The old man sat staring into space for several minutes before suddenly saying, in a loud voice, “Well, I give up.” He pulled out a harmonica and began playing “Way Down Upon the Swanee River.”
I was visiting my 80-year-old mother, who lives in an assisted living facility in Washington state, nearly 3,000 miles from my Maryland home. She has severe Parkinson’s disease and memory problems. My father lives within walking distance, and has visited her every day since she was moved there nearly a year ago.
Mom has an active contempt for “assisted living.” For the previous 18 months, she had lived at home with caregivers coming in for a few hours a day, who helped her get up, bathed, toileted, and dressed; did some housework; and—three nights a week—prepared dinner.
But . . . there were problems. My 84-year-old father suffers from deafness and increasing dementia. Like many elderly people, he is fearful of running out of money. He cut back on the caregivers’ hours. And then I began hearing from the caregiver agency, whose manager told me that dad was forgetting to give mom her meds; that they had found mom on the living room floor; where she had spent the night because dad couldn’t hear her calling for help; and—worst of all—that paramedics had to be summoned one morning because my dad could not wake mom up. He’d overdosed her on her meds the night before (making up for forgetting to give mom her afternoon doses).
Paramedics called my brother, and told him dad wasn’t competent to care for mom. Dad didn’t agree, but he was overwhelmed with her care, which prevented him from going on fishing trips to Canada or to visit relatives. So when he flew to Maryland to attend my son’s wedding last August, he moved mom to a facility I’ll call Lakeside Assisted Living, the best such facility available in my parents’ small town.
I’ve been thinking about what Chuck Colson said on BreakPoint recently, about the need for Christians to take care of their elderly parents if they can afford to do so (as his parents did when Chuck’s grandmother fell ill with terminal cancer) and not simply leave it to the government, through Medicaid, after stripping the parent of all assets. Given our current debt crisis, “do we go back to caring for our own, or do we palm everybody off on Uncle Sam?” Chuck asks. “The Biblical model is quite clear: You care for your own family if you possibly can. Centuries of church history back up this view.”
A lot of listeners took issue with this. Many pointed out that their parents had paid into Social Security and Medicare their entire working lives, and were entitled to receive these benefits once they fell ill. As one man wrote, “We did not choose to pilfer mom’s assets as some do, and she has been living off dad’s pension, Social Security, and her savings. But once her savings run out, I’m very thankful for Medicaid to which mom and dad paid into faithfully for many years so that mom will continue to receive the quality care she receives now.”
Is it always the case that caring for sick, elderly parents in our homes is the best option? In Chuck’s day—with no nursing homes available and far fewer medical options—that was probably true. But I’m not sure that’s still the case. If my mom moved back home with dad, she’d still need care, 24 hours a day—help moving from her bed to her wheelchair, bathing, brushing her teeth, getting dressed, being given her meds throughout the day, and physical therapy. It costs around $5,000 a month for her to stay at Lakeside—all of it paid for out of my parents’ savings. The same level of care at home—whether it’s my parents’ home, mine, or my brother’s—would cost far more, depleting my parents’ savings far more quickly, and increasing the possibility, now remote, that they would eventually have to depend on government care. If we picked up the cost of her care at that point, we would deplete our own savings—which means that we ourselves could end up having to ask the government to take care of us one day.
But put aside the issue of money for a moment. As my father travels further into dementia, his compulsiveness over tidiness has greatly increased, leading him to throw out valued possessions that have been in the family for 60 years or more. His irrational fear of running out of money has led him to sell mom’s wedding ring, to her great distress. He regularly upsets mom out of sheer cluelessness, not realizing how distraught she becomes every time—to give one example—he talks about his decision to sell their house. And he engages in what the staff at Lakeside refers to as “small meannesses”: deliberately stepping on mom’s toes, or smacking her hand with his fork when she says something he doesn’t like. So my brothers and I worry about how he will treat her if she is ever moved back to their home, where they will have to spend far more time together.
