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Shedding Tears for the Patient, and for the Care Partners

Shedding Tears for the Patient, and for the Care Partners
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Published on May 18, 2021

‘The Father’ Reminds Us to Take Care of the Care Partners

It has been a very long time since a movie brought me to tears. Honestly, I'd never cried as torrentially as I did recently watching the last few minutes of the Academy Award-winning performance of Anthony Hopkins in "The Father."  I knew going in that the story would not be a cheery one — he is an aging, charismatic man who has progressive dementia.

The movie takes us on his journey, through his eyes and through those of his grown daughter who is struggling to do the right thing but needs to go on with her life. I spent the first half of the film not knowing if what was happening was real or part of this father's hallucinations and warping memory. This was very disorienting but as it became clear that his reality was not aligned with true reality, it was all the more crushing.

So why am I sharing this thankfully temporary (but memorable) emotional upheaval? Because as painful as it was to watch this patient lose his mental and emotional grounding, I was deeply struck by how very painful and confusing the journey was for his care partner, his daughter. For many years I have been a care partner to — thank goodness — a patient/survivor who is grounded in reality. But I too have felt helpless along the way and have spent many hours listening to and supporting care partners who have had to face much more challenging situations than I as they care for partners, parents, or other loved ones who have lost their physical and/or mental stability.

Care partners must be strong, ever-present, and compassionate. We often set aside self-care in dedication to their ailing charge. With serious chronic illness, and very often with cancer, there is not usually a loss of mental capacity — rather, there is a loss of biological control. In both cases, the body harbors an enemy we cannot see and/or really control and that is painful for both the patient and those who want to help.

It was the loss of control and the helplessness on the part of both the patient and care partner that was the through-line that brought me to tears the other night. It reaffirmed for me that in trying situations like this, a skilled third party who understands that a journey through illness is a family affair is worth its weight in gold. Care partners need emotional support and guidance just as patients need medical treatment and emotional support.

When my husband Andrew was first diagnosed with CLL, I fell apart emotionally. I was paralyzed with fear of losing my best friend, fear for our two kids not having a Dad to grow up with and guide them, and frankly, fear of being left alone.

We lived far from family at the time of his diagnosis, which made the prospect of this scenario even worse. So, I got help. I consulted with a psychiatrist and started on some medication to ease my overall anxiety. Over the years, we’ve fine-tuned my medication, but I still take it for the same reason. Both Andrew and I went into counseling for a time, and it helped us formulate a move-forward plan for how to manage the medical ups and downs together, how to communicate as needed with our children and other loved ones, and how to support each other. Over the years, we have done what we call "30,000-mile check-ups" in counseling that help us keep our individual heads on straight and keep communication between us on track.

I am daily encouraged to see that through social media peer groups, virtual support groups facilitated by fantastic mental health and advocacy organizations, and many others, care partners are finding safe spaces to be vulnerable, seek solace and compassion, and get wise advice as their journey with an ailing loved one proceeds. But it starts with care partners acknowledging that we, too, have lost some control and need help.

If you have read this far, I am guessing that you may be struggling with a situation like mine. I’m not one to give unsolicited advice but I will make an exception here:

Don't be afraid or ashamed to ask for help or support. As a caregiver/care partner, you are no good to your loved one if you cannot function at your best — and you are human.  We all feel emotions deeply and have very individual hopes and fears. Acknowledge them, communicate them, and get the support you need to be there for your loved ones.

Seek advice and resources from the amazing plethora of organizations that exist to support cancer patients and their families. Many of them run support groups (which may be virtual for the time being) to connect both peer-to-peer and with trained counselors. You will find that you are not alone in your feelings, and often others farther along on the cancer journey can share insights and resources.

Communicate with those you love, including your loved one dealing with cancer. You both need each other’s support, and open communication will truly help along the way. Sometimes you will deal with different levels of openness and acknowledgment about what is happening — that's OK — as long as the dialogue is compassionate and honest.

As always, my heart is with all who are on this crazy path. We are in this together.

~Esther Schorr

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