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Meet...CentralAB

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Take a moment to better get to know CentralAB and read about his journey of "Small Beginnings"...

Journey Of "Small Beginnings."


My first experience with cancer was as a young nursing student. My first patient was a woman with massive, fungating breast tumors. I found that tough to deal with. I retired from nursing. Even after;  my experience involved palliative care, and home care. My experience and training often included support of patients and family. There is lots for them to deal with during those “last days.”

Currently, I am looking after my wife who has cancer.  They call me the "Primary caregiver." This will be the fifth year of doing this. The last four years I have been in the role of primary caregiver.  Doctors say at times she is “terminal.”  But this is a much different scenario than all my days of nursing, and training.  My wife doesn’t seem like “my patient.”

My wife was a Social Worker all her life. She had two miracle children. She had her first diagnoses of “granuloma cell tumor” of the ovaries when she was quite young. They told her she would not be able to have children. My wife decided to pray for one boy, and one girl. She only had one ovary after the cancer surgery. Doctors were adamant she would “never have children.” In the ensuing years, my wife did have one boy and one girl! Her angel must have worked that one ovary overtime. Talk about  "answered prayer."

I have read letters of reference from her past employers, helping abused Moms and kids. What a sweet, strong, lovely lady she has been, to so many.

We met each other through online dating. After both of us had two previous marriages, we were thinking “never again,” before we met. We were both “ready for the right one.”  

The name of the site we met through is  “Our Time.”  Could that be coincidence? Was it by divine arrangement?
Its a site that caters more to people over age 50, so we met that qualification. At times, the tears will come with an over-whelming rush of what I felt that day when we met for the first time, in person. We corresponded for a few months. The time was set to meet at Edo’s; and as strange as it might sound; I first saw her from behind, and knew right away “she was the one.” (yes, we have joked about that). I have said more than once: "you are what I advertised for."

All I know is that as I saw her from behind, this major “wave” over-powered me for a moment. I already knew before I saw her sweet smile that I would become hooked. I did not know that “love at first sight” was actually a real thing, until it happened to me.  Our first date was almost 8 hours.  

Because of my training, I could tell when we met that she had been sick in the recent past. None of that mattered. We were in love. I thought that kind of “power” or “rush” was only available to people half our age!  I have never before or since experienced such an emotional wave, that swept me off my feet like that.  We had one good year. The worst fear, had returned.

The cancer returned about a year after we met. It has been very trying. She became ill. Its been almost 5 years since I could work. I chose to stay home and look after her. Support from family or friends have dwindled over the years. We started living together, out of necessity. She was struggling to make do on her own. She had trouble driving. About two years ago, in the summer, she was so ill she could not get out of bed. I got on my knees one day and said will you marry me? I love you,” (then some tears). “I want you to know that true love doesn’t stop because of cancer.” 

She was so shocked that someone would want to marry her “like this,” and I said “thats why its true love.”  A short while later, we had a beautiful civil ceremony. At first we were going to try to do it in the park across the street. They have a nice little gazebo there.  She was not able to do that, so we went to plan B. We started setting up to have the ceremony in our living room. But she was too sick to even do that so we got married in bed! (modern-day John & Yoko?).

The cancer has spread to other areas, including her liver.  The one thing I would want everyone to know about cancer, is that we can continue living, even while we are dying. When the doctor says “terminal” you don’t have to let that define you.  Cancer, of course, affects us all; but it doesn’t get to tell us how to live, not even how to die. Sometimes life can have more meaning with cancer. The disease process has blinded her. But we are closer now than ever. We even share laughter and fun if I help “steer her” when she needs to walk somewhere. “Where did you get your license?” “From you.”

Don’t we all have “borrowed time?”  
My wife and I see all times that we share together as “precious,”  “sacred,” even. People do need to realize that when a cancer patient seems “confused,” that they often are not. Meds and/or the disease process will often cause trouble with expressive verbal. Problems with expressing does not mean they cannot understand what is being said. The spoken verbal is often understood by the person you are speaking to. Regardless of their ability for expression. 

I would love for more people to know this, and to not write them off as “confused.”  Whenever I come in the room that my wife is in, I often give her a play by play on what I have been doing.  I know she does understand what I say. But inability to use verbal expression is where our many little “islands of praise” locate.  We still communicate well.
Some would say that the primary caregiver has it rougher than even the one who is sick.  The caregiver has to be on duty, 24/7. The "patient" gets to sleep when they want. 

