Katie Brown

Where Did Everyone Go?

August 17th, 2014 - by Katie Brown

Where Did Everyone Go?

When people disappear (physically or emotionally) after a cancer diagnosis. 

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I have experienced being someone with cancer and being someone who cared for someone with a terminal cancer diagnosis and neither side is a cakewalk.  This weekend, at the LUNGevity HOPE Summit in Seattle, we talked a lot about survivorship and family relationships in the Caregivers session and I’ve decided that being the caregiver and managing those relationships can be stress-filled and sometimes heartbreaking.

When my dad was diagnosed with terminal lung cancer, I had hoped that my large family would have rallied around him.  Instead, some sent a get-well card now and then, made obligatory phone calls or sent along emails or news articles about whey grass juicers and Noni.  What would have helped was some actual concern about how he was, how I was, and if we needed any help.

Where were they for each chemotherapy treatment?  Where were they when we were on the side of the road and dad was so sick that I had to run to the other side of the car to hold up his head?  That happened more times than I could count. Where were they when his primary caregivers- my mom and myself- needed a break?  A phone call allowing us to vent, a gift card for a massage, or meals, or an in person visit would have been compassionate and very welcomed.

Being “too busy” to help out was not a valid excuse to use.  If you want to help you find a way. I was a wife, a mom to a young son, a full time college student and worked full time along with managing my dad’s medical care daily.  Because my mom was a limited English speaker, she needed me daily, physically and emotionally supporting them both.  I didn’t sleep for about 11 months. Being too far away to help was not a valid excuse either.  Phone calls, gift cards, a sympathetic note and words of support can always be sent via email.  They weren’t.

That was 12 years ago and I’ve gotten over that resentment- to some degree.  I know after my experience who I can count on and who I can’t.  Those that I can’t count on I’ve virtually cut out of my life.  But that’s not always possible for some people to do.

One of the caregivers talked about his frustration that siblings and family members were not helpful to his wife.  They were nowhere to be found. Not only did they not help her thru her cancer experience, they continued to rely on her to care for her elderly parents and came to her for advice and financial issues- not once asking her about her condition.

One patient talked about her recent 11-day stay in hospital.  Her family, friends and neighbors had been great in asking her caregiver if they needed anything and how they could help her, but when she was finally released from the hospital she came home to rotten food in the fridge and a front lawn that had died from not being watered.

Another caregiver talked about how his mother in law compared his wife’s terminal cancer to her chronic gastritis.  She wasn’t any help to her or her family and never asked details about her cancer.

One patient talked about how her husband had set up a chore list and meal train in hopes that her extended family and church family would pitch in.  After the first two weeks, no one volunteered to help her family during their most difficult time.

 

Have you experienced abandonment of family and friends after your cancer diagnosis?  What did you do about it? 

Do you have advice for those who are going through this now?

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3 Responses to “Where Did Everyone Go?”

  1. Tina says:

    Of my husbands family only the mother- herself not very well- kept
    In touch with my husband and me on a regular basis.
    There was no one visiting. There were two sisters a brother and the parents.
    No one came to visit us.
    The brother called sometimes.
    Mother called sometimes.
    Not a word from the others.. They apparantly used to be close.
    My husband was very sad about it and said : u cannot force what is not there.
    I must say that we lived in Spain and they lived in the Uk.
    It would have been easy for them to come though …
    I felt so deeply sorry for him.. He had been the one who had always gone out of his way to be present at special family days like weddings etc. he flew in from far away.
    But not even on his deathbed did anybody show up.
    So much for a caring family

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  3. Donna says:

    I agree with this and would like to add that it becomes even more complex when those who have done nothing to assist in any way have the audacity to question whether the primary caretaker is doing the job well enough. My mom moved away from her family to live closer to us so I never expected physical help necessarily but to get a call from my cousin four days prior to my mother’s death telling me I wasn’t abiding by my mother’s wishes was beyond insulting. Meanwhile she had been on two vacations the prior month so if she was really interested in helping or felt she wasn’t being well cared for she had the time and the resources. It was always just the two of us from the very beginning until the end. Everyone learns eventually because one day their life too will be turned upside down.