Caresharing: A Reciprocal Approach to Caregiving and Care Receiving in the Complexities of Aging, Illness or Disability

By Marty Richards, MSW, LCSW

Rebalancing the Roles in Caregiving So All Involved Are Supported

"When you care for someone who is dealing with the complexities of aging, illness, or disability, you share intense emotions and form deep bonds. You each have the opportunity to recognize what is most deeply human—and most deeply Divine—in the other. This sense of reciprocal sharing—between the caregiver, care receiver, and with others around you—is the essence of the dance in caresharing."
—from the Prelude

The word caregiver typically suggests someone doing all the giving for a frail, physically or mentally challenged, or aging person who is doing all the receiving. Marty Richards proposes a rebalanced approach of “caresharing.” From this perspective, the “cared for” and the “carer” share a deep sense of connection. Each has strengths and resources. Each can teach the other. Each can share in grief, hope, love and wisdom.

Richards shows you how to move from independent caregiving to interdependent caregiving by engaging the spiritual and emotional aspects of caring for a loved one. Whether you are a daughter or son, a husband or wife, a sibling, long-term partner or good friend, Caresharing offers a multilayered, reciprocal process that will help you keep your spirit—and your loved one's spirit—alive in challenging times.

• Sharing Wisdom: What the Frail Teach the Well
• Sharing Roles: Reinventing Family Roles in Sharing Care
• Sharing “Soul to Soul”: A Special Relationship with People with Dementia
• Sharing Grief: Dealing with the Little Losses and the Big Ones
• Sharing Forgiveness: A Key Spiritual Journey
• Sharing Hope and Heart: An Active Process One Step at a Time

• Language: English
• Publisher: Turner Publishing Company
• Release date: Apr 1, 2011
• ISBN: 9781594734601

Marty Richards, MSW, LCSW

Marty Richards, MSW, LCSW, a clinical social worker, is an affiliate assistant professor at the University of Washington School of Social Work. She is a popular speaker on the topics of chronic illness, Alzheimer's disease, elder care and spirituality and aging. She is the author of Caresharing: A Reciprocal Approach to Caregiving and Care Receiving in the Complexities of Aging, Illness or Disability and Eldercare: The Best Resources to Help You Help Your Aging Relatives and Caregiving: Church and Family Together. Marty Richards, MSW, LCSW, is available to speak on the following topics: Caresharing: Congregation, Older Adults and Families Together Keeping Hope and Heart Alive in Caregiving and Receiving Balancing Relationships in Families: A Caresharing Approach Enhancing Spirituality for Those with Dementia and Their Carers Dealing with Loss and Grief in Caregiving and Care Receiving Building on What the "Frail" Teach the “Well” in Coping with Chronic IllnessClick here to contact the author.

Book preview

1

THE DANCE OF SHARING CARE

AN INVITATION TO SHARE CARE

Caring for someone who is struggling with chronic illness or a disability is difficult. If you feel you have to handle every aspect of caregiving by yourself, it is easy to feel quickly overwhelmed. You might believe (and society reinforces this notion) that you are totally on your own. Yet no one lives in a vacuum or is completely self-reliant. The reality is, throughout our lives, each of us has to depend on others; it’s not possible to survive totally by our own skills and wit.

Yet I have seen many caregivers who believed the myth of independence … until the circumstances of caregiving totally pressed them to the wall. They thought they could handle the daily ups and downs, but they found themselves disintegrating emotionally and spiritually—sometimes even physically—before they faced up to their need for assistance. It was only when they realized they could not manage everything on their own that they were finally able to explore a broader meaning of independence. Caregiving turned out to be a disguised blessing. In their vulnerability, they were enabled to reach out to others and discover interdependence.

If you’re like most people, you probably have some ambivalence about the idea of interdependence. It’s not hard to say that you need and want other people in good times, to share the joys of graduations, weddings, births of children, new jobs, and so forth. But acknowledging that you need someone’s help because your loved one is disabled or facing a terminal diagnosis—or because you yourself are ill—that’s another story altogether.

I hear people say, I don’t want to bother my family or friends with this, or I never want to become a burden to others. If you’re thinking along these lines, it makes reaching out to others tough to do and leaves you pretty isolated in your journey. Here’s a question I’ve heard people ask that may strike a chord with you: Does it make me less of a person if I ask for assistance?

Offering help, asking for help, and receiving help is a delicate balance. It is a dance where you move back and forth to the rhythms you sense for yourself and for the one receiving your care. It is a dance with multiple partners, including caregivers and care receivers alike, friends and family, the community of faith, and healthcare professionals.

