How I Became a Caregiver.. The Story of my Mom

[caption id="attachment_18" align="alignleft" width="292"] Mom and Dad six months before her death[/caption]

“Mom is at Johns Hopkins and they think she has pancreatic cancer.”

My stomach dropped.  The call was from my sister and it came while I was at a conference across the country in San Diego.  How could that be true?  She was fine when I left just two days ago.  And what was pancreatic cancer?  How serious was it?  Lots of people survived cancer – maybe this wasn’t one of the bad types.

I quickly started searching the web for information on pancreatic cancer and what I found was not promising.   With a five year survival rate of just 5%, it was one of the most deadly cancers.  Most people were dead within three months of a diagnosis.  Our best hope at this point was that the doctors were wrong and it wasn’t pancreatic.

When I was finally back East and able to walk into her room, I found my usually vibrant and active mother prone on the bed and the color of a pumpkin.  The tumor was cutting off her liver and not allowing it to process the bile, thus the orange color.  By now, they had definitively diagnosed her with pancreatic cancer and had scheduled her for a Whipple procedure.  A Whipple procedure is where surgeons remove the pancreas as well as the upper small intestine and part of the stomach in the hope of removing the entire cancer and if not, at least staving off the progression of the disease for a bit.

Unfortunately when they went in to complete the Whipple the surgeons realized her liver was compromised with cancer as well and so they aborted the Whipple in favor of removing the half of the liver that was most covered with cancer.   The liver is a remarkable organ in that it can regenerate so even removing half of it, the liver will eventually regenerate and grow back to its original size.  The goal was to wait until the liver at least partially regenerated and then complete the Whipple when her body was better able to handle the stress.

So four months later she was back at Johns Hopkins for the Whipple.  In the meantime, she lived her life as normal.  She may have been a bit more tired or worried, but for the most part it was hard to believe that this healthy looking woman who was busy volunteering and loving her grandchildren had cancer ravaging her body.

The Whipple is a highly invasive and dangerous surgery and my mother did not recover well from it.   She did not wake from the surgery for four days and was in intensive care for nearly a week.   On a Sunday afternoon after the surgery, my Dad called.  “Bri, I think you should come up today if you want to say goodbye.   I had the priest come and do Last Rites – I don’t think she is going to make it.”  He sounded calm but as if he was working hard to stay calm for our benefit.   Resigned to the fact that he was going to lose his wife.  That life as he knew it was about to change.

She didn’t die.

The next day she opened her eyes and while the breathing tube was still in she was unable to talk, she began to communicate with us via eye and arm gestures.  I made a board with the alphabet on it so she could point out what she was trying to tell us.  Even though she was weak and it was a miracle she was alive, her biggest concern was the time her family was “wasting” at the hospital being with her.  At one point, she struggled for several minutes to complete a sentence – she wanted to know how the nurse that was caring for her was doing as she was not feeling well the day before.

That was my Mom – she was always concerned more about the people around her more than herself.

I brought her home to my house and she slowly recovered.   It took three months but eventually she was able to go home to her own house.   The time she spent with us was hard at times.  It wasn’t easy to take care of my regular family duties and my full-time job on top of her medical needs.  She had open wounds that needed to be cleaned and drained and because she had MRSA, it involved surgical scrubbing before and after and using disposable gloves.

It was also funny and heartwarming.  She was on some powerful painkillers that caused hallucinations.   Perhaps its wrong to laugh but my goodness, it was hilarious to see her trying to kiss my one of my children who were in reality not in the room at all.  One time she kept insisting that she wanted something to “put on her stomach”.  I tried pillows, blankets and even a stuffed animal thinking that the stitches from her wound were causing her pain.   “No…. I need something on my stomach.”  Confused and out of options I finally figured out that she was hungry.  The words just didn’t come out right when the drugs interfered.

My daughter slept on her floor so she could be closer to her.  My mother helped her with her homework while they snuggled in the evenings.   My sons checked in with her each day when they came home from school.  It was a good time and I missed her when she went home.

Life continued.  She still had cancer but I think as a family we tried to ignore the ugly black cloud that was always in the back of our minds.   Each time we celebrated a milestone it was bittersweet.  We were glad she was there to see it but recognized that it may be the last time.  In particular I remember one Halloween.   It was a fun day with laughter and love.  The kids dressed up and canvassed my sister’s neighborhood for candy.   My Mom and a few others stayed back to hand out candy and then we all gathered for a comforting autumn meal.   The smaller kids crawled on her lap and at one point she looked like she had four pairs of arms and legs with the coverage they were providing.  She purred with contentment.

It was days like this that were both the best and worst.  What should have been simply a great day with family, cut deep with the vinegar that it may be the last time that we experienced a Halloween with her.

My Mom lived three and half years after her diagnosis.  I am so glad for the bonus time we gained but it was also painful at times knowing that we were on borrowed time.  Despite our family being outspoken and honest and forthright with one another, we still did not discuss many of the things that are difficult when living with someone with a terminal illness.    How do you turn to someone you love dearly and casually ask, “so have you thought about how you want to be buried?”

This blog is to help others through this path.  Hopefully the things that I and others have experienced will help you on your journey.  Its not an easy one but there can be happiness and love and yes….. even some good things that come out of the experience of moving towards death with a loved one.