BlogCoping with Illness

Caring for the Caregivers

This week, I caught the very tail end of the Monday night “breast cancer and social media” tweet chat (find more at #bcsm).   I had missed the main chat already, but I saw a snippet of conversation about the needs of caregivers.  I responded to that snippet and ended up in a lively discussion.  This post is the result of that discussion, and it will be the overview for several future posts, so I wanted to express my gratitude to @nursefriendly, @coachkiki @stales @talkabouthealth @mckennah and @ctsinclair for inspiring me.

Before I get into the main thoughts that I have, I want to clarify what I mean when I say caregiver.  When I think about the title “caregiver,” I think of anyone who dedicates a substantial portion of their routine activity to the care and support of someone who cannot fully meet their own needs.  Here are a few caregiver examples:

  • The partner of someone with cancer
  • The children of someone with Alzheimer’s
  • The parents of a someone with autism
  • The partner of someone with severe depression

Those examples only touch the surface of the many ways that people can be called on to assume additional responsibilities for the ones they love.  If the examples weren’t broad enough to cover your situation, feel free to add more in the comments.  I think it is important for us to raise awareness about how many people are asked to step into caregiver roles.  Caregivers are the foundation of health care in the family and in the larger health system.  That makes it critical to support them appropriately.  These roles have some substantial challenges included, and the better we understand that, the better we can support them.

Challenges Faced By Caregivers

When I think about caregivers, I think about three main categories of challenge: emotional, social and practical.  Let’s look at those in a bit more detail.

  1. Practical Challenges: Most people who assume a caregiver role already have other primary tasks going on in their lives.  They may be working, they may be raising children, they may have responsibilities for property, etc.  When a loved one becomes ill, none of those other roles go away.  In fact, if there is financial pressure on the family, some of those roles may increase in time commitment.  Depending on the nature of the illness, the caregiver may be responsible for coordinating physician visits, tests, treatments, physical therapy, medical equipment, and more.  All of those must be added to existing responsibilities.  Because of this, many caregivers report feeling stressed and exhausted.  They may face difficulties at work over the time they need to get to appointments.  There may be family conflict if children or spouses feel neglected in favor of the patient.
  2. Social Challenges:  Being a caregiver can be very isolating.  Your support system, even some close friends or family members, may feel intimidated or overwhelmed by your loved one’s illness.  They may not be certain how to best offer support, and so may back away.  Caregivers can face difficulties participating in social activities (we already covered the practical challenge of too many commitments and not enough time), and so may find that their circles move on without them.  Caregivers may also feel as though they are required to keep on their “happy face,” and so may not feel able to ask for the help that they need.
  3. Emotional Challenges: When someone you love receives a serious diagnosis, that can be nearly as overwhelming and frightening as receiving the diagnosis yourself.  Caregivers are called on to be “strong” for their loved one.  This can be difficult, since serious illness often includes anger, frustration, fear, pain, and other tough emotions.  It is difficult to create space for your loved one to have these feelings, and not believe that you also have the right to your own tough emotions.  But those emotions are real for caregivers as well.

Supporting Caregivers

One of the strongest agreements that came out of the #bcsm chat discussion was the understanding that it is nearly as important to provide support to caregivers as it is to provide support to patients.   As I mentioned earlier, this post is just intended as an overview, so I’ll be expanding on these ideas in future posts.  But, if you’ve been reading this post and recognizing that you know a caregiver (or are one), here are a few simple ways to share support.

  1. Make it normal:  Many caregivers don’t even recognize that their loved one’s illness creates needs for them as well.  Or they may feel as though their caregiver role means that they aren’t allowed to express their needs.  When you treat their needs as normal, that can make it easier for them to receive the support.
  2. Make room for the uncomfortable stuff:  It is terrifying to watch someone you love struggle with illness.  It’s also frustrating, unfair, sad, and potentially anger-inducing.  Many caregivers feel as though their difficult feelings are too much for others to handle.  For some tips on how to make that room, check out my post with tips for compassionate listening.
  3. Help share the load:  Maybe you have the ability to get the patient to an appointment, or you have time to stop by the house and fold a load of laundry.  Maybe you can drop off dinner, or take the kids to the park during a tough physical therapy session.  Caregivers often feel as though they are carrying the world (or their families) on their shoulders.  Just taking on a small task here or there can make a huge difference.
  4. Remind caregivers to do self-care:  Whether it’s spending an hour alone, getting a massage, going to therapy, or grabbing coffee with friends, caregivers often forget–or don’t feel able–to build their own self-care into the already overwhelming schedule.  If you are persistent with your invitations (and you find a way to help get their responsibilities met), you can help them create space for self-care.

I know that these are pretty rudimentary first steps, and I’m excited to get into more detail in future posts.  If you have experienced great support, or you wish that people knew one thing about helping caregivers, please share in the comments!

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4 comments

  1. Great post Dr Schutte! Is there are list somewhere of online resources for caregivers/family to access? Discussion forums, message boards, blogs ????

    1. Rachel,

      That is one of the questions that we were chewing on during the #bcsm chat last week. I don’t have a quick answer for you on that. Getting an answer is on my to-do list, because none of us in the chat were able to identify ready resources. I believe that hospice has some good caregiver resources, but I’m going to have to do my homework.

      Warmly,
      Ann

  2. The Cancer Support Community (former Wellness Community) has a section on their website devoted to Caregivers. Much of what they say is relevant beyond just cancer.

    Here’s a link to that section:
    http://www.cancersupportcommunity.org/mm/Caring/Caregiver-Support/default.aspx

    And here’s a link to an article on their site about maintaining your energy:
    http://www.cancersupportcommunity.org/mm/Caring/Caregiver-Support/Energy/default.aspx

    1. Liza,

      Thank you so much for sharing the resource! That’s exactly the type of thing that people have been asking about. I can’t wait to pass it along.

      Warmly,
      Ann

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