This is an acticle that one of our clients shared with us that we felt was important to share with everyone.
Original article by: Glenn Ruffenach of The Wall Street Journal
I had heard the adage many times: Man plans, God laughs.
I just never imagined it would apply to my retirement.
Ten years ago, my wife, Karen, and I walked away from full-time work. Just four years later, Karen was diagnosed with Alzheimer’s. Within a year, I was a full-time caregiver, a role I still play today. And the retirement we had spent so much time planning and working toward ground to a halt.
The irony: I had worked for more than three decades as a reporter and editor for The Wall Street Journal—and had spent my final years at the paper writing columns and editing articles about retirement and retirement planning. I even co-wrote a book about later life and “how to plan it, live it and enjoy it,” as the subtitle promised.
So, when I left the Journal and Karen retired from teaching, we were about as confident as any new retirees could be. We had our blueprint. We had our nest egg. We had our health. All that was left was to toast our good fortune and enjoy the ride.
Today, that ride is challenging, at best. Alzheimer’s, like many progressive diseases, is, by turns, heart-wrenching, demoralizing and draining. For me, in particular, our experiences have upended much of what I knew, or thought I knew, about later life—for instance, the certainty that I could easily mix leisure, work and volunteering.
At the same time, though, I find that I’m getting an education—learning about parts of retirement I had discounted or overlooked, and discovering what matters most as we age. Karen and I might have been dealt a bad hand, but we’re still very much in the game.
A full-time job
To start, and there’s no need to sugarcoat this, our days revolve almost entirely around Karen, who needs help with everything: eating, dressing, washing, using the bathroom, taking her medicine, brushing her teeth, combing her hair, getting in and out of bed—the list goes on. Saddest of all, Karen rarely speaks any longer. Alzheimer’s has robbed me and my best friend of conversation.
All the above is set against a backdrop of paranoia, a common feature of this type of dementia. At times, Karen thinks “bad people” are coming to get her and, as such, insists she must leave our house. Which is what she did one cold evening two years ago, slipping out the back door while I was on the phone. Almost three terrifying hours later, the police found her, huddled on a neighbor’s porch. (We now have an alarm system that alerts me whenever an exterior door is opened.)
For my part, caring for Karen is an honor, a chance to keep the promise I made her 47 years ago, “in sickness and in health.” At least that’s what my heart tells me. My mind, on the other hand, increasingly is asking: Are you sure you can do this?
Fatigue is far and away my biggest problem. I am always tired, primarily from helping Karen navigate each day, but also from losing sleep over what lies ahead. Namely: How, and how quickly, will her symptoms worsen? (And they will worsen. That’s how this illness works.) Can I continue to care for her on my own? (Yes, I can hire help, but I have this notion—part principled, part foolish—that this task is my responsibility and mine alone.) Will I need, at some point, to move Karen to a memory-care facility? (Or should I do so now? A good friend thinks Karen could benefit today from the specialized care in such settings.) And how will our nest egg hold up when it comes to paying for such services? (The cost for quality care in our area starts at about $12,000 a month.)
Worse, these anxieties, at times, are salted with moments of anger and self-pity. I recognize, of course, that life isn’t fair and that many families are grappling with circumstances far crueler than ours. That said, I can’t help but wonder about what might have been: the classes and lectures we had hoped to attend, the volunteer work we had planned to pursue, the trips we had wanted to take.
Retirement, sort of
And this, when I’m at my lowest, is where my faith invariably steps in. Understandably, Karen and I no longer have the retirement we imagined. I can sulk and stew about this—or I can accept it (“to every thing there is a season”) and be grateful for the blessings we have: each other, and the love and support of our family and friends. Best of all, we can still enjoy retirement. Although now, I like to think of it as our “mini” retirement.