I invite you to consider a new way of thinking: What if you were to approach caregiving not as a two-step dance (I give and you receive), but as a dance of caresharing with multiple partners where each person is giving and receiving? What if you were to shift your thinking from, The person I’m caring for needs me to We need each other?

A NEW VISION FOR SHARING CARE

Caresharing is quite different from the traditional view of caregiving. A caresharing relationship has some very distinct qualities. For example, in a traditional view of caregiving, a person who has a problem, such as ill health or dementia, is cared for by a caregiver who is stronger physically. By contrast, in caresharing the care partners build on each other’s strengths rather than focusing solely on the challenges, concerns, or problems. Although there is an emphasis on physical, mental, and emotional health in traditional caregiving, caresharers are very aware that keeping their spirit alive is integral to their well-being. Those who share care grow spiritually and emotionally to stand together in their efforts to deal with what life has handed them.

Unfortunately, in traditional caregiving, there is so much emphasis on the person’s illness or disability that, at times, the care receiver forgets who they have been and that their story is uniquely their own. This happens not out of neglect, but because in the press of everything else, the person’s story is way down on the list of priorities. In caresharing, the narratives and stories are a meaningful part of shaping care and enlivening the day-to-day experience of each care partner.

Most of all, in caresharing people are flexible in the moment with one another and work out plans for the future with each other’s input. There are several very important aspects of the dance of caresharing that contribute to its unique way of approaching care.

SHARING ON AN EQUAL FOOTING

In a caresharing relationship, there is a sense of reciprocity, of give-and-take. Even though, on the surface, it might seem that the carer is better than the one being cared for, emotionally and spiritually you are on an equal footing. You each have your strengths and resources. One of you may possess more skills and abilities, and one might have to do more for the other physically or mentally, but both of you can share love and caring. Each of you may have particular concerns, but neither is more or less valuable.

In her wonderful book My Grandfather’s Blessings, Rachel Naomi Remen discusses what it means to be a blessing and explores how we serve each other. The perspective of serving rather than helping is an important distinction in caresharing. In the role of servant, you as a carer are not greater than, better than, or more important than the person you are caring for. You and your care partner are both children of God who are journeying on a long path together. This rebalanced approach to caring enables each of you to have a sense of connection to the best of your abilities and not be limited by a label that makes one less than the other.

LEARNING FROM EACH OTHER

In caresharing, a carer can learn a great deal from the one being cared for, such as life skills, survival techniques, resiliency, and valuable internal resources. As a carer, you might learn much from your care partner about coping methods or about their worldview. The person receiving your care might, in fact, become a mentor. I am reminded of the stories of Jesus in the Christian tradition. He often assisted those who were seen as less than by society, just as those with dementia, developmental disabilities, or chronic illness are often labeled as not whole by our society. He aided people in very concrete ways, just as you might be doing in the mundane tasks of daily care. And he always added to their spiritual life. Among the questions you might ask yourself are these: How is my caring, and my relationship with the person for whom I am caring, adding to my spiritual life? What spiritual lessons am I learning from the person who is receiving my care?

HONORING WHAT IS WHOLE

Caresharing means never having to do it all! It means encouraging your care partner to do what they can still do, and honoring what is still whole in them. Too often I have seen well-meaning carers try to take over all activities of daily living once there has been a diagnosis of some chronic illness. Or carers with good intentions take over the decision making. But just because a person with dementia, for example, may not be able to legally sign checks because of poor judgment, that doesn’t mean that they cannot choose the color of the clothing they wear. Or just because a person is feeling in poor health, it does not mean that they can no longer express their feelings and opinions in some way. Many people being cared for, who can speak for themselves, have told me that others are running their lives.

The next time you feel compelled to take over, remember that people receiving care did not get where they are by being wimps. They are survivors. Encourage your care partner to direct their care and make choices to the extent that they are able to. If their verbal expressions are hindered, help them work out an alternate means of communication. The important thing, as a caregiver, is not to take over what your care partner can still do. Honor what is still intact in your care partner by reaching out to what is whole in them.

PRESERVING THE RESPECT AND DIGNITY OF ALL INVOLVED

This is perhaps the most intricate and important step of caresharing. Working out reasonable alternatives in caring is a big part of this. Even though there may be constraints imposed by the illness or disability from which your care receiver suffers, it does not need to impose limits on respect.

