A Caregivers Story

This is my last post for 2012 it has been a while since I have blogged on my site, again cancer walked into my life and my focus had to be on the real life walk as a caregiver who was helping a love one battle cancer.  My husband lost that battle on November 4, 2012.   I started this site because I found myself burying relative after relative from the disease of cancer and feeling like those cancers were always found at the end stage of their cancers.  My husband cancer was no different he went to the doctor well over a year before he was diagnosed with end stage gastric neoplasm in an emergency room.   They gave him colon and prostate testing determined to find cancers he did not have when a blood test would have given them the actual cancer he did have.  He was diagnosed on June 26, 2012 and died only a few months later.   He tried two different chemo treatments the first so toxic he had to be hospitalized the second he managed to tolerate well with no hair loss or side effects.  Given his prognosis I ask myself why did he do chemo and the answer is even when we are given the options we will do what it take to live.  As a caregiver my goal was to stand behind his decision and his right to fight for his life and I am not alone.

More than 65 million people, 29% of the U. S. population, provide care for a chronically ill, disabled or aged family member or find during any given year and spend an average of 20 hours per week providing care for their loved one. The value of the services family caregivers provide for “free,” when caring for older adults, is estimated $375 billion a year.  That is almost twice as much as is actually spent on homecare and nursing home service combined (158 billion).

And to us the value is priceless, in the end for me caring for him left me whole instead of my heart broken in a thousand pieces.  If ever there was a time for a person to have a love one there by your side cancer would be the disease.  Family member’s visits, helping with taking their love ones to appointment, advocating, visiting as much as possible making every day count is what is important.  Cancer is not a kind disease; chemo in its battle to save your life can take away as much as it gives.  Understanding medication, nutritional needs and the emotional toll on the patient (family member) also for you is still another challenge.   

To say this was easy would be an understatement because in those month’s our goal was to extend our love one’s life but at the same time we are given the opportunity to share last moments together that can never be forgotten.  I remember thinking to myself this is not a movie where everything is oh so perfect in spite of the knowledge I was going to lose my husband and best friend my thoughts was how am I going  to do this.    Anger is part of the course for both of us why him?  Why me?  How is our family going to take the news? Why did the doctors take so long to find the cancer?  Then you go about the job of living with cancer which consists of frequent clinic visits, chemo, blood drawings , medication, telling family, friends and tears.

There is no true moment when you may know when they have had enough or they have accepted that they no longer want to continue chemo or any of their treatments but they know.  My husband missed his chemo treatment because of Sandy but the last time he had chemo he was good he didn’t need a shot to boost his immune system.  But he told me even before he was not taking any more chemo he was tired but he was reschedule for a chemo appointment anyway.  He didn’t make it he went to the emergency room because he was not feeling well.  When I was getting him ready to go to the doctor it was like he legs give way I remember on the way to the hospital him telling me he was not coming back home.  I stayed with him overnight for the last three days he spent in the hospital going home to change clothes little by little the body shuts down and you have to make a decision about quality of life versus being hooked up to machines because they will keep doing what they want until you say stop. 

Most important job for the caregiver is to listen, relative usually tell us what they want whether we choose to listen or not. During my husband last stay in the hospital the doctors kept trying to get him to sign D&R or paper to make me responsible for making medical decisions if he could not, he never signs them but as his legal wife I still had the right to make those decisions.   My husband told me months ago if his heart stopped don’t bring him back or keep him hooked to machines.   He told me to go home that last day he knew I needed a little time out from the hospital, I told myself I was not going to stay that night but I was dressed waiting for my son to take me back to the hospital he had just left after visiting his father with his brothers and sister.

The phone rang that night and the doctor was on the phone they had went to my husband room and he was non-responsive they were working on him now but it did not look good. I called all of the family and raced to the hospital when we got there he was hooked to a respirator.  I thought he had died but he waited for me, the doctor stated he was out too long, cancer was too advanced no matter what he was not going to survive his cancer and most likely the blood clot he had on his liver had moved and caused a stroke leaving him brain dead.   My husband in the end left here surrounded by love we prayed, we cried, we touched his warm hand and spoke to him and most of all we let him go the way he wanted to leave this earth as only caregivers can do because we listen.and we love to the end. 

http://www.thefamilycaregiver.org/index.cfm

Caregiving in the United States;
National Alliance for Caregiving in collaboration with AARP;obtained December 2012

Evercare Survey of the Economic Downturn and Its Impact on Family Caregiving;
National Alliance for Caregiving and Evercare obtained December 2012

SHORTAGE OF LIFE SAVING CANCER DRUGS

There is a shortage of life saving cancer drugs that could save lives that are not available because those drugs are now less expensive and are there’s no profit motive for companies to produce these generic drugs that sell for very little cost.   These drugs are not being produced because they don’t produce a large profit to manufacturer who can profit better when that drug is at its greatest demand.  In the meantime children with cancer are now facing a Methotrexate shortage in a few short weeks. Methotrexate is the primary treatment drug for acute lymphoblastic leukemia. In November, one of the four U.S. manufacturers of Methotrexate was shut down because of quality concerns, this move emptied pharmacy shelves, the FDA say they have given the green light for companies that produce Methotrexate to ramp up production.  There are still 200 hundred shortages of life saving drugs the FDA needs to look at a long term solution so we never have this problem again.  

Happy New Year From Muriel Lights' 2012

A new year and more to say about the battle to reduce cancer rates. Prevention will always be key for most of us, not smoking, eating nutritional foods and watching our weight promotes a heather you. For some of us just having family member with cancer may put us more at risk.  The best course in this instance is to talk with your primary physician and have annual check- ups for colon,  breast, cervical  and  prostrate
cancer test. Pre- cancerous cells can be removed when found early be aware of your status and your body, never be afraid to ask questions or request a test if you feel your doctor is not paying attention to your symptoms..