkable.
For one thing, a few months prior to Florence’s call, when it seemed Jack and Lillian were forever settled in New York, I’d purchased a house that was not well suited for doing POP. You entered the house by either climbing forty-seven irregular steps in the back or thirty-eight even ones in the front. The first time Dad had gazed down at my amazing view after slowly huffing and puffing his way up those stairs, he’d said: “Terrific view! You should move!” There was nothing about the house’s physical setting that would have worked well for my elderly parents. Likely they would have felt trapped because those daunting steps made going anywhere burdensome. The floor plan was compact and they would have had very limited privacy. There wasn’t even a convenient place for a caregiver to sit down and rest.
Another reason moving in with me wasn’t a good choice was because I didn’t believe my parents and I would get along well living together while I was also parenting them. Many families find that when their roles become reversed doing POP, it’s challenging to live together, especially when there have been decades of living far apart. I didn’t think we’d operate as well under the same roof as separately after living a continent apart and observing my parents’ generational “do it our own way” approach. Although we never had a formal discussion where any of us formally rejected this choice, Jack, Lillian, and I shared the understanding that the place I sought for them—even in a senior residence—would be their own home. They wouldn’t be uncomfortably “borrowing” mine.
A third POPlan—and the most realistic—was that my parents would move into an attractive senior facility. In such an environment they could get sufficient “Florence-like” individual attention to be comfortable and protected while living more communally and maybe socially than in their New York apartment. They would get a chance to dine with others and could become involved in various social and recreational activities with their peers.
If they lived at a facility in New York City, I would again be relegated to long-distance POP. If they were going to leave their NYC apartment and have to face that loss, it would be just as easy to move them out to California as to some East Coast facility. Since most of their friends and living relatives had already moved to warmer climes or to be nearer to their kids, bringing my parents to my neighborhood wouldn’t deprive them of their social support as it might have earlier on.
But the biggest advantage of their coming west to California was that we could become more involved in each others’ everyday lives. Once I formulated this doable POPlan, I began to see them living in California. Lillian would be smiling and relaxed, a shawl lightly draped over her shoulders as she basked in our year-round warmth. Jack would be holding an iced tea in one hand, a music business weekly magazine in the other.
I imagined Dad and me at the end of my workday, talking like we’d done so long ago at the end of his. Then he’d recounted his exciting trips to the music business’ Brill Building or news of another Frank Sinatra recording of one of his songs. I wondered what I’d recount to him about my day at work. In my mind’s eye, more California sun and glasses of iced tea floated by. I could finally stop the bicoastal POParenting I’d never been comfortable with. This would be good, I found myself thinking.
I also was feeling proud of my ability to adapt to the needs of my parents’ changing circumstances. I was congratulating myself on making good modifications to our initial POPlan and thoughtfully moving forward. I thought this new arrangement would give us everything we wanted. They could have their independence, a good climate, and a healthy life. We could be closer, making it easier to see each other and share our everyday lives again after so much time spent apart.
It wasn’t long before the next phone call came in to burst my daydream. This time it was Dad who issued the bad news: “We’re not coming. Your mother doesn’t want to move to California.” That was all he said.
I’d never thought much about death, and my religion of origin didn’t provide a lot of guidance about an afterlife. And whenever I had considered the end of our lives, it was almost like Jack and I would age but stay pretty healthy, and eventually we’d sort of fade away in our apartment. One day we’d just be gone—off with our families in heaven. But like so many things these days, as I’ve gotten older, life has been turning out far differently than I ever imagined.
Since that first December when Jane started helping us out, she’s been the one making more and more decisions for us. I didn’t like that very much, but, since I couldn’t focus very well and Jack clearly wasn’t himself, it seemed that would have to do. I’d long been concerned that moving to California might mean my daughter would run my life, and I had always been apprehensive that my family would put me in a home for the aged someday. My siblings had done that to our mother when she had Parkinson’s and Jane was just born.