Make a special effort to involve your care partner in conversations about their care. Too often care receivers tell me that they feel other people are dictating what their life is going to be. Speaking to the person you care about with gentleness and kindness, and including them in decision making, are signs of respect. This may have to be limited, given their understanding, but the message you are sending is that they are part of the whole picture.

You can build on the dignity and respect for your care partner by adjusting and adapting situations so they can succeed. Issues revolving around eating are good examples. If, for instance, your care partner has difficulty holding a spoon steady to manage soup, you might choose soup in a cup or get them a spoon with adaptations so they can manage more effectively on their own. In social situations you can make food or pick food from a menu that they can eat without too much fuss.

This idea of respect goes both ways: You also need to make sure that you treat yourself with respect by taking care of yourself. As you treat yourself, you treat the person you care about.

SEEING THE SENSE OF THE SACRED IN EACH OTHER

Caresharing is a practice of treating all as persons of value. It means seeing the image of God or the sense of the sacred in each other, and responding in a way that honors this holiness, no matter what a person’s physical or cognitive limitations or strengths may be. I am reminded of an intergenerational conference that I participated in years ago, where we practiced a nontraditional form of what liturgical churches call the sharing of the peace. One person turned to the other and said, I see the image of God in you, and the other responded, I see the image of God in you. This is something similar to the Hindu Namaste greeting, The Spirit in me meets the Spirit in you, which acknowledges the divine spark in each of us. Picture how this might affect the way you think about care, not as a task to be done but as an offering of respect and reverence.

In the dance of caresharing, both you as a carer and your care partner will struggle with uncertainties and difficulties. In no way do I mean to minimize these. Loneliness may swamp you at times, and frayed nerves may erupt because of the changes in your relationship. Each of you may feel periodically frustrated or discouraged because of the nature of the illness or the complexity of the problem. But if you can see the Spirit within yourself and in each other, you will be better able to face the future together, not as separate entities but as partners. If you can stay grounded in your deep belief in the other person, and figuratively stand side by side, you will be stronger than any one person alone. And both of you may be more open to accepting others who have offered to join you in your journey. The caresharing dance is an exchange of learning and an honoring of interdependence among a growing, multigenerational network of family, friends, and faith communities.

THE BASIC STEPS OF THE CARESHARING DANCE

There are three basic steps in the caresharing dance that you may need to learn, or rehearse a bit, if you’re out of practice. The first, offering help to your care partner, may seem like an old, familiar step. But there are a few nuances in this move that deserve some new consideration. The other two steps—asking for and receiving help—may never be easy for you or your care partner, but each time you ask and receive, the task will become less daunting. It may take practice to be comfortable with these steps of the dance, but as you move through them over and over again, your experience of caresharing will expand in depth and wholeness.

OFFERING HELP

Perhaps you have been taught all your life to help others. So it may seem obvious to you: Someone needs my care, I want to help, end of discussion. It’s natural to want to lend a hand to someone who is having difficulty. However, this can soon become a problem if you do more than your care receiver needs. Sadly, I’ve seen this kind of overcaring when caregivers come to believe that they need to do everything for their care partner at the first signs of weakness in physical or mental abilities. I’ve seen caregivers totally take over making meals for their care partner when there are things their partner might still be able to do to help prepare them. Or dressing a person when they might be able to do some things on their own, such as buttoning their shirt. A social work colleague calls this Help strikes again. This puts the cared-for person in a less than position and becomes a barrier to building on their strengths. While they might have to struggle a bit to do these things, it is well worth the effort for them.

In reciprocal caresharing, helping someone means building on their capabilities and preserving their dignity and self-respect. Even when a person’s abilities or mobility are limited, you can still offer bounded choices. For example, you may not be able to offer the choice to bathe or not bathe, but you may be able to offer the alternative of bathing in the morning or in the evening. This would give your care partner a chance to decide what might work best for them and give them the respect they deserve. Or perhaps your loved one needs help navigating around their home. They might be very reluctant to use a walker, yet the doctor and the physical therapist have strongly suggested its use. The bounded choice might not be whether or not to use a walker at home, but to consider different styles of walker and help them pick the one that might work best for them.

Learning how your care partner is thinking and feeling can go a long way toward ensuring that you won’t smother them with your good intentions. Your role as a care partner is to encourage and enable them to do and be all they can, to respect both their limits and their strengths, not to take over their life. Together, you and your care partner can consider an array of possibilities that they could realistically do, and they can pick from among those choices. Together, you can plan what will work for both of you to make the quality of life better.

