Caregiver Survivor

To: American Cancer Society

The following is an essay I wrote to the treatment center where my husband was treated for pancreatic cancer.  I am of the belief there is a gap in our follow-up care for surviving caregivers.  We are left scarred by the cancer process and unfortunately, have to re-build a life after our loved one has passed.  It is my hope that this letter provides some insight to what I found missing during my -rebuilding.

CANCER CHANGED ME……  and I wasn’t the patient…. I’m the survivor left behind.

It’s now been 10 months since my husband Phil passed away from pancreatic cancer where he was treated at Hoag Cancer Center in Newport Beach, CA.  It’s been a tough road, but I continue to put one foot forward and try to move on.   I’d thought I’d write and share some thoughts with you that I’ve had through this recovery process and the reason for my letter. 

When the diagnosis came down, our world was turned upside down.  Never did we expect that the diagnosis of his symptoms would be a fatal blow.  Given the family history, we thought there may be a chance of something there, but always thought we’d have a chance to come out on the winning side of things.  Going through the process of finding treatment was an eye opener for us.  After several discussions, with what I would call less than compassionate doctors and treatment centers, I was committed in finding a place where the humanity of the patient was a driving force and that personal dignity and caring empathy was forefront in the treatment process.  We could not have asked for more from the team at Hoag.  From the doctor and her team, to all the nurses at the treatment center, they embraced Phil and me from the beginning.  For that, I will be forever thankful.  I obviously wish the outcome had been different; but recognize that the odds were stacked against us from the beginning. So now we come to the reason for this letter…  I’ve come to believe there is gap in our healthcare system, at or prior to death of someone that has been deemed “terminally ill”, for the surviving partner/spouse.  

When the end came so suddenly, I was crushed to say the least.  Maybe more than other patients, the upheaval in our life at the time, played a part in this.  Between selling our home of 20 plus years, work changes, Phil’s turn for the worse and passing and shortly thereafter our family pet passing, life was pretty upside down.  But, one of the final blows in the process for me was the loss of all the “Hoag family” from my life.  I felt, and continue to do so, a keen sense of loss and abandonment after his passing.

Nothing can adequately prepare a family for the news of a cancer or chronic disease diagnosis, just as nothing can erase the pain that is caused by that loss.  Together, the loss of the Hoag team from my life coupled with the loss of Phil, was almost too much to take.   The medical and support team at Hoag not only treated Phil, they became my support group too; and I relied on them to understand what was going on with me as well as Phil.  When someone is diagnosed with a chronic/life threatening illness, their family and friends become part of the background support and the people working to get them through the illness becomes the primary support.  The Hoag team involved gave me my support throughout this process and became a source of solace during this time.  I have started telling people that it wasn’t just Phil that was treated, I was too.  Two times a week, 8 hours per day I was there along with him, in the room—watching the love of my life fade away.  Always trying to encourage, stick it out, hang in there and make it better however I could—for 18 months.  The reality of the daily routines of care giving- from meal preparation, medication oversite to management of treatment(s) and their side effects, specialist appointments, coupled with trying to maintain a “normal” life- i.e. family, job, are a lot to deal with.  The involvement of the staff played a huge part in my emotional balance during that time.   I had the “burden” of the care part, but the treatment process was as much my life as it was his. Tons of information regarding caregiver burnout is available and the staff was always on top of monitoring my state of mind during the treatment process.   Family members too have helped/understand, but they just don’t have knowledge, capability or experience of understanding the depth and intensity of how this process effects/changes a person (unless they have been there themselves). This is not to take away from their own pain and feelings of loss that they are going through and/or the support they did provide to me.  I will always be grateful for all my family and friends for the support they gave to both of us; allowing us to cry, talk it out and vent as needed.  Because their lives could come and go in and out of this situation, and they could return to their daily life, the true impact of how it feels to lose the support of the care team was limited.  But the staff surrounding Phil and I knew…every step of the way.   When he was released from the hospital for hospice care, I felt this great sense of loss knowing that this “routine” of care, and selfishly, my support was being ripped away as well.  Not only was I losing my husband, I was losing everyone that knew me and what I’d been through.  I even went so far as to ask the Hoag team “what do I do now” when Phil was being sent home?  I immediately felt the impact of them being out of my life.

While most of us don’t want to discuss the end of life while in treatment and certainly keep hoping that things will work out, the lack of what I would call “transition” for the surviving person is sorely lacking.  I’m not speaking about grief here.   There are many sources for the immediate grief and the handling of all those intense feelings once losing a loved one.  Grief, in my opinion, is about the person we lose, not about the survivor.  There are also many resources for those going through the treatment process and all the pitfalls/warning signs of caregiver burnout.   This is about me!  What I am referring to is the “gap” where treatment has ended; perhaps the person is on hospice or has passed; and the surviving partner is left to try and deal with making their life “normal” again.  The emotional bonds I had developed with the Hoag team for over 18 months also died the day Phil did.  I was left abandoned to figure out how to take care of me without this team on which I had also so sorely depended on throughout this process.   

I see a need for those that have gone through something like what we did to have some kind of transition group to help the caregiver/survivor.  Again, not a grief group, as much as a setting where they can talk about how they are and how do they go forward without what has become their “family” of support—the doctors, nurses and people at the treatment center(s).  A group that would include the survivor, nursing staff (maybe doctor), familiar with the patient and survivor and mental health professional that could facilitate the transition back to “normal” life without having this team to lean on any longer.  I have struggled making sense of purpose in life now and after 2 years of being so entrenched in Phil’s care; which during the process everything else didn’t matter.  Now, how do I make what we went through matter?  I’m assuming I’m not the only person that has felt this void.  Maybe some do not wish to voice this need because it appears selfish.  I too have felt guilty for thinking of myself and not of him for this.  To me this has been the missing piece to this awful process of re-building a life.  I didn’t want to lose my husband and I certainly didn’t want to have to face rebuilding a life without him, but here I am.   If I can be a voice that helps someone else get through this transition, then I’m honoring Phil and his memory and everything we did to get through this together.  

The focus in society right now seems to be on celebrating the people who make it through a cancer diagnosis/treatment - which is obviously amazing and rightly deserves celebration.  But I also want us to honor those of us that are survivors and made it through the treatment gauntlet - did the hard work of being there day in and out, hoped, prayed and are trying to come out the other side because it didn’t result in a remission.  These people are cancer victims too.  Their lives are forever scarred by the journey.  Time helps heal the immediate hurt and pain of losing your loved one, but I still don’t feel whole from losing my support base.  Maybe this is a selfish view of things, but I feel like Phil, while losing his battle, got to get some peace when he passed.  For me, as for other surviving care givers, we are left to rebuild a life that makes sense and has meaning again.  Cancer changes us too…forever- whether we are the patient or the caregiver.   I ask that consideration be given to adding this type of care to the overall program at the cancer center.  I believe that others could greatly benefit from this added care outlet.  As mentioned earlier, traditional grief counseling helped me focus on my loss of my husband and individual therapy has helped me focus on moving forward.  This “gap” and lack of closure I had with the support team at Hoag has been the one point of the entire experience that has left me feeling less than whole.    I welcome the opportunity to discuss this further if you deem plausible.  

 regiver Survivor