He was â€œThe Man.â€
Strong, smart, natural-born leader. Charismatic combination of cowboy and scholar. My lover, my confidant, my rock. My Man. As the popular songs says, “I’m everything I am because he loved me.”
Always “healthy as a boiled mule,” in his parlance, his only nod to exercise his daily walk with the dog. He dismisses small nagging health problems, no more than annoyances, really, that set in after fifty.
Busy years pass, his career flourishes, grandchildren arrive. The road ahead is bright as far as the eye can see.
Nearing retirement, a rare form of neuropathy forces him to a cane But still he is a commanding presence. Distinguished Elder Statesman, striding along with his cane. His decline not yet detectable even to his inner circle. Phone calls, emails, invitations far too many to accept.
Still The Man….
……even as his gait becomes slower, sometimes unsteady. Details began to slip past. his adversaries sense a crack in his armor. Things seem to take longer. The questions begin: “Where will he retire? Thinking of traveling? Fishing? Grandkids? He’s offended. He’s not planning to retire! Always assumed heâ€™d die on the job.
Anyway, good luck at replacing him at what he’s paid! Heâ€™s practically indispensable.
Until he isnâ€™t.
Until a sudden attack of vertigo leaves him slumped on the podium, sends him to the ER. Until he slowly, grudgingly begins to face own mortality, considers retirement.
Which, to his surprise, looks good! Parties, plaques, awards. So many people thanking him for what heâ€™s done for them, promise to stay in touch, to seek his advice, guidance.
But they donâ€™t.
The phone is silent, the emails stop. His calendar opens up. His supporters have found another Man who gets the emails, the phone calls, the invitations.
He’s not the Man anymore.
- Time to leave town for awhile. Get perspective on things. Make plans, go on road trips, cruises. Spend time with grandkids. Go fishing. Get to the gym, visit friends.
- But he’s quickly bored of trips; the grandkids are busy, the fish arenâ€™t biting. There’s no assistant trailing him with a notepad. Heâ€™s been â€œThe Manâ€ all his life. Without the his work, exactly who is he?
My heart bleeds.
And I just don’t understand. My retirement was so liberating! Retiring from a career environment gone toxic, I embraced my retirement. Joined a swim team, a jazz band, began writing. But he canâ€™t seem to find new interests. I fret that he is not being challenged mentally, push him into various volunteer activities, therapy, support groups, mind games. One by one he tries them, which I know is only to placate me, and, one by one, finds a reason not to continue. Surely he deserves, wants, more.
But here’s the uncomfortable truth:
I retired to my dreams,
he retired from his.
I don’t know how this retirement things works anymore. I talk with friends, research the internet, find no answers. Conclude that is because there are none. How to finance retirement? Not a problem. Google “retirement” and stand back. Navigating retirement, not so much. Our generation has bought the real estate developers” â€œactive retirementâ€ fantasy – beautiful surroundings, robust health, loving friends and adoring grandchildren
That’s not what’s happening for us.
His body, long neglected, begins to exact its revenge. The buckling knee has to be replaced. â€œDizzy spellsâ€ were really TIAs. Cancers are narrowly escaped (or postponed) by â€œknick of timeâ€ surgeries. Each treatment, each procedure takes greedy bites from his body, his spirit.
I am losing him. In pieces.
His calendar fills to bursting once more; this time with medical appointments. His vision is failing. A fall sends us to the ER on
Thanksgiving; dinner is a glass of Ensure. He walks on his cane at the rate of a wedding procession. I bristle at expressions of pity on the faces of passers-by, wince as people with patronizing smiles address him as â€œyoung man.â€
I wake up heartbroken every morning.
His fragile skin cannot sustain the mildest abrasion. There is almost no time when a wound is not in in some stage of healing. Falls are an ever-preset threat. There is a gaping open wound in my gut.