Each day, Karen and I go for a slow walk; at least once a week, we go to lunch or dinner with friends. We sign up for painting classes, designed for individuals with dementia and their caregivers, and play “senior bingo” at our church. We visit our two daughters and granddaughters. We go to the movies (weekday matinees, although Karen typically falls asleep); we go to our neighborhood swimming pool in the summer and paddle around the shallow end. We drive a good friend to her medical appointments. We look through photo albums, and we sing songs from Broadway musicals. (Astonishingly, Karen is still capable, at times, of singing, if not speaking.) We hold hands, and we smile at each other—always.
In short, we seek out and cherish small moments. Which, to be honest, have always been the best parts of our marriage. And are now the best parts of our retirement.
Still, our experiences also have highlighted—for me, the supposed retirement expert—several lessons about retirement. It’s one thing to study and write about later life; it’s quite another to live it and see things I wish I had done differently or, in particular, hadn’t procrastinated about.
In hindsight, for instance, Karen and I should have downsized. We had talked about it for years: selling our large empty nest (with our bedroom on the second floor) and moving someplace more manageable and affordable—a home or community where we could “age in place.” I was certain it would be the right decision in the long run, especially if one or both of us became ill or disabled.
As is often the case, though, inertia got in the way. Today, I have my hands full caring for Karen; caring, as well, for our house and our large yard is a headache I could have avoided.
Then there’s travel. Karen and I took several wonderful trips in the four years before her diagnosis, but there were a number of dream journeys still on our bucket list. (Example: a train ride across Canada.) We had assumed, of course, that we would have plenty of time—a dozen years, at the least—to live out these fantasies. Clearly, there was no hurry.
Again, in hindsight, I wish we had managed our dreams differently. I don’t think we would have necessarily crammed more trips into the first years of retirement. Well, maybe one or two. But we could have done a better job of identifying and pursuing the wanderings that were most important to us.
That idea—giving priority to our travels—seems obvious now. Looking back, I suppose I thought that life would have more respect for our retirement plans.
A long-term-care mistake
A financial mistake also nags at me. I think it’s critical for would-be retirees to have some kind of plan to pay for long-term care, if needed. (A federal study in 2019 found that fully 70% of adults who reach age 65 will need some type of long-term services or support before they die.) So, in my late 50s, I began studying the possibility of buying long-term-care insurance for Karen and me.
The problem: I started my research too late. I ended up qualifying for coverage—but Karen didn’t. If I had acted earlier, the reason, in all likelihood, never would have surfaced, and Karen wouldn’t have been rejected.
Don’t misunderstand: I’m not saying LTC insurance is for everyone; the drawbacks are well-documented. But again, planning for the possibility of long-term care and its attendant—and possibly staggering—costs is essential. This is something I’m still researching and discussing with our financial adviser. For the moment, though, any bills tied to Karen’s care will come entirely from our savings.
There is one regret I can’t shake: I’m convinced, today, that Karen’s dementia began earlier, perhaps much earlier, than we realized. I either missed some of the signs (for instance, her gradual loss of interest in gardening, an activity she loved), or simply was in denial. Yes, we eventually began seeing a neurologist. In hindsight, though, it probably wasn’t quick enough. I would advise anyone today to seek help sooner rather than later—in particular, given new drugs that can help slow dementia in its early stages in some patients.
Friends, on occasion, ask me if I have had a “Hollywood” experience with Karen. Usually, they’re referring to a closing scene in the film “The Notebook,” in which a wife, who has dementia, has a moment of startling clarity and suddenly recognizes her husband. (I think Karen knows who I am about half the time.)
It wasn’t Hollywood, exactly, but a recent happenstance just might sustain me for whatever lies ahead. I was helping Karen dry off after a shower, and I whispered to her, as I often do, “I’ll take care of you, honey. I’ll take care of you.” As a rule, Karen—beyond nodding her head—no longer replies to anything I say to her. But on this particular morning, she looked up, smiled brightly, and said: “And I’ll take care of you.”
Yes, you will, honey. You always will.