Another thing that people need to realize more is how very hard it is for the caregiver. Especially when it drags into years. I once had someone criticize me for "complaining." They explained how "it would come "naturally" for me." I wondered how they knew this so well since they have never had to do it themselves. 

Spending six figures worth of what was going to be retirement money to keep things going is one thing. There are others. Imagine not being able to go anywhere for more than an hour or ninety minutes. Ever. As in weeks. Or months. Or years. But none of that is a complaint. People have to know. Health Care powers that be and politicians could do much more;. and still save the healthcare system a lot of money.
There are  “small things” in life that I call “beginnings” which have been helping in some big ways. There is even a verse which says “despise not the day of small beginnings…” ( Zech 4:10, NLT)  It is not a concept. It is a personal experience with small beginnings, in the little things of ordinary life.

Personal experience informs that there is huge potential in the ordinary things.  The smallest detail is not missed, or wasted, when it comes to the “grand scheme.” Each detail grows into a beginning. A refreshing. Or a reminder. Or sometimes a much needed kick in the seat!  It does take a lot of effort to be primary caregiver. But it is also true that some of these efforts, usually the smallest ones, do pay big dividends. Here are some of the things that have helped:

1) “there is always a little light”
2) sleep when the “patient” sleeps
3) take care of yourself first sometimes
4) find someone to talk about things with

As the caregiver, there are no main supporters available to me for the moment. Each year grows worse in that department. But a strong faith keeps me grounded. A good friend in another province helps. There is no one local to support me right now. We do have a hired caregiver who comes over when we can afford it.  

 I have some activities and hobbies that keep me balanced.  I am becoming an accomplished photographer. I like to hike and explore. I enjoy web design with Word Press. I have cycled 2500 miles a few years ago. I fix my own cars. I enjoy wood working. I was in nursing for 14 years. I welded and drove semi-trucks. I had my own drywall business.
Once I became a primary caregiver; these activities are much less. It is my only regret. It would be nice to have a little more time for some of these things. Walking in the wilderness is one of my major therapies. Its hard when I cannot do that. Could it be that this is why these are all my "small beginnings?" How big will they get?

Being a member of CancerConnection.ca has been a great help. But it’s not the same as someone here in person. People who have been or are in the same place as me reach out to connect. Those connections are more "small beginnings." It would be a big loss to not have "a day of small beginnings." Strange as it may sound, my wife and I have grown closer through this difficult journey. Our very own "day of small beginnings." My wife is such a sweet lady; I would do all this again for her.

CancerConnection.ca has been a huge help. I have recently connected with someone in the next province who seems to resonate well with me. Another "small beginning." All such "small beginnings are huge in the life of a caregiver. I wish I knew about CC.a a few years ago! Home care nurses should have a small brochure to share with patients and caregivers. It can be a very important connection for people to make.
Years ago now, my wife wrote in our "communication book," that "I have never felt so loved, so heard, so understood in my life. And it brings me such joy and peace."

A couple of pages later, I wrote her the following: "I will always be here for you. I will hold your Light up for you; if you get too tired to hold it yourself. I love you more each day..."

This brings me to the last point I'd like to make. It is possible to go on the "cancer journey" and grow closer to one another. All it takes is to make your own list of  "small beginnings," and to share them with each other. Say what you mean, and mean what you say to your loved ones.


Thank you for sharing your experience as a caregiver




Comments

CentralAB
I've been reading your posts for quite some time and am so glad the story of your wife's cancer, your experience as a caregiver, and your lives together is written here in one beautiful synopsis. Though we know nothing is static and your story continues to evolve as your wife's cancer progresses.
My heart is with you both. 
  • Posted Tue 18 Feb 2020 03:20 PM EST
Jlo
Thank you for such an inspiring message.  Words cannot express how I feel after reading your message.  Your wife is so lucky to have you in her life.  You are an amazing caregiver. Best wishes.  
joan
  • Posted Wed 12 Feb 2020 02:31 PM EST
Thank you for sharing CentralAB‍ and for your presence in this community
Lianne
  • Posted Tue 11 Feb 2020 05:34 PM EST
What an insightful and powerful message.  It's very inspiring to hear your story.  I wish you all the best.

Catherine
  • Posted Tue 11 Feb 2020 04:02 PM EST
CentralAB‍  Well said! Such a touching story that continues. If only all partners were as loving, kind, patient, and giving as you are. Thank you for being such an exceptional human being.
  • Posted Mon 10 Feb 2020 08:26 PM EST

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