Caregiving is not for sissies !

Caregiving will never be a one-size-fits-all.

                                         Nancy Kriseman

Caregiving is complex

Feelings

Caregiving is not something about which we have one feeling, one perspective, or one story. A multitude of feelings are often associated with caregiving. For one caregiver, the experience of caregiving may be a burden; for another, it is a privilege. For many, it is both.

Choice

Caregiving is always a choice; sometimes it seems thrust upon us. Caregiving consistently requires hope, courage, and skill to navigate the resources, the personalities, and the endless challenges.

Hurdles

Not all recipients of care are consistently grateful, not all required services are easy to access, and all of us have personal limits. Getting agreement of all of the participants regarding the scope of caregiving takes skillful listening.

How common is it to be a caregiver ?

Rosalynn Carter, wife of former president, Jimmy Carter and a well-known mental health advocate, wrote:

There are only four kinds of people in the world:

• – those who have been caregivers,
• – those who are currently caregivers,
• – those who will be caregivers and,
• – those who will need caregivers.

 

The Canadian Association for Retired persons reports:

• – more than 8 million Canadians provided informal care to family members or friends. More than 1 million of those caregivers were over than 65.
• – 44% of caregivers between 45-64 care for both a parent and children.
• – 35% of Canada’s workforce provides informal, unpaid caregiving while working.
• – One in ten caregivers spend more than 30 hours a week providing care.
• – 80% of all care given to seniors in the community.
• – 30 % of services to seniors in institutions are provided by informal caregivers.
• – The economic value of caregivers is astounding: caregivers who look after seniors save Canada’s health care system between $24 billion to $31 billion annually.

Caregiving has its challenges    ……..

1. Sharing the caring.

In an ideal world, in an ideal situation, caregivers and recipients of care are willing partners. A commonly expressed frustration of the recipient of caregiving is that they have lost control of their own care. They complain that people are making decisions for them; that they themselves are not consulted about their own lives.

The degree to which people can participate in decisions about their own care depends on their physical and cognitive capacities, where they reside, and their caregiver circumstances.

2. Maintaining your own health as a caregiver.

Healthy caregivers make better caregivers.

It is well documented that long term caregivers are at risk for physical health issues themselves. They are also at risk for compassion fatigue, the consequence of which is reduced empathy.

Over time, failing to heed the old adage, “ Put your own oxygen mask on first” can have serious consequences. It takes practice to find a balance between caregiving and self-care.

Caregivers are also confronted with emotional reactions generated by watching loved ones suffer. Chronic sorrow and vicarious trauma are common. Fortunately, a large body of literature dealing with these physical and mental health issues is available on the internet for professional and personal caregivers .

3. Accessing resources.

How people experience caregiving is different for each person. Support of families, communities, and health care systems often varies, sometimes dramatically. Even in the Canadian health care system, long term caregiving can contribute to financial stress. In addition, what is needed at one time may differ from what is needed days or weeks later. Caregiving recipients may also have their own preferences in terms of what resources they want to accept.

The gifts of caregiving

1. Memory making – enjoying the experience.

Many people report that the time that they spend caregiving is special. They feel a sense of accomplishment, an enhanced sense of humanity, an increased depth in their relationships, and a general appreciation of their own health and life. Cherished moments become cherished memories.

If you are a journaller, I encourage you to develop a practice of recording and reflecting on your positive moments and experiences of caregiving.

2. Avoiding regret.

Coulda’, shoulda’, woulda’ are regrets that caregivers do not want to accumulate. Caregiving invites us to priorize what we value and to come to terms with the reality that we cannot be all things to everyone, all of the time. If we attempt to do so, we actually reduce our capacity to be consistently present for people in our lives.

3. Perspective taking.

People who are in need of caregiving have varying abilities of participating maturely in care, of expressing appreciation, and of recognizing the needs of others. Taking this into account means seeing the world from their perspective. It does not always mean privileging their perspective.

Exploring perspective is the focus of this month’s writing strategy.

Written journals and Caregiving

Research on caregiving and writing suggests that caregivers benefit from writing in different ways. Caregivers need to use writing in a manner that “matches” their style of being and their needs.

Writing from an objective perspective may be helpful to one person and writing subjectively may help a different person. In other words, some people can use writing to assist themselves to be effective caregivers in a practical way, and others may need or want to reflect on the human experience, including the stressors and the rewards of caregiving.

Daily caregiving notes are helpful for organizing care.  No one form fits all. You may want to review a number of forms that would help you create meaningful records for your situation. Here is the link to a free site that has numerous examples.

Some caregivers benefit from reflecting on the emotional/personal experience of caregiving. They may or may not prefer to write about difficult situations or feelings. Those who benefited the most used positive, optimistic, future-oriented language.

