[Originally written in March 2019]
I’ve always believed that the experiences one goes through over the course of their lifetime is for a reason. “Teachable moments.” We may not like them or understand them, but we still have to go through them. I think my believing this has truly helped me with all the twists and turns which have taken place in my life. Some people don’t understand it, can’t believe how I stay positive through tough times. For me it is simple, I have a God and I have faith and trust that He will help me when the going gets rough.
It goes without saying, then, this same truth applies to this circumstance… this journey through the “C” word.
Impact #1: I have truly had to learn how to navigate a world totally foreign to me. I’ve never been a technical person or one who understands the world of science, so although I’ve had to try to understand some of the things about Pseudomyxoma Peritonei and Appendix Cancer, I will never be an expert and I do not wish to learn about all the facets of this disease (I marvel at those folk who understand the various kinds and can speak with great knowledge about them and the various treatments). I should also note I should never use the word “never’ – because sometimes God will turn those words upside down on me.
What I have learned is everything I need to know about George and his disease. I am an observer. When George is in the hospital, I watch the nurses, I listen to the doctors and the nurses. Over the past five years, he’s been in the hospital for more than 80 days! For many of those, I’ve stayed with him day and night. I’ve also gone with him to countless doctor appointments – surgeons, oncologists, etc. I take notes. I ask questions. I am very well versed in his care to the point some people will ask if I’m a nurse. My answer is always, “I don’t care how much knowledge God gives me and makes me learn regarding George’s care, I DO NOT want to be a nurse.” It doesn’t mean that somehow God won’t use what I’ve learned somewhere else down the road. He is not done using me yet!
Impact #2: Between caregiving first for Etta (from 2006-2016) and George (from 2014 to current), the ability to plan for anything has been difficult. It’s been thirteen years of trying to make plans, hoping that they work out. Nothing could be done impromptu when Mom was alive as we always had to make sure it worked out in Rosemary’s calendar. When George was diagnosed and I had double duty for two years, my brain was on high alert 24/7 (and coupled with that was the fact I was working 30 hours a week). I used my vacation time to stay with George for his multiple overnighters. Since leaving my job in April 2017, we had hoped to be able to do spur of the moment things such as a weekend away. However, this never came to fruition as George’s health deteriorated. In the past 10 months between chemotherapy and wound issues and now having to administer TPN and clean a gnarly wound every day, getting away is impossible. It seems every time I make plans to be away for more than half a day, something happens with George. He has landed in the emergency room two of the three times I’ve gotten away. Between December and late March, he was either in the hospital or at Dr. B’s office every other week. Now, with TPN, I can get out for a few hours here and there when he is not connected to his TPN infusion.
Caring for mom was like having a three-year-old in the house. It often meant I would be awoken nearly every night as she made at least one trip to the bathroom and I had to listen to be sure she got there and back without falling. Every night and every weekend I juggled between her place and ours to ensure she ate, drank, got ready for bed, took her meds, etc. It’s no wonder I can’t sit still as I’m so used to having to get up often to tend to someone’s needs.
All of this has made me learn to be patient…. I am typically a patient person, but every once in awhile I yearn for something more.
Impact #3: Wife versus caregiver. I wrote about this in a blog some time ago. The lines between wife and caregiver can be very blurry. Moving between the two of them is like a game of tennis, bouncing back and forth over the net. More often than not I feel like a caregiver more than a wife – in the traditional sense of a wife anyway. The longer time goes on, the more distant it becomes. Aside from holding hands and occasional snuggle time, I give more than I get as his needs take precedence. The love is still there – the passion long gone. This disease has taken its’ toll, has become all-consuming of any energy we have to put into a traditional husband/wife relationship.
