Thoughts and Suggestions from an Aging Psychologist.

This is a post for anyone who is a caregiver. You know who you are. I am a caregiver, too. There are many of us.

How Common Is It to Become a Caregiver?

There are variations in the counts of caregivers in the United States, but there is agreement that the numbers are continually rising. Approximately 17% of the US adult population serve as unpaid caregivers for an adult over the age of fifty. That equates roughly to about 34 million people. The typical caregiver spends 26 hours per week in the caregiver role, and 54% of caregivers report being in that role for twenty-four months or longer.

It is estimated that:

• 22% of caregivers are between 50 and 64 years of age.
• 12% are between 65 and 74.
• 7% are over the age of 75.
• Approximately 58% of caregivers are women.

The Cost of Caregiving

While the role of being a caregiver is unpaid, it can be very costly. Consider the loss of income for 26 hours per week that might have been paid work. Many caregivers must resign from their paid job to accommodate caregiving duties, or they are let go. Sometimes, there ensues the actual loss of one’s career or at least a serious derailing of its anticipated course.

There is major attrition to one’s social life and self-care time. The negative effect on caregivers’ health, both mental and physical, is well documented in the literature. It is not unusual, over time, for the caregiver to become what is recognized as a “hidden patient.”

Becoming a Caregiver

While we quite naturally provide care intermittently throughout our lives, it is generally time-limited and, in retrospect, a relatively minor disruption in the flow of our lives. We do not assume caregiving as an identifiable role until we move on to become a Caregiver, when the role has earned a capital C.

Two Routes to Becoming a Caregiver

There are two frequent routes to becoming a Caregiver:

1. A Catastrophic Event: This follows a catastrophic medical, surgical, or other traumatic event that leaves someone suddenly, clearly in need of our care.
2. Gradual Progression: This often describes a developing dementia or other progressive disorder.

Either route ultimately leads to a moment of becoming a Caregiver. Often, we identify this moment only retrospectively, through the rear-view mirror, after we’ve pushed through a period of dense denial.

Moments of Realization

When was your moment of becoming a Caregiver? Was it when:

• A case manager from the hospital called to discuss where your loved one might be transferred when discharged?
• You were asked what plans you had for home care because the hospital wanted to discharge them tomorrow or the day after, at the latest?
• The local police contacted you saying that your family member was found walking about in the town center, lost and unable to find his way home?
• You saw him standing before the microwave in your kitchen holding his “ready to zap” daily tuna melt sandwich and did not know what button to press or even what appliance he was looking at?
• Your daughter called you reporting that she had asked Gramma, your mother, for her special holiday stuffing recipe, and Gramma said that she had never made stuffing and then started crying?

Seeking and Offering Help

People in our social circle often want to help. Freud identified altruism as one of the loftiest, most mature coping mechanisms, with humor being another. We all have wondered how we might support and help a Caregiver.

Caregivers, when asked “How can I help?” often respond with “I don’t really know,” or with a polite “That’s kind of you to ask.” Sometimes, they say “Pray for me,” accompanied by a sigh or soft smile.

The question itself can feel a little awkward. We don’t want to complain, and we especially don’t want to burden the one who asks with our troubles and challenges that, at this point, are clearly more chronic than temporary.

Identifying SPACES for Support

As a psychologist and a Caregiver, I have been thinking about how we might better clarify, even to ourselves, what help and support we need most to feel helped and supported in our Caregiver role. What I came up with is the identification of different SPACES that are often whittled away or completely lost over one’s time as a Caregiver.

I recognize that not everyone has the resources to even consider this concept of space and options. By this, I mean the resources of time and energy, health, ability, fiscal solvency, and social connections.

The 10 SPACES

Here are the 10 SPACES (simply in alphabetical order with brief exemplars):

1. A Space to Complain: We generally don’t like to complain, especially when we’re caring for people who mean a lot to us. We don’t want to overburden our friends and families, but we still need some recognition. A space to parsimoniously complain and liberally hear “good for you” goes a long way and is a bidirectional gift. A friend of mine whose husband had a deepening dementia, still, even far into his illness, was able to say, at the end of the day, “You’re doing a good job, sweetheart.” She said that phrase of praise and endearment kept her going until his passing.
2. A Space for Creativity: Creativity can be extremely important, however you define it. The loss of time or access to a required physical space for creativity is significant.
3. A Space to Escape: Sometimes getting away can mean reading a book. Sometimes getting away means physically getting away.
4. A Space to Grow: We are all lifelong learners. Some people really want to learn new things and develop in new ways, and they need a space to do that. This includes online learning and other educational opportunities.
5. A Space to Play: Caregivers need to have fun. Everybody needs to have fun, but it sometimes gets described a little differently when you’re a caregiver. You need a space to have fun regularly.
6. A Space for Pride (Good for Me): While people don’t like to complain, they do need a place to say “poor me.” A place to be proud of oneself and say “good for me, I did a good job.” This is well-suited to a meditation practice or a journaling practice.
7. A Space to Relax: It’s hard when people who care about us tell us to just relax and kick back, which we tend not to be able to do except in exhaustion after a long day. In truth, kicking back and relaxing, like sitting out on a patio reading a book, is helpful.
8. A Space for Self-Care: A space for explicit self-care is important because, in the gestalt, all these spaces are in the service of self-care. This includes getting your hair cut, getting a pedicure (that’s a big one I like), and making sure you go to your dentist and physician regularly the way you usually did before becoming a Caregiver.
9. A Space to Share (Interests, Experiences, Altruism): We need a space to be sociable and to share interests with others. This often requires a community. Sharing your interests with others, and helping others, serves to ward off loneliness.
10. A Space for Spirituality: If there’s a religious affiliation, an accessible physical space for spirituality is necessary to help us navigate the challenges of caregiving with resilience, and identify what kinds of support we need with greater specificity.

These spaces are crucial for maintaining our well-being and effectiveness as Caregivers. Recognizing and creating these spaces can help us navigate the challenges of caregiving with more resilience and support.

Activity

For you, if you’re a Caregiver, or for someone in your circle of care who is a Caregiver.

10 Spaces

• A space to complain
• A space for creativity
• A space to escape
• A space to grow
• A space to play
• A space for pride
• A space to relax
• A space for self-care
• A space to share
• A space for spirituality

Directions

1. Rank the Spaces: 1-10 with 1 being typically most important to you.
2. Weight the Spaces: How important the space is right now, 1 to 5, with 5 being the most.

Contact me. I hope you’ll find my Spaces concept helpful. I’d love to hear back from you, especially about any creative ways you’ve put this to use.

Photo by the author.