I’ve though about moving mom to a facility in Maryland. But that would mean separating a couple that has been married for almost 60 years. Despite their frustrations with each other, my mother would miss my father, and he would miss her. (My father has made it clear he has no intention of ever leaving the town in which he now resides.)
Even moving her to the city my brother lives in, a two-hour drive away from Lakeside, would mean essentially separating them, because my father will not be able to drive much longer. Moving mom to my home would also create problems because we live in an old house with many stairs and narrow passageways; mom needs a single-level, more “open plan” space because she is confined to a wheelchair. And moving mom to Maryland would take her way from the surprise grandson my younger brother gave her two years ago, and whom she adores.
Several times, I’ve asked her, “Mom, would you rather move to an assisted living place near Jerry (my brother), near me, or stay where you are?” Each time I ask, I get a different answer. She often says she wants to “go home,” but I know my father would not agree to spend the necessary money to keep her there. And even if he were, I’m not sure it would be a wise move. In any case, my mother wants to live at home without caregivers—something that just isn’t going to happen.
Another option: Having mom take out a restraining order preventing dad from entering Lakeside. This would prevent him stealing her possessions and being mean to her, at least. Only one of the gifts I’ve sent mom over the past year was in her room last week. Keeping dad out of her room means I could send her small gifts and know they will not be taken from her, because they make her room “messy.” But mom is reluctant to take this step, even though staffers at Lakeside—frustrated with dad’s behavior—have urged her to do so. And it would deeply upset my father.
Could I move back to Washington state, move my mother back to her home, and care for her myself, and eventually, my father? Not unless I want to leave my husband, who works in Maryland, and our young adult sons.
Dad’s going to need more care in time, too, as his mind deteriorates. When he came to Maryland for my son’s wedding last year, he went for a walk one morning and then couldn’t remember how to get back to the house; a kindly neighbor a few blocks away drove him around until he recognized it. His short-term memory loss leads him to ask the same questions over and over again, and he regularly interrupts conversations because he doesn’t realize others are speaking. When he frustrates me, I try to remember what Paul wrote to Timothy: “Do not rebuke an older man but exhort him as you would a father.” In other words: be nice.
I blew it on the final day of my visit. Infuriated with my dad, who was repeatedly snapping a birthday balloon near my mom’s face to tease her, ignoring her plea that he stop doing this, I shouted, “Stop doing that!” When he complained about my yelling, I shouted again, “That’s because you don’t listen!”
Nice ending to my visit.
I think of C.S. Lewis, who took care of his friend’s mother, Mrs. Moore, in his home for decades, despite the fact that she became a great burden, driving Lewis to near despair with her constant interruptions of his work.
I also think about the tremendous medical advances in recent years—advances that have proven to be a mixed blessing for older people. A generation ago, my mother would probably have died from the breast cancer that struck her when she was in her sixties. She survived that, only to fall victim to Parkinson’s in her late seventies. My father had a quadruple bypass operation some twenty years ago. His body now outperforms his mind.
The right thing to do right now seems to be to keep in close touch with the assisted living staff, call frequently, and visit as often as I can. Given the cost—around $1,000 per trip, including the flight, rental car, and lodging—I don’t go more than twice a year. And I know that—within a few weeks—mom will forget that I was ever there, just as she has forgotten my previous visits.
My husband and I have put off indefinitely all thoughts of living overseas, as we would like to do, perhaps as missionaries. My California brother visited mom last Thanksgiving, bringing his adult daughter. My Washington brother visits about every two weeks, bringing his little boy. In effort to make mom’s life a little more palatable, we have agreed to pick up the extra cost—$400 a month—of moving her to a private room, where mom will not have to deal with a not-quite-all-there roommate who won’t leave her alone.
Are we doing enough? It’s a question I ask every day. I keep praying for guidance. But sometimes—like that old man with his harmonica—I just want to give up.
Anne Morse is a writer for BreakPoint.
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