Impact #4: Household duties and bill paying. More recently, everything pertaining to the house has become my responsibility to not only take notice of, but to take care of. Small tasks that George used to do have fallen to me. Some I can fix, others I need to find someone to help with – often meaning we are paying a fair amount of money for the repair. Bill paying, once something George dutifully did, paying bills the moment they came in, now is my duty. George rarely will even go into the office, let alone take the five or ten minutes to log on to his computer and pay the bill. For the first time (well, maybe second) since we’ve been married, I did the taxes. This is not too difficult as we use TurboTax and that expedites everything. This means that I am: wife, caregiver, bill payer, household overseer, nurse. It’s no wonder my brain rarely turns off as it is trying to plan for everything that may need to be taken care of. I am a proponent of keeping a pad with a list of the things “to do” because if I don’t, I will surely forget something.
QUESTIONS FOR GOD
1.Why me? And Why this cancer? (George) George often thinks about these questions. We will never know the reason why or why this cancer. Yet it is something he ponders.
2.Why would God do this to my mom twice? This is a question I know both of my daughters ask themselves.
This is what I believe… God put me into the lives of two men who needed me. One who came from a broken family and needed a woman whose easygoing temperament could balance out his various and assorted behaviors. From this relationship I had to learn how to keep us afloat as he loved to spend. I witnessed a person who could play like a child, but who was a quick learner for all things mechanical and a dedicated worker. This man gave me two of the greatest gifts on earth, my daughters. He taught me the power of resilience, of overcoming ones’ past by learning to do better, be better. He showed no prejudice towards other races (only stupid people, LOL). And I, in return, showed him compassion, helped return him to faith in God, stood by his side even when things were difficult for us. He was taken from this earth far too soon for our liking. It was like the carpet got pulled out from underneath us and it took us a long time to find our balance again. He would not like us to give up on life, to give up on love, to give up on each other. He would want us to go on.
After Mike’s journey was done, He put another man in my path. This man needed different things. He, too, was broken but in different ways. He needed someone he could learn to trust to be there for him. He had a daughter that needed a mother figure.
He ended up having a mother that needed help. Help I could offer willingly because I had the time. Also, if it weren’t for her, I wouldn’t have this home I live in. In a weird, twisted sort of way, Mike also helped me live in a home with something I had told him about when we were dating… I wanted a house with a white picket fence. Due to the circumstances of his death, he did help me find and purchase that home – just without him here with me.
Ultimately, God knew George would need a partner to take care of him when diagnosed with cancer. Without me, he would not be able to live.
He taught me how to better manage money. He had a salary which allowed us to maintain a beautiful home and provided health insurance to cover sooo many things.
God has given me the strength to be what these men needed. I believe I was brought into their lives and them into mine for reasons that are bigger than me. He was using my talents to be the partner they needed – and they were the partners I needed as well.
Between both men, I will be able to live debt free and not have to work for the rest of my life. I will be able to do things I never imagined.
That is the gift I have been given... to be loved by two men, to be financially independent, to have three wonderful daughters, to know I am now more than capable of living my life when they are gone in a way I never imagined.
My faith has kept me strong to handle everything that’s been tossed my way. In my lifetime I’ve had to learn unimaginable patience, to learn to set aside prejudices, to rise up and do whatever it takes to allow loved ones to be at home despite their illness. I’ve learned these not only from these two men, but from my family, my children, my friends...
I know there’s a higher being watching over me. For me it us God. I pray my children find a what works for them. Maybe it will be God, maybe from another spiritual guide. One thing I’ve learned, is that with God in your life, you will always be able to find a way to keep going, to muster through the bad times and to recognize the good times and appreciate them. Our children have (or are) struggling with those because all they can see is this bad thing is happening to their mom (and to them). We don’t always know the “why” of things. Sometimes we find out later, sometimes the question is never answered in our lifetime. But with God, with Faith, with Love and with Hope, I know for a fact we can not only make it through tragedies, we can come out stronger on the other side of them.
I can understand my children’s anger at God. Yet I know God still loves them and one day will show them what it feels like to be at peace, to give them back their faith and their hope.