For suggestions on caregiver journaling  you may want to refer to a free website.

For additional prompts, you may want to check out the following book for purchase:

You want me to do what? Journaling for caregivers. This book allows users to process their stress and celebrate what is right for them. It provides readers two hundred open-ended sentences for exploring feelings and situations in the safety of a private journal.

Research

There have been a sizable number of studies done to explore the benefits of writing for caregivers. Early research on journaling has focused on writing about trauma for an allotted duration and a frequency.  These early studies of caregivers and writing had high levels of participants drop out.

Many caregivers prefer not to focus on trauma. Caregivers need much more flexibility when writing. Researchers are finding that it is necessary to adapt research designs to accommodate the realities of the caregiving situation.

More recent research has demonstrated that caregivers use writing for a variety of reasons and have varying styles. “Objective writing” (using an emotionally distance style), writing over longer periods of time, and caregivers having a choice of what to write about, have been associated with beneficial results.

The research question has shifted from “Is journaling beneficial for caregivers?”, to the  question “Under what conditions is writing beneficial to caregivers?”

Here is a sampling of the research emerging in this field of study:

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Expressive Writing for Cancer Caregivers

Harvey, J., Sanders, E., Ko, L., and Manusov, V., & Yi, J. (2018). The Impact of Written Emotional Disclosure on Cancer Caregivers’ Perceptions of Burden, Stress, and Depression: A Randomized Controlled Trial.  Health Communications, Vol.33, p. 824-832.

As a result of a brief three week intervention, the study demonstrated the potential for writing to have beneficial outcome on caregiver burden, stress, and depression.  Writing about feelings and about benefits of caregiving reduced caregiver depression. Writing about time management, without an emotional component, was also effective in reducing caregiver stress.

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Mackenzie, C., Wiprzycka, U,.Hasher, L., & Goldstein, D. (2008). Seeing the glass half full: optimistic expressive writing improves mental health among chronically stressed caregivers. British Journal of Health Psychology, 13 (Pt 1): 73-

This study of caregivers found that those benefited from writing used positive, optimistic, and future-focused language.

Reading

Zen and the Art of Illness is a collection of gentle and insightful reflections on single days, sometimes single moments, in a year-long journey that began following her husband’s cancer diagnosis. In it, Ronna invites us to “transverse the landscapes of life-threating illness, ‘neither in fear nor in hope, and yet not without hope.”

James Miller (who is the co-author of Finding Hope, has his own web site.

James Miller has published numerous reader-friendly books on caregiving. Writing Strategy of the Month (February 2021)

Journaling about yourself, in the third person

There are three points of view in writing. First person is very personal and uses pronouns such as “I” and “me”. Second person writing uses “you” and “yours”. Writing in the third person is writing from a third-person perspective, as an outsider looking in and uses pronouns like “he”, “she”, or “they” while referring to themselves. By writing in the third person, the writer stands back, or outside of the situation with the intention of seeing the situation more objectively.          

Think about a caregiving relationship that you are in or may be in at some point. You may be surprised to realize you are already in a caregiving relationship whether it be with children, family, neighbors, or colleagues. Before writing, take a moment to review the questions below and reflect on your caregiving situation.

• What is your relationship to the person you are caring for?
• What condition are they suffering from?
• What is being expected of you?
• What is the expected duration of the caregiving?
• What are the other demands in your life?
• What experience do you have with caregiving?
• What are the expectations you have of yourself in the situation?
• What expectations does our culture impose on you?
• What resources are available to you?
• What support do you have for yourself?
• How are unexpected events, like Covid-19, influencing your caregiving?
• What is a reasonable objective for your short term and long term caregiving?

Once you have considered the questions, please describe your caregiving relationship in the third person. Use “he or she” even though you are writing about your own life.

After writing your journal in the third person, then write what you are noticing about the total writing experience and what you are noticing about the content of the written piece.

Here is an example of the beginning of written journal: (Remember, Grant is writing about his own situation):

Grant is a 57 year old executive who has retired early in order to be the primary caregiver for Margaret, his wife of 34 years. They have had a rewarding marriage and share three children and 4 grandchildren, who unfortunately do not live close by. Margaret was for the most part of a stay at home mom. Grace, Margaret’s sister, works full time at her job but helps take care of Margaret in her spare time.

Grant is finding the challenges of the food preparation daunting due to Margaret’s special dietary considerations during chemotherapy. His project management skills are put to good use coordinating appointments, medications, home care, and therapies involved in what they hope will lead to recovery. He and Grace, however, recognize that Margaret’s condition is likely progressive.

Grant would continue to write in the “third” person as the entry continued. He might go on to write about feelings, challenges, or special moments. He writes as if he is describing himself as a third person.

 

Photo Question of the Month (February 2021)

Please write your answer to this question in the third person.