Attempts to restore my energy, revive my spirit fail, one by one. I can no longer meet the schedules of jazz bands and swim teams. Surgeries, knee replacements, medical appointments, take precedence. Rarely see my friends. Only my love affair with words manages to survive, crammed between the obligations of home and caregiving. I ignore the warnings of doctors, family, friends, that I am not taking care of myself. ” Helloooo?” I think. “Easy for you to say. Have you ever tried this?”
Struggling to right the ship, I begin an aggressive â€œAge-in-Placeâ€ program – remodel the bathrooms, replace the carpets with hardwood. Add a porch, re-landscape the back yard against the day when traveling is
lemonaide and cookies on the porch. Cruises and car trips are difficult now. We spend more time at our lake house. I replace the fishing boat with a pleasure boat, outfitted for comfort, not sport.
A near-miss behind the wheel frightens him into giving up the keys. I am relieved, but my heart sinks. I dread becoming the family driver, assuming the care and feeding of the cars. One more on the ever-expanding “to-do” list.
His eyesight continues to dim, his balance worsens. Eventually it is no longer safe for him to be alone. He bumbles along at snail speed on his walker. There are days when he seems the same as ever and I am seduced into believing that he’s back – the nightmare is ended. But inevitably, days follow when he repeats the same question over and over, forgets what day it is, cannot remember the number of his favorite TV channel. There is no way to predict what the day, the hour, the minute.. will bring. My attempts to relax, recharge, are interrupted by random calls for help with the TV remote, his iPad, the doorbell, the dogs, something he dropped, a robocall. I wrestle with my frustration, knowing his is far worse.
Iâ€™m running on empty
I can no longer juggle the demands of the household and his care on my own. We activate his long-term care insurance, a frustrating, arduous process. The insurance companies seriously underestimated the lifespans of baby boomers; thus their adversarial, miserly approach to claims. But it’s worth the struggle; the carers provide much needed support and relief. I renew attempts at self care; enroll in an on-line writing course, spend time with friends, enjoy a weekend in Puerto Rico with our daughter.
Maybe I can make this work after all…
I encourage more social interaction, board games, maybe an X-box? None of these interests him. His has become a life in small spaces, getting smaller. Fear of what may lie ahead simmers just below the level of consciousness. I refuse to succumb to the fear. Not because Iâ€™m strong, but because of what I have seen it do.
Frustrated, my doctor warns me that I am close to collapse. I need to listen to the carers, let them do their jobs! I listen, tongue in cheek. “Doesn’t apply to me,” I think. ” I’m tired, of course, who wouldn’t be? But the women in my family have ALWAYS taken care of their family members and with far less help. It’s what we do!
And here’s something every caregiver knows:
Love cannot be delegated. To anyone. And it’s impossible to draw boundaries in a world where nothing stays the same.
I struggle to find a balance; resist giving over his care to carers. Until, incredibly, it is me that needs a knee replacement, me that is a fall risk, until chronic bronchitis leaves me bedridden for days. Arthritis, long overdue for someone my age, invades my sleep. My body’s not cooperating. I am chronically exhausted. Short term memory full of holes. Miss appointments, misplace keys, phones, books, shoes even. Caregivers’ fatigue, my doctor says, and this time he is firm. I have to make changes. He prescribes them.
I am losing pieces of myself!
And I cannot clear the path for him if I cannot see it. So finally, I take self care seriously. Admit I need help from the carers and take it. Show up for friends, get time away, exercise, honor time for things that restore me. I am learning to stay in today; to enjoy the commonplace; the aroma of fresh-baked bread, the sun breaking free of the clouds, the musical laughter of children, the embrace of a friend, the antics of my dogs and most of all the gift of faith. I’m learning acceptance.
And so I go on. His health and mine will continue to decline. I do not “have this” and never will. There are just too many moving parts, too much uncertainty. But in the final analysis, what we both need most right now is each other. I just need to hold his hand and be with him.
I can do this.