CAREGIVING AND CARE RECEIVING

March 31, 2019

 

 

John 19:16-27

Holograms fascinate me. Holograms are the fascinating way photographers and printers can superimpose more than one picture on the same frame. Take for example our laminated Connecticut drivers’ licenses.  If you look at the card straight on, you see the printed information about height, gender, eye color, date of birth, address, signature, and a lousy looking mug shot. If you tilt the card slightly, you can see three shiny imprints of the state seal and the initials DMV.

I am fascinated by the way you can see different features of the same card by looking at the card from different angles. In a similar way, I am fascinated by the way we can see different features of the same story by looking at it from different perspectives. Take for example the story we heard earlier from the Gospel of John 19:16-27. As Jesus gasps for his final breaths, he sees his mother and his beloved disciple standing nearby. He says to his mother, “Woman, look, your son.” Then Jesus says to the disciple, “Look, here is your mother.” Taking his words at face value, Jesus is assigning the disciple to become the caregiver for Mary.

Those parting words take on different significance depending on what angle I look at the story. On the one hand, I can readily identify with the situation of the disciple. Jesus assigns him to become the caregiver for Mary. In effect he says, “Take care of my mother as if you were her son.” I readily identify with that disciple’s role because over the past several years Lisa and I assumed the roles of being caregivers for our elderly parents. We oversaw the care for Lisa’s mother during the final four years of her life while she resided in a nursing home here in Stamford and later we oversaw care for my dad during the final months of his life, including periods of time when he lived in his own house, then stayed at our house, and finally resided at the Hospice floor in the VA hospital in West Haven. Thus, in this stage of my life, I can readily identify with the situation of the disciple whom Jesus appointed to take care of his mother, Mary.

On the other hand, in my 63 year old stage of my life I have also begun to look at the story from the angle of Mary. Among his dying words, Jesus insured that someone would take care of her. In the course of caring for my mother-in-law and father, I occasionally imagined what it could be like, hopefully in the distant future, to have someone caring for me.

The story about Jesus’ dying wishes is a hologram. We can look at his final words from two sides: from the side of giving care and from the side of receiving care. From what I have observed over the years in our church family and what I have experienced in my family both sides can be burdensome.

According to the National Family Caregivers Association, a Washington DC-based self-help and advocacy group, more than 50 million people in the country provide some care for a relative or a friend every year. About half of these, about 25 million people, provide ongoing care not just for one year, but year after year for seriously ill or disabled family members. We readily sympathize with millions of those who bear the burden of being caregivers year after year, for we can imagine ourselves in their roles. Yet, at the same time, the figures indicate that millions bear the challenge of being care receivers year after year. How can we prepare for both roles? What advice can help us in giving care and/or in receiving care?

As followers of Jesus, who insured that someone would take care of his mother, we consider providing care to our elderly parents, or infirmed spouse, or special needs child to be an obligation we owe, not just to them, but to the Lord. The Apostle Paul, who bluntly spoke his mind on what duties came from following Jesus, wrote: “If a widow has children or grandchildren, they should first learn to do their religious duty to their parents; for this is pleasing in God’s sight…whoever does not provide for relatives, and especially for family members, has denied the faith and is worse than an unbeliever” (1 Timothy 5:4, 8). 

I admire the many in this congregation who have honored this Christian obligation toward members of your families. I respect you for insuring that your elderly parents had a safe place to live and received proper medical care.  I respect you who provide day after day, year after year for your children, especially for the extra needs of youngsters who have special needs. I also deeply admire the men in the Alzheimer’s Caregivers support group who meet in our library twice a month on Tuesday afternoons to encourage one another in caring for their wives suffering from dementia.  These men are among my heroes for fulfilling their marital vows to love and cherish, in sickness and in health, until death do they and their beloved spouses part. In fact, this past week I interviewed two long time members of that group, for their advice on caregiving, since each had cared for a spouse, who had been diagnosed with Alzheimer’s, for more many years.

