Cancer Caregiving

--The following blog post is Part 2 of a blog series written by Brenda Boitson, a 26 year-old widow, writer, and speaker who resides in Lancaster, Pennyslvania.  Her husband, Kevin, lost his battle to angiosarcoma at the age of 36 on October 28, 2008.  Brenda detailed their journey through his disease at http://www.theboitsons.info and now continues to blog about widowhood at http://www.crazywidow.info.  She advocates locally for sarcoma and grief awareness while working full time and attending school for business.   Read Part 1, posted last week. 

My husband became ill in June 2008 and within just two months he went from having a sore throat, to being on life support and having an emergency esophagectomy at Johns Hopkins.  Our life drastically changed, and that change included a sudden move from Lancaster, Pennsylvania to Baltimore, Md.  While Kevin was in full care of the Hopkins staff, I could not bring myself to leave his side.

I went on an indefinite leave of absence from my job in August 2008 to help care for my husband in the hospital.  Rather than the doctors looking through a cartful of his medical records, they came to me.  My memory became that of a computer-I was able to recollect dates, dosages, surgeries, tests, exams with intricate details.  Prior I could never remember my friends’ phone numbers, but somehow I was able to remember Kevin’s entire medical history at a moments notice if a Doctor asked.  This became my job while Kevin was in the hospital, besides being juice delivery gal, foot rubber, and medical coordinator to his care.

I fully trusted the staff at Hopkins to complete Kevin’s care, but I knew that any new nurses coming into his room would be overwhelmed by Kevin’s case.  The amount of medical history that was contained in his file would scare anyone, even a seasoned Doctor or Nurse.  It was easier for me to recollect his history to them, rather than have them search is out through the massive amount of files on his case.

Kevin was discharged after a 45 day straight stay, and I took care of giving him his meds, performing tube feedings, taking him to doctors’ appointments, chemotherapy sessions, and being his home nurse.  Instead of having a nursing agency stop in, we opted to have me complete most of his care, with them visiting intermittently to check on his condition.  Kevin was more comfortable with having me perform the procedures, since I had learned how to properly care for his esophagus ostomy bag changes, and in helping to clean him and his tube sites.

I was fortunate enough to grow up in a home where my mom is an LPN, father was an EMT, sister was an RN, and even my brother married an RN.  I knew much about the medical industry, but I myself was never a fan of blood, guts and gore.  Assuming the caretaker role was one that I never thought much about, I just began doing.  It was more of an autopilot position-one that I felt I had the immediate ability to do, without the skill or stomach to handle.  Somehow though, I was given the strength to care for him, and to complete some stomach turning tasks, without a second thought.

Caring for my husband was a way I could help.  He trusted me more than anyone else, and even while in the hospital, would shoo away the staff to have me complete some of his daily dressing items with the approval of the nurses.  Despite the head ostomy nurse’s assistance, it was only I who could position his ostomy bag to attach to his neck in a way that was both comfortable and able to uphold for more than 2 days.  You see, his esophagus was diverted out the side of his neck during the surgery, due to the fact that a previous test performed at another hospital had perforated his esophagus, and the cancer was closing in on the esophagus as well.

I enjoyed taking care of my husband, and knowing that it was a comfort to him by having me do it, gave me assurance.  It was, however, physically and emotionally draining.  Mornings came quickly, as Kevin was not able to sleep soundly in bed due to the feeding tube placement in his abdomen.  I would wake in the middle of the night, to feel him slip from the bed to his recliner, where he would attempt to get some rest.  He would wake me in the mornings to change his ostomy bag because he was drinking so much fluid due to being dehydrated, that the bag sealant would disintegrate.  While the fluids was merely for his taste enjoyment, and did not go into his system, it was a pleasure he could not be denied, one of few pleasures he was able to enjoy while being ill.

I chauffeured him around town because he was unable to drive to due to the high level of painkillers in his system to control the pain of the cancer eating away at his body.  When he passed, from a combination of the cancer, and a blood clot in his lung that was unable to be treated due the type of cancer (angiosarcoma attacks the blood vessels), I was left with no further caretaking duties.  A huge void filled my life not only from his death, but from spending every waking moment making sure he was ok.

He was ok in a different sense when he died, but I was no longer ok.  I was devastated and destroyed.  Widowhood was a role, that at my 24 years, I was unable to accept.  I spent months running from the pain, not knowing what to do without Kevin.  I found a new job in the New Year, and heavily blogged about my journey dealing day in and out with new emotions I had never felt before.  I felt a guilty relief at no longer having to care for his every need.

Now, two years later, I still fight daily with the loss of my husband.  Secondary losses were huge for me as well-losing the ability to have children with my husband, our dreams of moving to the shore and surf fishing daily, having a life where we would grow old with one another were all taken from me.  Those losses were nearly as painful as his death.

There are no clichéd responses or platitudes that solve the role of grief or widowhood.  We merely must learn to be real with one another, and the public to be real with us on the truth of our situation and loss.  No “I’m sorry” or “I understand” will solve this problem.  We learn to live with the grief, and it becomes intricately part of our lives whether accepted or not.

As a caretaker, as a widow, those are two roles which weight greatly at your soul.  There is much guilt in both, as you never feel as if the role is completed or finished to a suitable point.  There are no rewards for a caretaker, no blessings felt.  As widow, any chance of redemption is gone.

It is a lonely walk, but there are many that have walked these steps and opened doors for us.  Emotionally we may feel completely closed out from the world, but it is important to know that there are support groups, and many resources available in which we can connect.  As tough as it is in these roles, I try to reach out to other widows to walk with them on this lonely journey and to ease the pain.

In a heartbeat I would go back to taking care of Kevin every second of the day if it meant he would still be alive, but that would not be fair to him.  There was too much pain in his life, and there is a relief that he will no longer suffer.  That does not diminish the feelings I have about his loss, or offer me comfort, but it is something that can be said for his loss.  We walk this journey so alone, but I know that there are many others walking it with me.

--Brenda Boitson