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   CAREGIVING IN A WOUNDED RELATIONSHIP                  

All the passages below are taken from the book “Final Journeys: a Practical Guide for Bring Care and Comfort at the End of Life” by Maggie Callanan. It was published in 2008.

 

Let’s acknowledge the truth that not every relationship is wonderful and loving. It is not uncommon for mean and hurtful people to die in mean and hurtful ways even while someone is selflessly caring for them. So is it possible to bring closure and resolution to a wounded relationship, or one in which love has already died? Can healing still take place where turmoil, rejection, or pain still exists?

Yes, of course. Uncounted individuals choose to care for others even though the relationship is shadowed by pain or rejection. I have met more women than you can imagine who took in and provided care for an abusive ex-husband or a husband who’d left them years before with young children and no means of support. Typically I hear, “My kids are losing their father. I’m doing this for them.”

I’ve also been moved by the many adult children who cared for alcoholic, drug-addicted, or abusive parents. “It’s the right thing to do,” they tell me, or “I’m doing this for me.”

Such caregivers may act out of a sense of obligation and responsibility instilled in them by their culture, upbringing, or religion. They may want to set an example for their own children or desire to guide and support them through their loss. The hope of mending the broken relationship may motivate them, or they may simply feel sorry for a person who would otherwise die alone without care, or in the care of strangers.

Whatever the caregiver’s reasoning, this choice takes a huge amount of courage, and the caregiver deserves an extra dose of love, support, and nurturing. To criticize the caregiver’s choice—-as happens too often—-is to miss the genuine healing that can occur. It can also compound any feelings of rejection and insecurity the caregiver may already have.

Even though you may feel concern for a caregiving friend and worry that he or she may be hurt again, it does not help to say things such as “He was a bum! Why should you take care of him now?” or “You’re crazy! Your hard work won’t be appreciated.” Instead, try something more supportive: “I give you a lot of credit for taking care of someone who hurt you so badly. You are very brave, and I’m sure you have your reasons. Is there anything I can do to make it easier for you?”

I have always believed that the measure of someone’s value is not how that person handles the good times but what he or she does with the bad. To selflessly care for someone despite a history of diminishment, rejection, or even abuse is a job that few would choose. Give those who do this job the support they so richly deserve.

 

LEONA

One afternoon after our weekly interdisciplinary meeting, another nurse on my team, Leona, asked if I would have lunch with her. She looked frazzled, and over lunch she explained why.

“My mother is not doing well,” she told me. “She is quite elderly, and for a long time I have been taking her to her doctor visits, helping her make sense of treatment options, and stopping by a few times a week to make sure everything is running smoothly. Now she needs help every day, and I recently found Theresa to keep her company and care for her. She’s one of the best home health aides I know. I honestly don’t know what I would do without her. My sister certainly isn’t much help!”

“I’m sure you have everything under control, but you look tired and worried. Is there some way we can encourage your sister to help you?” I asked.

Leona laughed ruefully. Her sister, Elizabeth, lived only an hour away, but she claimed that her busy social schedule prevented her from visiting more than once every few months.

“I know it sounds like sour grapes, but after all I do for Mom on a regular basis, you’d think the queen herself was visiting when Elizabeth sweeps in. Mom brags to the neighbors about her visits. She even shows off the articles from the society pages about Elizabeth’s latest charity functions, right down to the details of her gowns. There never seems to be any praise for my life or appreciation for my efforts. I know it sounds childish, but it gets so wearing.”

As tears welled up in her eyes, Leona continued. “And it’s always been this way, from as early as I can remember: ‘Why can’t you be more like your sister?’ ‘You’re just not as pretty as she is.’ ‘You won’t get into the school Elizabeth went to. You would never be accepted.’ ‘You want to be a nurse?’ And the worst: ‘You always have such bad taste. Look at that good-for-nothing you married. I knew the moment I met him he’d leave you high and dry. Now look at the mess you’re in.’”

It was painful for me to hear. Leona was a down-to-earth, compassionate woman who had raised three great kids alone despite her low nursing salary. She was successful in her own right, respected by her peers and appreciated by her patients. Yet even now, one comment or disapproving glance from her mother could make her feel small and inferior.

“Now Mom has taken a turn for the worse. It’s time for hospice, and I don’t know what to do.” She sighed and explained that she didn’t want her co-workers involved in her mother’s care. “I’m afraid she will just get too ugly. I know we hospice workers have seen it all and we don’t gossip, but I just can’t think of facing everyone at the office when they see what my family’s really like. Destroying my professional confidence would be the final insult my mother could deliver. The trouble is, I’ve decided to protect my own reputation and not put her in hospice, but I’m just not sure I can do it alone. I know it is a lot to ask, but I trust you professionally and personally, Maggie. Would you help me?”

Leona wanted to make sure she was making the best judgments, and she recognized that being daughter, nurse, and primary caregiver would make this difficult to achieve, so she requested that I act as her backup nurse as she coordinated her mother’s care privately.

In the months that followed, I visited her mother, Nancy, regularly and spoke to or met with Leona often to discuss her mother’s medications, pain management, and general well-being. It was during one of my visits that Leona asked if we could take a walk into the garden behind the house. I could see she was very upset.

The door was hardly closed when Leona burst out, “I know I should expect this by now, but it gets to me all the same. For two months I have done everything for that woman. Laundry, shopping, garbage, bills, you name it! Every week I even take her out for her salon day and lunch at her favorite restaurant. Still, the only praise she has to offer goes to Elizabeth and her kids for their few small efforts. Is a thank-you for my efforts too much to expect?