ASKING FOR HELP

Underlying the entire text of this book is this basic message: It is okay to ask for help. In fact, I believe that asking for help is a sign of emotional and spiritual strength. I am reminded of the theme of a conference I attended for older adults and carers, Independence is knowing when to ask for help. This might seem contrary to what you believe, especially if you equate independence with self-sufficiency or if you take a certain pride in being able to do what you need to by yourself.

If you have been a giver and a doer most of your life, perhaps the most basic step of the caresharing dance that you will need to practice is getting your heart and your head around the idea that the person receiving your care isn’t the only receiver in this dance. You can be a receiver of assistance from others as well. Learning this step requires knowing three things: when to ask for help, how to ask for help, and how to let someone say no.

When to ask for help. Maybe you are the kind of person who puts off asking for help until things get critical. This all changes when you are in a caresharing relationship. The time to ask for help is now. My ninety-seven-year-old friend Bill put it simply: I have learned to ask for an arm when I need it. That way I can get around better.

Perhaps your tendency is to feel as if you’ve somehow failed if you have to ask for help. When someone asks you how you are doing, you may automatically respond, I’m okay, when, really, you are exhausted, hurting spiritually and emotionally.

Or maybe you just don’t want to be a burden to others. Have you ever thought that asking for help might make you a role model for someone else? Your honesty might give someone who is new to the caregiver role courage to ask for themselves.

By asking for help along the way, you will not only be allowing others the opportunity to give, but also, by learning where and what kind of help is available, you will be building up your reserve for future challenges.

I think of the unlikely people who have appeared in my life when I have needed them, and from whom I received help to get back on course. I remember those faithful friends who have loved me through thick and thin, when I’ve been in need and when I’ve stumbled. As an older woman who became a mentor to me taught me when she was a hundred years old, Friends are those who love us with our warts. I have come to see friends as God’s nurture in my life, and I am forever thankful for their love and care. This is all a part of the interdependence of depending on each other.

How to ask for help. How many times have well-meaning folks—including close friends and relatives, and people in your community of faith—said to you, Just let me know what I can do, or Call me if you need me. Maybe you freeze in the moment and can’t come up with anything. But you could turn this into a valuable opportunity for yourself, and for them, if you do some thinking ahead. Consider how and in what circumstances you could realistically use some help. Ask yourself, What activities or tasks could someone else assist with? and make a list.

Then, when a potential helper inquires, you can respond with a specific suggestion, such as, It would really be helpful if you could shop for me on Friday mornings, or I could really use someone to stay with my dad on Thursday nights so I could go to the support group at the library. Be as clear as you can about what you are asking another to do. Dropping hints rarely is as effective as a clear request: I need help getting John to his doctor’s appointment next week.

Being prepared with a suggestion or two can bring you needed relief, and it also lets people who want to be useful (but are not sure how to help) know exactly what they can do to help. Some people are uncomfortable with a commitment that seems to have no end, so your concrete and limited task would make it easier for them to do what they really want to do—help!

Honesty is a crucial component of asking. If someone inquires about how you are doing, this might be a good time to say, I’d like to tell you, if you have a few minutes. When you can tell the real story of your life to those who ask, you open the door to a straightforward conversation, as well as the potential to ask for the help you need. While there will be some who won’t want this level of information, or who will not understand your feelings and requests, there will be others who genuinely care about you and your loved one, and who will respond gladly. When you are honest with them about what is really happening in your life, they will not have to second-guess how you are feeling or what you need, and they will be able to more realistically assist you.

How to let someone say no. When you ask someone for assistance, it is important to give them the chance to say no. For many reasons, they may not be able to assist you just then, but they may be able to help with another task later on. If you give them a way to opt out, it will also feel less like you are imposing. Although each situation is unique, there are some things you can do to facilitate this. You can acknowledge to the other person that you may be asking for more than they can do. You can ask them if they can help you develop a team of people to assist you with a specific need, such as rides to treatment. And you can thank the person for considering your request.

Also, be aware that some people may have financial concerns about giving help that they are not comfortable raising with you, but these concerns may cause them to be reticent about offering assistance. Although their hearts are willing, their finances may not allow them to be as generous as they would like. There are some ways to make this better. For example, you could offer to fill up their gas tank or give them a few dollars for what they bring. This may get a little tricky because some people may be offended that you offered, but at least they will know you understand that helping has its financial costs.

There is one other important aspect to making room for no—your "no." Sometimes very well-meaning friends and relatives offer something that is not going to be really useful, and you’ll need to be gently honest in declining their offer at this time. Or you may experience a flood of help all at the same time, and you may reach a point of one-too-many casseroles or