“Rarely can a response make something better.  What makes something better is connection.”  —Brené Brown from her animated YouTube video, “On Empathy”

You may have never thought of yourself as a caregiver, but there’s a good chance you provide caregiving if you support a Cushing’s patient in any way.  One of the challenges for society in supporting caregivers is that caregivers rarely self-identify.  They feel they are just doing what is necessary.  But caregivers need support.  

Being a caregiver can be very rewarding.  It can also come with some profound challenges.  In this article I am going to outline some of these challenges and strategies for self- care.  

I write this article from two perspectives.  The first is as a Cushing’s survivor.  The second is as a mental health professional who has worked extensively with veterans and their caregivers; I lead groups and retreats and speak publically at caregiver symposiums for those caring for our wounded, ill and injured veterans.   Veterans, like us Cushing’s patients, experience chronic pain, memory loss, trauma symptoms, poor sleep, depressed and anxious mood, irritability, and sometimes even suicidal thoughts.  While the origin of their symptoms is drastically different, the road to recovery has some striking similarities. Throughout the journey, we all need a support system, veterans and Cushing’s patients alike.  

Veteran caregivers, much like patient caregivers, can be frustrated with the system and confused by the complexity of navigating numerous health care providers and diagnoses.  Many caregivers suffer from compassion fatigue, symptoms of depression, confusion, frustration, and a profound sense of powerlessness.  As I have written in the past, an impactful support system is most helpful when it is comprised of those we love and trust who bring us comfort; they see and hear us accurately and still believe in us.   That caring, however, comes at a cost.  This article is for those who care for Cushing’s patients.  

Rarely does a marriage start out with the intention of caregiving.  Sure, we realize on some level that maybe when we are old – very, very old – we will need to care for one another.   Likewise, we never plan to have our child or any of our friends become sick.    Those who support Cushing’s patients and survivors in their journeys toward diagnosis, treatment, and healing know that the road is not paved.  In fact, it is often filled with switch backs, narrow lanes, apparent dead ends, forks in the road, and lots of night driving.  For caregivers, this road can be very lonely and confusing. It is filled with an overwhelming sense of powerlessness and fraught with frustration and uncertainty.

The emotional and physical toll of caregiving is challenging to quantify.  Research has begun to do so for certain populations.  While we do not have hard statistics on the impact of caregiving for Cushing’s patients, we can fairly easily extrapolate from existing data that there is an impact.  The impact may be relational, physical, spiritual, and mental.  As a caregiver, you may find yourself feeling a lack of energy or interest in doing things that used to give you pleasure.  You may also feel sad or guilty, as though you are somehow failing your loved one by not doing enough.  Alternately, a sense of disconnection may result, and with it, guilt for feeling disconnected.  Resentment can arise, followed by guilt for having resentment.  Depending upon the relationship, various losses may be incurred.  If the relationship is a partnership, intimacy is likely to be compromised.  This can result in a multitude of confusing feelings for both parties. At times, relationships have not survived the journey.   What can be done?

1.  Talk to your loved one about your feelings.  It is a misnomer that talking about feelings will burden your loved one.  The alternative is a gradual numbing and/or resentment in the relationship.  Chronic numbing can result in the death of that relationship.  Talking, no matter how challenging, creates connection.  For assistance on how to do this effectively, watch Brene Brown’s 3 minute YouTube video “On Empathy” at youtu.be/1Evwgu369Jw.
2. Remain nonjudgmental of both your emotional experience of this process and your loved one’s experience.   The layer of self-judgment or judgment of the other is a waste of both energy and time.  Don’t do either.  Instead, do #3.
3. Make your loved one an expert in their experience.  “I don’t know your experience.  Please tell me.  How can I support?  What do you need?  Here is my experience as your caretaker.”  
4. Have realistic expectations of yourself and your loved one.  You are only one person.  Remember that you don’t have to fix it, just listen.
5. Talk to your doctor if you feel a growing sense of depressed or sad mood.  A referral to a counselor may assist in managing the feelings that come up.  Guilt and resentment are normal.  Changes in eating or drinking alcohol may occur.  
6. Remember daily self- care, no matter how little is essential to keeping resentment at bay, i.e. eat healthy, exercise, take time for yourself, take a bath, take a class, pray, meditate.
7. Remember to engage in your passionate pursuits when possible.  These are things that give you a sense of purpose and meaning.  They also give you joy and a way to pass time. Examples include but certainly are not limited to dancing, painting, working on the car, working out, golfing, bowling, fishing, quilting, cooking, baking, and woodworking.
8. Connect with others.  Have coffee with friends.  Join a support group in person or on line with other caregivers.  You do not have to do this alone.  As Brené Brown says, “Share with people who have earned the right to hear your story.”
9. Stay connected with the CSRF network, and seek out credible and credentialed scientific information.  Learn all you can about Cushing’s through legitimate means.  (I don’t recommend Google)
10. Have hope.  This is a process, not an event.  There is healing taking place. In the meantime, your job is to take care of yourself first.  This is the best gift you can give your family member or loved one and yourself.  

If you want more information, please feel free to read earlier articles on the CSRF website to include:

* “Coping with an Unknown Outcome: Ambiguous Loss”

* “Coping with Embitterment to Improve Quality of Life”

* “Sex and Cushing’s”

* “Managing Stress Through Cushing’s”

While these were created for Cushing’s patients, the information they provide will benefit caregivers as well.  The “Managing Stress Through Cushing’s” article has key ingredients to assist anyone in improving their stress management skills.   Also, the webinar on Quality of Life on the CSRF website may be useful as well. 

On the flip side, we know that those caring for others can experience a profound sense of meaning and purpose, that caregiving can actually lengthen life span.  Because we are hard wired to attach to one another, to need to be in close proximity to one another and have purpose and meaning in life, caregiving can fulfill these needs.  It seems that it is not the caregiving alone that is stressful but the meaning we give it that can be either stress-producing or life-enhancing.  Kelly McGonigal discusses this in her TED talk, “How to make stress your friend”, at youtu.be/RcGyVTAoXEU.  I encourage everyone interested in resilience to watch this 15 minute video.

In sum, caregiving can be both rewarding and challenging.  The concept of self-identifying as a caregiver can also be important, as it validates the inherent struggles and unique challenges therein and provides an avenue to better understand one’s experience.  This understanding can improve conscious coping to prevent compassion fatigue and maintain robust self-care.   We humans will always heal better in the presence of another.  So please continue to care for yourself, daily, in little ways.  Be kind to yourself, be self-compassionate, be creative, and be forgiving.  Thank you for all you do every day to support the healing of your loved one.  

“To keep a lamp burning, we have to keep putting oil in it.”  -Mother Theresa

Editor’s Note: The graphic included with this article was shared with permission from the National Alliance for Caregiving (NAC).  While caregivers of Cushing’s patients have a very different experience than caregivers of some other diseases, these statistics hold true for everyone.  

NAC organized with Global Genes in September of 2017 to run a research study collecting data about rare disease caregivers.  Within six months they had produced an impressive 90 page document titled Rare Disease Caregiving in America after receiving responses from over 1400 rare disease patient caregivers.  You can find this document plus the questionnaire they used and the full list of rare diseases that were represented at caregiving.org/rare.