“I’ve been brushing off her rejection for forty-five years, Maggie, but I’m not finding it so easy anymore. I don’t deserve to struggle with complicated grieving after she’s gone as well because we couldn’t get closer while she was alive. I want to fix it now! And it enrages me that my sister can’t even be bothered to miss a luncheon at the country club to be with her own mother! What I would give to know why we have always been treated so differently, Maggie. I never felt like she even wanted me. When I bring it up, she flatly denies that there’s any difference in the way she’s always treated us. ‘Are you never satisfied?’ she says. That just turns the blame on me!”

I thought for a minute before replying. “You may never get her to admit the reason; she might not even be able to understand it herself,” I began. “The important thing is that you find a way to make peace with yourself now and recognize your own value instead of waiting for her validation. Leona, when someone is dying, it feels like the sand is running out of the hourglass. While there’s still time, though, you have to keep trying to heal this hurt somehow. You know from your own hospice work that grief is more difficult and complex when relationships have unresolved issues. I am sure you two can work through this.”

Determined to repair their relationship, Leona began sharing even more of her dreams, her memories, and her time with her mother. With the help of a wheelchair, Leona took her on regular outings, and because their “dates” had a consistent, scheduled time, they opened an ongoing dialogue, a thread of human experience. Over the next weeks and months, something began to shift between them. Leona found her mother becoming more open and even a little affectionate with her. She began to tell stories of “the old days,” and they grieved together the loss of Leona’s father so many years before. Their time together slowly transformed into something they both enjoyed.

Weeks later, as her mother’s health began to seriously decline, Leona and her kids moved into Nancy’s small apartment to care for her, and everything seemed to be under control.

Then on my next visit, I found Leona pacing the room, completely distraught. We took another walk through the garden. Just hours before I’d arrived, Leona had come upon a metal box her mother had hidden behind shoe boxes in her bedroom closet. Receipts and a ledger confirmed what Leona had always suspected: even beyond treating them differently emotionally, Nancy had spent thousands of dollars on Elizabeth’s family, including a down payment for her car, money for education, and generous loans with no repayment recorded.

“How can I find peace with this, Maggie? How can I not resent this? I’ve struggled to make ends meet all these years, while she’s been helping Elizabeth. She’s bought Elizabeth’s kids elaborate presents for birthdays and holidays, even though she rarely sees them. My kids, who spend time with her regularly, are lucky to get an occasional card with a check for ten dollars! I thought we had come so far, but I’m not sure I can be in this house another minute,” Leona exclaimed, sobbing.

“Forgiveness must come from within you, Leona. You’re doing all you can, and your mother feels your love, even if she can’t show it yet. Don’t compromise your values. Your mother never understood that you earn love, you don’t buy it. All that money and attention she gave Elizabeth didn’t work, did it? Where is Elizabeth now?

“If she can’t find a way to show love for you in the way you need it, you at least have to know you’re doing your best. You’re a wonderful person, Leona, and you may have to allow love to come to you through others, instead of through her, if that makes sense.”

Leona wondered aloud if she would still be able to provide loving, quality care for her mother now that she felt such rage and disappointment. But before she made any rash decisions, I suggested that she take a few hours to herself. I would stay with Nancy until Theresa arrived for the evening shift.

Leona later told me that she headed back to her home, speeding down the highway with the windows open wide, blasting the radio to drown out the sound of her cries and sobs. And when the need overcame her, she shouted at the top of her lungs.

“I had a lifetime’s worth of hurt, and I knew that if I didn’t get it out, that pain would harm me. And so I screamed until I exhausted myself. I’d cry, and then scream some more,” she said. “I cried in the tub until the water got cold, until I emptied myself, and then fell into bed.

“But I lay there and pictured my mother dying with someone she barely knew to care for her,” she continued. “As much as I appreciate everything Theresa has done to help us, it still isn’t the same as having family there. I thought of how well my children and I have cared for her. I didn’t want to leave the kids to finish it without me now.

“I realized that in the end I had shown her the differences between my sister and me. And I was proud of those differences! I really had done the right thing instead of the selfish thing. And in that moment, I realized that I was more powerful and more honorable and had succeeded in my life, even without my mother’s or sister’s validation.

“And so I went back to my mother and whispered, ‘Mom, I found the box, so I know everything, but I’m here for you even though, and we’re going to give you the very best care we can. I hope by now you’ve learned that the love I have for you is real, as real as it has always been. I never wanted anything more from you than your love and respect in return. But it doesn’t matter anymore, Mom. I realize now that I am bigger than all of this, and so I will stay.’”

Nancy seemed unsettled and restless for two days and then died quietly in the presence of Leona and her kids.

After the funeral I stopped by to help Leona tidy up. As we folded a load of laundry, Leona described to me the incredible sense of release and peace she felt because she had risen above her need to receive her mother’s approval.

I was no longer held down by something that wasn’t going to happen in the way I’d hoped. It is possible to overcome such losses. Ultimately I learned through this experience that it matters less to me now what my mother thought of me, than how I think of myself. My children and I gave my mother exceptional, loving care. We did it because we loved her and it was the right thing to do. That feels really good. I’m so proud of my kids. They were here for me when I needed them— without even being asked.”

Leona was smiling broadly, her face peaceful and open and so very proud.

 

THE BOTTOM LINE

     Caregiving in a wounded relationship deserves extra support and concern from everyone, as providing care is more difficult and the rewards are harder to come by. [157-164]

 

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