The first piece of advice they both gave me was that caregivers must take care of themselves. Many caregivers get so enmeshed in giving care that they forget how important and fragile they are as caregivers.

In her book A Loving Approach to Dementia Care, Laura Wayman recalls a training class she taught on being a caregiver. In her classes she routinely asked family caregivers a simple question: “Who is the most important person?” She usually was met with silence and blank stares, which she interpreted to mean that caregivers struggled with the question because they always put the loved one with dementia first. After all, they perceived that their job was to take care of the loved one, not to take care of themselves.

But during one of her classes, an attendee brought his wife, who was obviously showing early signs of dementia. During the class Laura asked her customary question: “Who is the most important person?” The man’s wife was the first to answer, as she lovingly pointed to her husband and blurted out, “He is!” She understood, even in her confused state of dementia, that if her husband did not take care of himself, there would be no one to take care of her. 

Caregivers have loving intentions, but often the task can be overwhelming, even debilitating. Taking care of a loved one is usually manageable in the short run. We can handle helping a family member recuperate from surgery over a week or two, or even over a month recovering from a broken bone. But taking care of a loved one for a long time can wear down even the most devoted spouse or adult child. Especially since in a study by the insurance company MetLife, the average length of time spent on caregiving was eight years!

To borrow an analogy from running, most family members can handle a sprint—a short period of rallying great effort and compassion to aid a loved one over a brief illness—but many caregivers lack the stamina to sustain a loved one through a long-term chronic illness, which more resembles running a marathon.

I admit that I have never run a marathon, but I know a few who have. Runners take precautions to monitor and safeguard their health. Get enough sleep. Eat well. Exercise regularly. Replace worn out shoes. Stretch muscles. Warm up thoroughly. Cool down thoroughly. Wear layers. Vary the course.  Find mental diversions. Pamper injuries. Practice pacing. Train, don’t strain.

All these long distance running strategies equally apply to long-term caregiving. They are not selfish indulgences; they are disciplines needed to finish the course. There is a practical reason for taking care of the caregiver. If the caregiver breaks down physically or psychologically before the relative you care for does, both of you may wind up needing help. There is also a godly reason for taking care of the caregiver. Jesus himself commanded that we are to “love our neighbors as ourselves.”

When I interviewed the two men from the Alzheimer’s Support Group this past week, they offered examples on how they take care of themselves. One works out in a fitness center several times a week, partly for the exercise and partly for the camaraderie. One engages in a genuine conversation with an adult once a day. They regularly attend worship. They both joined the support group as a way to nurture their psyches and handle the stress. Taking care of self is not a diversion from caring, it is a necessity for caring over the long run.

In addition to taking care of their own health, long distance runners are careful not to carry any extra weight on a long run. Runners shed their bulky sweatpants and heavy clothing at the start. For the race they wear lightweight clothing, ankle socks, and super light shoes. Over a long course a few extra pounds adds up substantially. 

Caregiving is tiring enough without carrying extra baggage. Resentment, for example, can become very burdensome. Caregiving is rarely an evenly shared burden among family members. Family members may make promises to visit frequently and offer to contribute toward expenses. They may have noble intentions, but in most cases the responsibility for caregiving falls upon the shoulders of one person in the family. Whether by default or by choice, one member usually assumes the major role.

It is tempting for the one to assume, not only the burden of caregiving, but also the burden of resentment, by which I mean the burden of resenting other family members for not doing their “fair share.” This emotional burden usually appears in the form of questions. “Why am I the only one driving her to doctor visits?” “Why am I the only one sacrificing weekends to visit the nursing home?” “Who, beside me, is paying for these prescriptions?” 

Resentment prompted by comparing what we do with what others do, or don’t do, as the case may be, can become very tiring. One way to discard the burden is to shift focus.

Jesus had a tendency to give orders. After the resurrection, in the last conversation Jesus had with his close friend Peter, as recorded in the last chapter of John’s Gospel, Jesus gave Peter some orders.  Three times Jesus told Peter to “feed his lambs,” in other words, to care for the other Christians in God’s family. At the tail end of the conversation, Peter looked aside and noticed the beloved disciple standing nearby—the same disciple to whom Jesus had entrusted the care of his mother.