When I came back home from the hospital after my horrible bout with pneumonia, I was surprised to see that the house had been cleaned from top to bottom. It was a very different place from how I’d left it. The fact that it was spotless again felt good. But by the same token, now there were also strangers who seemed to have taken over my home. In the beginning, these caregivers Jane had hired were there all the time, even when we slept. She’d insisted that I have a caregiver watch over me and that Jack have one too. I hated having so many people underfoot and watching me.
I also didn’t like that these caregivers cost so much. They didn’t have that much to do for Jack or me, so they sat around much of the day. Jane refused to let us be alone until I laid down the law and wouldn’t let her get her way on that point. After a little while, Jack and I were able to work it out with Jane so we could have fewer people and more privacy in our home, which was a relief. We prevailed on her: no one there late nights or weekends.
That left one person helping us, Florence, whom I liked quite a bit. She had a good sense of people and wasn’t too chatty, which I enjoyed. Florence just seemed to know when I’d be okay with her helping me and when I could do things on my own. She’d been there with Jack since the first day, and he was comfortable with her too. Florence had even worked for another family in our building, which I appreciated because she knew our maintenance staff as well.
Yet, despite our physical recoveries, our clean home, and attentive caregiver, and in spite of Jane’s numerous visits, as time wore on, I watched my husband get more exhausted and agitated. He had never been this way. I was usually the more anxious one. It was disturbing to see him become so easily upset and so often. Psychiatry had been my refuge, while Jack had always been the consistent and calm one. When he needed to go see a psychiatrist for the first time in his life because he had ringing in his ears and, later on, obsessive and suicidal thoughts, I became panicked too. I feared that unless Jack straightened himself out, we might have to leave our home and move into some old-aged people’s home or out to California. Jane had begun presenting these alternatives, but none of the options looked good to me.
Jane had been suggesting for a long time that Jack and I move out to California, her home state. It’s very pretty out there and has been a lovely place for her to live and for us to come visit. But I don’t picture myself as a “California gal.” I’ve never surfed, and I’m not even sure I know what that involves. I’ve never been blond or even particularly suntanned. I am a New Yorker, and by choice. I moved here after Jack and I were married in 1941. We both harkened from Paterson, New Jersey, where we were born and raised, but we became dyed-in-the-wool New Yorkers. And we New Yorkers don’t particularly crave the sun all day every day and don’t necessarily want to know more about beaches and surfing.
I watched Jane very carefully in those early days of her caring for us. And it didn’t seem that she wanted to put us anywhere we’d hate. In fact, as our daughter started visiting more often and doing more things for Jack and me, I saw a different sweetness come over her. Jane was sincere in wanting to listen to us. What we wanted or didn’t want mattered to her, and I saw her struggling to find the best way to manage us and everything else she had on her plate. I eventually realized that she didn’t have an agenda that involved controlling us and was trying to do the right thing. Much of her challenge was in figuring out how to protect Jack and me but still let us do things “our way,” reprising Sinatra.
But I definitely didn’t like what I was now being told. Our doctors had said it was “unmanageable” and “unacceptable” for Jack and me to stay in our home in New York without more caregiver help. Probably it would be best to move closer to Jane but I didn’t like anything about what I was hearing. It was just too late in life to turn into a California girl. I wasn’t going, so there.
The only predictable part about POP is continuous, unpredictable change. Make a plan and see. You’ll need to get comfortable with change! If you want to thrive doing POP—or even survive it—you’ll need at least two abilities: (a) discovering the changes in your parents’ conditions or their environment and (b) responding quickly and wisely.
No one wants to learn that the existing POPlan—the one you worked so hard to make viable in all its details and that everyone likes—needs tweaking or, worse yet, total reconstruction. Your POP experience will benefit if and when you develop a more objective set of eyes and ears to detect changes in your parents’ health and home, even if you’re hesitant to see it. You can train yourself to become more scientific about the situation and to view more analytically any alterations in your parents’ environment, physical body, and cognitive state.
