Will Your Self-Esteem Survive Caregiving? How Having a Plan Can Help

April 24, 2024 ◊ By Elisa Everts ◊

Will Your Self-Esteem Survive Caregiving? How Having a Plan Can Help

What Does Stephen King have to do with Caregiving?!

In Stephen King's "Misery," a famous author named Paul Sheldon is rescued from a car accident by his self-proclaimed number one fan, Annie Wilkes who then "cares" for him. However, Paul soon discovers that Annie is a psychopath and becomes his captor, refusing to let him leave and subjecting him to various forms of terrifying abuse and manipulation. The psychological thriller explores the dynamics of power, control, and obsession between the caregiver and the patient. Of course this situation is a tad extreme, but it illustrates how powerless you can feel when you're in the position to be cared for by others. Care receiving is not always a bed of roses (in fact, it can feel more like a bed of nails!).

How to Prepare Your Own Philosophy of Caregiving

If you ever become injured or ill, in a position where others will need to take part in your care, you are going to want to think abut your wishes ahead of time (in fact, it's a good idea to think about it now, before you need it, because you may not have the clarity of mind to do so when you're in the hotseat) and to establish some ground rules for yourself and your caregivers. How will you do this?

First, you will need to explore some of the problems and wishes you may not have thought of. Second, you will need to decide what your wishes are. Then, you will need to learn how to communicate those wishes. Finally, you will want to create a system or a set of guidelines for everyone to follow.

Here are seven questions to ask yourself. 1) What kind of care am I going to need?

Do I need groceries, meal preparation, or do I need help eating? Do I need rides to the hospital, or do I need someone to go in with me to see the doctor and help take notes? Do I need help getting dressed or taking a shower? Make a list.

2) Then ask yourself, Who am I comfortable helping me with each of these tasks?

If possible, you want to choose your helpers in advance. That's much easier than trying to make "staff changes" after people have already started helping you. Knowing the answer to those first two questions will help you assemble your personal care team with confidence.

3) How do you want people to talk to you about your illness and your prognosis?

If for example, the doctors are saying your illness is terminal, do you want people talking to you about your potential death? ´What are your feelings about sympathy, empathy, compassion and commiseration? ´

Do you want to tell people about your cancer yourself or would you rather someone do it for you, and who? ´Who reports on your medical journey? In what modality? In what level of detail? To whom? ´

You get to set the rules for what people can talk to you about, but you really need to do this in advance. It's much harder to have a conversation about undesirable behaviors that have already taken place than about potential behaviors before the fact.

4) How are you going to manage information about your cancer/illness?

When you receive information do you want it straight or with a little sugar coating? Who do you want to know what?

5) How do you want your space organized?

Do you want chairs around your bed? Do you want your bed moved closer to the bathroom? Do you want a bookshelf within reach? Do you want the TV on or off?

6) Who do you want to visit you when?

How do you want them to behave? Establish your own preferences for visitation. How long do you want people to stay? Do you want people to be with you when you are asleep or unconscious? Do you want people to watch you eat? Do you want people to eat in front of you? Do you want TV, music, conversations around you that do not include you? Do you want people to cry in front of you? Do you want them to see you cry?

Are there behaviors you want to ban (e.g., crying, laughing, funeral talk, gallows humor, other people’s cancer/illness stories, eating in front of you, announcements on Facebook)? Who gets to see you bald? Do you want them to talk about your baldness or ignore it?

7) What are your preferences regarding gifts and acts of service?

What kind of gifts are desirable and what kind are unwelcome?

List the behaviors you do and do not desire from others. ´

Let me assure you that every question in this list will be easier to deal with in advance than after the fact. Once you have established your wishes, you need to communicate them to your personal care team. One way to do this is to write a letter to your care team about how you want to be treated.

Having a plan and taking agency over your caregiving experience while you are strong enough and cogent enough to do so is one of the very important ways that you can manage hope.

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About the author

Dr. Elisa Everts is the founder of Evertree Hope Management and is a dynamic public speaker, author and trainer. Dr Everts is passionate about helping cancer patients and bereaved people in their quest to survive and live a full life during and after cancer and grief. She has the personal experience of surviving Stage IV cancer and the loss of many loved ones. She understands the challenges inherent in these experiences and the importance of cultivating hope through the stories we tell others, and even more importantly, to ourselves.

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2 thoughts on “Will Your Self-Esteem Survive Caregiving? How Having a Plan Can Help”

  1. This is such an excellent article and I urge people to read it and consider the questions. It takes me back to when my husband was in the hospice and people wanted to visit. He’d told me absolutely not. He didn’t want to be seen as he was and I had to be the gatekeeper. We lost one friend over this, but I knew Brian’s wishes and I honoured them. Consider these questions carefully if you are about to become a caregiver, and for yourself should you need caregiving. 🙏

    1. Thank you so much for this comment, Carol. We really need to consider the patient to have a kind of sovereignty that we must respect, don’t we. People don’t just get to decide that they know better than the patient what is “best” for them. And unfortunately, so much of the time people aren’t really even stopping to consider what is best for the patient. They are really doing what is best for themselves without considering the possible adverse or undesirable effects to the patient. If we could educate people more about what it’s like to be in that hotseat, I think we could improve the quality of people’s lives. Thank you for sharing from your experience!

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Elisa Everts, phd

Speaker | Author | Educator

Finding Hope in Cancer & Grief

Elisa Everts, phd

Speaker | Author | Educator

Finding Hope in Cancer & Grief

I speak to medical professionals and patients, helping them provide hope when there seems to be none. If you or your organization need someone to help process the difficult topics of cancer and grief, let's set up a complimentary call, 703-656-6691, ee@elisaeverts.com.

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