Peter, feeling weighed down with the amount of work Jesus imposed on him, turned to Jesus and asked, “Lord, what about him?” “Why doesn’t he help me? Why put all this responsibility on my shoulders?”

Jesus surprisingly showed little sympathy toward Peter. Instead he bluntly replied, “If it is my will that he should remain until I come, what is it to you?” That put a halt on Peter’s protests, but Jesus had not simply intended to put Peter in his place. After confronting Peter’s problem in comparing himself to others, Jesus challenged Peter to shift his focus by adding, “Follow me.” As if to say, “Instead of measuring how much you do in comparison to what others do, put your energy into following me.”

A caregiver can spend much time and energy pointing out what others fail to do. Such scrutinizing can be both consuming and tiring. However pointing out what others fail to do will rarely inspire us to do better what we ought to do. Resenting others for their shortcomings will not invigorate our pursuit of caring for our loved one.

When we become stressed out from caregiving, we sometimes forget that we are caring for someone we love. During my interview with the two long-time care caregivers this past week, one man repeatedly said how much he loved his late wife. Dwelling on how much she had loved him and how much he loved her, as shown in their custom of ending every departure with a good-by kiss, sustained him over thetwenty years he cared for her.

As I said at the beginning, I am fascinated with holograms because they enable us to see a picture from more than one angle. The story of Jesus appointing his beloved disciple to care for his beloved mother prompted me to reflect on some advice for being a caregiver. There is another perspective on the story: the side of receiving care. Some of the best advice I obtained for receiving care came from this book by E. Jane Mall, somewhat ironically entitled Caregiving: How to Care for Your Elderly Mother and Stay Sane. The title may sound humorous to those of us who can imagine ourselves as caregivers, until you realize that Mall was the elderly mother writing to her daughter on how to keep her sanity caring for her mother. The author was the care receiver!

Her most frequent and most important advice was for the eventual care receiver to plan ahead. One fear I repeatedly hear from people in their senior years is that they do not want to become a burden to their children. Another fear I frequently sense in people in their advancing years, even if they don’t say it explicitly, is that they dread losing their independence. They want to live in their own house. They want to drive their own car. They want to take care of themselves without interfering in their children’s busy lives.

E. Jane Mall shared those fears. She wanted to preserve her independence and reduce the likelihood of imposing burdens on her family. She did so by planning ahead. She exercised her autonomy through discussing and clarifying with her children ahead of time what she wanted them to do if she could not handle her finances, where she wanted to live if she could not manage on her own, who she wanted making medical decisions for her if she was incapable or incompetent.

Addressing these uncomfortable topics was a way of being a wise parent, by exercising autonomy and reducing the burden of decision making on one’s adult children. I have deep respect for a friend who prepared, in consultation with her attorney, a statement instructing her caregivers what kind of medical care she wanted if she went through worsening stages of dementia. Providing detailed advice for her family relieves them from the burden of guessing what she wants if the time comes.

We all admired and envied the late Carol Liberty for living independently in her own house until she was past 100 years old. I also admired her for arranging ahead of time with her children what event would trigger her acceptance of moving out of her house. They all agreed that if Carol fell in her house and injured herself, she would move out. When Carol did fall one night and hurt herself, she and her family knew the time had come. Her planning preserved her independence and protected her children from acting contrary to her wishes.

I was so relieved that my father took me to the funeral home with him to prearrange and prepay for his funeral. I was relieved that my father and I discussed and agreed with his doctor arrangements implementing a do not resuscitate code. I was relieved that we discussed and agreed that I would handle his finances when he could not do so. Caring for my father in the final months of his life was emotionally trying, but at least I did not have to bear the burden of trying to guess what his wishes were.

In his final words, Jesus preplanned and sanctioned the arrangements for his mother receiving care and his beloved friend giving her care. May his words spur us on to be more loving caregivers and wiser care receivers.