This article originally appeared at The Epoch Times: https://www.theepochtimes.com/loving-care-the-story-of-jane-and-sam-and-millions-of-others_3706831.html
Being the primary caregiver for a loved one at home isn’t for the faint of heart.
Recently I spoke by phone with a woman—I’ll call her Jane, as she wishes to remain anonymous—who has spent the past 18 months caring for her failing husband in their apartment. Her dedication and her trials during this time, especially during the pandemic, offer us both inspiration and some warnings about what we may expect if we find ourselves caring for someone at home.
Jane is 77 years old, her husband 91. This year, they’ll celebrate their 27th year of marriage. Jane’s husband—we’ll call him Sam—spent his life in the radio broadcasting industry, first behind the microphone and then in management; Jane worked in the corporate world.
In 2019, Sam suffered an illness that left him temporarily immobile, which was later diagnosed as a urinary tract infection. After almost a week in a hospital, followed by three weeks in a rehab center, he returned home an invalid.
Jane then faced the unknown.
She refused to place Sam in a nursing facility, yet she was unfamiliar with home care for someone who would soon lose his memory, who would need 24-hour-a-day help with everything from bathing to feeding, and who would eventually lose his appetite for food except for a few select dishes.
This is her story—and I suspect, the story of many other readers.
Here’s a part of the email sent to me by Jane before we spoke on the phone:
“These thoughts are not in any kind of chronological order … just written as they came to me.
“When your loved one is suddenly admitted to a hospital, life as you know it stops! There is no more ‘routine.’ There is no more ‘normal.’ Your focus narrows. And, if your loved one is able to come home from the hospital, you’re going to become a caregiver. You just don’t realize you will have that title. I wasn’t prepared for the title. And, what’s kept me going is my love for my husband, my faith, and my sense of humor.
“He was in the hospital for a week … then in rehab for 21 days. Then, I became 100 percent responsible for his care. In the weeks and months that followed, he became weaker and more feeble. Every month, something that had been within his scope of ability was eliminated. He looked forward to getting the mail, but it became too far for him to walk to our mailbox (about 30 feet away from our front door), and the danger of his falling was too great. When he did fall, I could not lift him … so EMS would arrive to pick him up and put him in bed or in a chair.
“Over time, he forgot all his good hygiene habits. He couldn’t choose his clothes for the day. He couldn’t answer the house phone beside his chair before the answering machine kicked in. He couldn’t stand in the tub to shower. He forgot how to turn on his electric toothbrush. He became incontinent.”
Because of his increasing inability to walk or carry on a conversation, and because she feared Sam catching the virus, they first gave up restaurants, then church, then visits with family. For several months of the pandemic, Jane kept all visitors, including family and friends, away from the house, afraid she or Sam would become sick.
“When he became homebound,” she said, “I became homebound.”
Two of Sam’s joys in life were food and televised sports, particularly the basketball and football games played by the North Carolina State University “Wolfpack.”
Though he still watches these games—Jane tapes them if he’s asleep—Sam has no real idea what teams are playing. He watches Fox News in this same state of confusion, unable to follow any of the stories or reports.
These days, Sam also shows a similar lack of interest in eating. As Jane wrote to me: “This is a man who loved food and enjoyed a good meal … and then his taste buds began to change. This has been a very frustrating time for me as I have not been able to find anything he likes to eat, except cold shrimp. Nothing tastes good to him: not vegetables, not hot dogs, and not ice cream or milkshakes. But, he NEVER complains.”
The Hardest Part
Such caregiving is tough, as Jane readily admitted.
When she first began caring for Sam, she felt incompetent. Each day brought new demands and duties, and she learned on the job, seeking advice from others, looking for resources and tips online, and inventing her own ways of helping Sam. Her mother, she told me, would have known more about such caregiving.
“Where’s Mama when I need her?” she asked with a soft laugh.
As for her isolation during this time, due to Sam’s decline and to COVID-19, Jane said: “What I miss most is adult conversation, hugs, and facial expressions in stores because of the masks. Friends called Sam for several months, but realized very quickly that he could only listen but not respond. So calls from them these days are few and far between.”
With the assistance of her daughter-in-law, who is just a few miles down the road, and her daughter who lives two hours away, Jane is able to leave Sam in their care and run errands.
“He misses me every time I leave the house,” she said, “and won’t go to sleep until I come home.”
The Bigger Picture
In a variety of ways, many Americans provide such care for family members, friends, or neighbors.
The online article “Caregiver Statistics: Demographics” defines these people as “informal caregivers” as opposed to paid workers supervising the health of the elderly, the sick, or the disabled. Every year, tens of millions of these informal caregivers provide services to their recipients, ranging from a few hours a week spent running errands or helping them dress to assuming total care of a loved one as Jane does.
The report offers some interesting statistics. The older the caregiver, for example, the more hours they spend at that task. Those in their 70s like Jane, for example, spend 34.5 hours of their week tending to a loved one. We also learn that “on average, caregivers spend 13 days each month on tasks such as shopping, food preparation, housekeeping, laundry, transportation, and giving medication.”
How to Help
If we know someone in this situation, one of the best ways to boost a caregiver’s morale is to call that person. As Jane pointed out, isolation and loneliness are hard on her. Sam sleeps up to 18 hours a day and lacks the cognitive power to carry on a conversation. Consequently, people in Jane’s particular situation—full-time caregivers—are often desperate for human contact. As she said, “When family and friends call to talk with me, it’s the highlight of my day.”
We can touch these people and brighten their day in other ways as well: bringing a meal, sending a letter, or buying them some small gift such as flowers or baked goods. If they are neighbors, we can offer to sit with their loved ones while they take a walk or go to the grocery store. These deeds may seem small to us, but they can mean the world to caregivers like Jane.
The Reason Why
Doubtless, caregivers act from many different motives. The daughter whose relationship with her elderly mother was never stellar may care for Mom out of a sense of filial duty. The son-in-law who quarreled on occasion with his wife’s father may share his home with him out of love for his spouse. Accepting the inconveniences of travel and spending less time with their grandchildren, a brother and sister I know, both retired, take turns throughout the week caring for their 100-year-old mother because they don’t want her in a nursing home
So why does Jane endure these sufferings?
In a word, love.
She told me how much Sam had loved her throughout their marriage, how he never questioned her when she had to stay late for work, how he expressed his gratitude to her even after his illness, thanking her for her many kindnesses, how he spends his days “being positive and loving” to her and to others.
“Even now, he doesn’t have down days,” she said.
“He’s my focus,” she wrote to me. “He’s my purpose in life right now. And his love for me has never dimmed. He’s not aggressive, never gets angry, and has never lost his ‘positive’ outlook. I am truly blessed!”
Jane said, “I pray every morning I get out of bed that I can make a good day for Sam.” A little later in our conversation, she added: “Ever since we met, Sam has treated me like a queen. How could I not take care of him?”
Some stories I write hit me harder than others, and this was one of them. I hope to heaven I would have the guts and the love to take care of a loved one this way.
To Jane and all of you caring for others, let me end with a personal word: Your tenderness and goodness of heart inspire those of us who know of your sacrifices and hardships. By your good deeds, you are polishing up the old words like love, duty, and compassion, and making them shine.
Thank you for being beacons of light and beauty in the world.