Saturday, January 1, 2011

This may be most difficult for me to write.  While I am unable to recall each particular event, it sums up my expereience dealing with mom and her struggle with cancer.  While she was the person with the disease, the hardest part was in lifestyle and friendship changes.  Being unable to work a job as my new job was a full time care giver with little experiece of this type.  Not able to be social in any means, very much a disconnect from my friends and much of the family.  I ceased going to social events, church, visiting my child, tobacco, alcohol, I became overwhelmed and out of energy.  Researching moms insurance, legal documents, arranging treatments to doctor's, cancer centers, tests, etc..not being able to sleep without one eye open.  Limited friends and family members from the medical profession stopped in to provide help and encouragement.  Other friends and family would occasionally stop by to visit socially... all took time, energy, and effort to get her beautified and somewhat socially exceptable.  The phone calls started, I began to feel frustrated at the repitition and unavailablity to be social.  Immediate family had jobs, seldom visited as this reminded them of experiences of both dad and sister passing from other forms of cancer.  After several month's, people became concerned about me and how I coped.  I didn't have a choice, others were unwilling to assist.  I was wore out.... lack of sleep, constant care.  I had no time to myself, made decisions to cease communication with some who never called or visited.  When someone would visit, they often needed my time, energy, or materials.  Then they went off to other places to have fun...never a volunteer to offer my time to sleep, run errands, or go to church. 

I have no issues with others who want\ like to have fun.  I had done so with them several times for many years.  Not all friends continue to follow us as we change as they have thier own path's in life. Doesn't mean I still missed them and felt horrible I was unable to partcipate or reciprocate my friendship.  My diet had begun to struggle as time was of the essence.  Began eating comfort foods and more unhealthy habits formed.  I wanted to make healthier choices, just didn't have time to prepare them or act on them.  Visiting the gym was out of the question!  What was enjoyable to me at this point was watching TV or reading a book.  I typically spent much time on the computer dealing with was no longer enjoyable for myself.  While supporters offered wisdom..."your doing a wonderful thing" and "mom is greatful for what your doing", I still felt isolated and very much alone.  Sitting with mom while doctors told her test results, holding her hand while fluid was drawn from her lungs, dealing with pharmacists so "I" was able to pick up med's and ask questions.  Fighting with medical personel so "I" could be informed as she was no longer able to make phone calls, office visits, write mail, etc...CHANGES HAVE GOT TO BE MADE IN OUR MEDICAL SYSTEM!!! 

Around Christmas of 2005, we visited the Cancer Center once again for chemotherapy.  Which meant I sat and watched as several patients sat in chairs as blood transfusions occured.  The odor, witnessing others in better and worse conditions than mom, nurses scattered across the room, financial counselor's wanted $$, etc...Well, on that particular day we payed a visit to the attending doctor who told us all treatments had been made and no progress.  We had run out of options and there was nothing else they could do.  Mom gave up at that very point, told me she wanted to go home and die!!  I'm like "you've got to fight to stay alive"!!!!!  No, she was exhausted, out of options doctors recommended, and in her mind.... ready to quit.  Well, HAPPY NEW YEAR!  Less than 2 month's later, she had passed, buried, and I was suddenly alone.  Nurses, suppliers came to retrieve thier supplies, pastors and coroner came and went. 

Suddenly and instanteously....I was alone.  Had no clue what to do with myself, time, energy.  I was depressed, lonely, and didn't feel good myself.  While I know this entry may be scattered, I'm also aware if I make editions it may never get out.  Thanks for your patience and understanding!


  1. Wow - I had no idea and glad you shared this. Sometimes it's harder on the living than it is on the ones going through treatment.

    My husband was my full-time caregiver through my cancer treatments in 2008 and I couldn't have done it without him being at my beck and call - for some reason God knew what He was doing when my husband was laid off 4 years earlier and he decided to just stay home with the kids - didn't know that meant "kids and mom too". I couldn't have done it without him - he was and still is my rock. The way that we had to go through everything - multiple doctors, hospitals, maddening fights with the insurance ... the waiting for DAYS for test results to wait to find out if the cancer was anywhere else was agonizing. So I agree - I want something to change but not sure what it is exactly - paying for it is only part of the problem.

    Right now my brother is full-time caregiver to my mom who has Parkinsons - she is pretty much frail and stuck in bed all the time. As I read your note, I think about him and I'm sure he has the exact same feelings of isolation but he seems ok with his "charge". Again, thanks for sharing. - Hilary

  2. This brought tears to my eyes Kyle. After the experience of just losing my Mom on November 20, I understand and relate to your feelings completely. It is hard being the caregiver and can be very lonely.It doesn't end after passing either as now we deal with financial and personal matters of our loved ones. Thank you for putting this out there and sharing information about cancer. It is a nasty disease.