If you’re living at a distance, to some extent you’ll need to rely on others to discover incremental changes, people who see your parents more regularly than you do. A professional caregiver, a doctor, a surrogate daughter, a GCM, and/or even a good neighbor will often be that person. You will want to keep those who are in your core POP group apprised of everyone’s contact information and to schedule regular communications with them. Today’s technology allows this to occur with ease, as you can copy family members on emails, reports, texts, or even Skype up the core POP group for a quick video conference call when needed.
Because of visits and/or your talking with those physically close to your parents, you will have updated, objective, and accurate information. Use it. You’ll still need to regularly reexamine your current POPlan. Is it still viable today? Avoid the temptation to fix what’s working well, but be willing to expand your ideas and fix what isn’t working. Does your plan allow for your responding in a timely manner to observable shifts in your parents’ circumstances? Are you “guilt-tripping” yourself into promising something more than you can give or are willing to follow through on?
To know the difference, look at your current plan from both sides of the POP equation. From your aging parents’ perspective: Does the current POPlan provide me an optimal balance between self-sufficiency and safety? What, if anything, do I not like or find objectionable about the current arrangement? How might this situation be improved for my greater comfort or enjoyment? From you, the POParental perspective: Does the current POPlan take more out of you than you’re comfortable giving—in terms of lost income, time with young grandchildren, or whatever else you value? What did you plan to spend your retirement resources on before POP happened? Does the arrangement give you the optimal balance between sufficiently protecting your parents from harm and your ability to “have a life”? What, if anything, do you not like about your current arrangement and how could it be improved for you?
If you want to do better than “survive” during your middle stages of POP—maybe even aspire to thrive—you will want to maximize some of your personal qualities that have shown themselves critical for your success in parenting and POParenting so far. At the least, you’ve needed your flexibility, your resiliency, and your ability to laugh at the small stuff in life. Now you can work to make these traits even more available to you as a POParent. You will find that focusing your intention and your attention on responding less automatically and allowing patience and outside-the-box thinking will add to your flexibility.
A powerful tool to do all of that and more is something I’ve referred to earlier and I call it “underreacting.” By this I mean responding less automatically and less emotionally to setbacks, complications, and disappointments. It is a technique you can use over and over again during challenges in your POPcycle, when parenting your kids, and with your boss. By underreacting, you’ll be able to lighten up and find humor in the midst of these challenges. When you and your parents can laugh more, everyone around you has more enjoyment.
You’re right if you’ve decided that many things are out of your control during POP. You probably spent a lot of time and effort making a good POPlan. Perhaps it was a great plan. But if your mom or dad refuses to go along with it, what are your choices? If they refuse to see your point of view, it’s simply not a great POPlan. Even if what you want to achieve is in your parents’ best interest, how will you be able to impose it if they disagree or are at a distance?
Here, as in so many POPcycle challenges, the ideal POPlan for one family won’t necessarily be the one for yours: one size does not fit all. You will need to listen to your parents’ wishes as best you can and perhaps make some compromises. In some of your POP decisions, you may even need to do what POParents (and all parents) sometimes do—that is, take some protective action you believe is right even when it’s contradictory to your parents’ expressed desires. You’ve seen that I had to do that. Ultimately, you too may need to choose for them, especially if your parents are gravely incapacitated or otherwise not able to think clearly.
POParenting is not for the fainthearted or the easily discouraged. It’s tricky because unlike when they parented you, you can’t insist that your charges eat their vegetables or turn off the TV. But don’t underestimate your powers of persuasion. Having chosen to be POP responsible, those powers to convince your parents may include the rightness of your position and the limitations of available finances—and, of course, your excellent reasoning. Or maybe it’s really your love and concern that finally convinces your parents to follow your well-reasoned POPlan.