Mom left us on Tuesday, March 26th after a very short illness, following a cancer diagnosis on January 5th. I can’t say that it was a battle, as she very quickly came to terms with her diagnosis, accepting her outcome with dignity and a few laughs. Although her outlook on her prognosis made it infinitely easier for us to process the fact that our mother was no longer going to be a part of our daily lives, dealing with her diagnosis was anything but easy.
There is nothing simple or easy about helping someone transition from a healthy active and contributing member of society to one who knows that her days are numbered. Our health system is certainly not designed to alleviate any of this stress…more often than not, we were learning that there was a tendency to add to it, rather than reduce it. But I digress, as I wanted to share some of the unexpected things that occurred over the past three months as well as the gifts that came because of it.
We very honestly believed that our mother would live well into her 90’s as did her father. She was not only physically fit and very active, she was very sharp as well. So to go from a person who walked everywhere to not being able to walk at all within the space of four weeks was mind-boggling. Yet, we adapted to these changes easily, as it was just the thing to do to support her.
We were also not prepared for the changes to her physical appearance. Dexamethasone is a steroid used to shrink swelling in the brain around the tumour. Although it does help, a side effect is some serious swelling and puffiness in the face, referred to as ‘moon face’, and although that wouldn’t be the term that I would use to describe it (it was more like a Cabbage Patch doll back in the day), Mom’s face was suddenly puffy, swollen and very round. Somewhere under that stretched skin was our Mom, and it was bizarre to experience.
At the same time, another side effect of this drug is the likelihood of thrush or canker sores in the patient’s mouth. Unfortunately, Mom suffered because of these sores, making eating very painful. To treat her, after a gongshow between the palliative team and her family doctor, Mom was first given Magic Mouthwash, something that only numbed the sores slightly. Then, when in Riverview, she was given Nystantin, which also didn’t do much to relieve the pain. Now, my sister requested Fluconazole, and had done so for approximately three weeks to no avail. However, due to the state of her mouth, the last doctor at Riverview chose to prescribe this drug, and strangely enough, her mouth started to feel better. It’s crazy what may have happened if this particular drug had been prescribed as requested four weeks prior.
All this didn’t seem to affect Mom’s appetite while using Dex, however. She loved to eat, which I wouldn’t have expected given her propensity to not want to eat when she wasn’t feeling well. However, she polished off every plate with relish and was very enthusiastic about the meals that were prepared for her. This was always followed up by a request for ice cream, because on the day of her diagnosis, her doctor told her that she could eat all the chocolate and ice cream that she wanted. She took this very much to heart and enjoyed bowl after bowl of cookies ‘n cream ice cream and ice cream sandwiches, to the point where it became a running joke with us. When questioned about snarfing back her third bowl of ice cream, she eyed her interrogator and responded, “What? It’s not going to kill me!” And so, we stopped asking questions about her newfound passion for dairy products, and continued to help her make up for lost time during all those years when she didn’t eat ice cream.
I also didn’t expect our health care system to be so disorganized and frustrating. Don’t get me wrong. We met with extraordinarily empathetic and kind individuals, particularly when Mom was placed at Riverview during her final three weeks. And she was very outspoken about how grateful she was for the care that she was receiving. Now, keep in mind that one of her daughters or grandchildren was usually at her side to advocate for her, but she felt that her caregivers treated her very well. So I will hold on to this.
I did not, however, ever consider having to advocate for my mother with such intensity throughout her short-lived disease. I did not ever think that I would have had to convince a doctor that she required pain medication to ease her suffering, because he couldn’t determine if her pain was cancer-related or attributed to something else like old age. Given that the woman was close to the end, I’d say that was probably a moot point at the time, but again, having to go through this experience was overwhelming. I also did not expect to hear this same doctor ask my mother how she felt having a strange man rub her belly. I’m assuming that this was an attempt at humour, but when my sister informed him that he had crossed the line, he was quicker to move to get the necessary drugs. Again, offensive and not appropriate then…or ever!
The capper was the arrival of the social worker designated to our case. She arrived an hour and a half before my mother passed, asking if there was anything that she could do for our family. Keep in mind that this was the very first time that we had met her in the three weeks that Mom had been a resident at Riverview. I’d say that she was just a tad late to the party.
My advise to you
Whether you are the one who has been physically subjected to this disease, or you are the support system in place to help your loved one, ADVOCATE…ADVOCATE…ADVOCATE for that person. Speak up, speak often, speak loudly if necessary. Do whatever it takes to get the answers that you need to process this information. Do whatever it takes to ensure that your person gets the care that he/she needs. Do your research and question everything so that you have a grasp on what is going on. And when they begin to throw large words your way in an attempt to dumb you down, force them to speak in a language that you can understand. DO NOT GIVE UP!
As much as a terminal cancer diagnosis sucks, it also gives you time to say what needs to be said to the people that you love. Although we could have used so much more than 11 ½ weeks, this allowed everybody in our family to share their thoughts and feelings with Mom, whether it was her children, grandchildren, sisters, brothers, nieces and nephews or friends. And we can find comfort in the fact that she absolutely adored us…quirks and all. When my youngest Face-timed her from Peru, she let Mom know once again how amazing she was as a grandmother and how important that she was to all the kids…and then she began to cry. So my Mom wrapped her arms around the iPad and held on tight in an effort to comfort her. When I suggested that Brooklyn might not be able to see her, Mom said, “No, but she knows that I’m hugging her.” Okay, so more tears. This gift of time, albeit it very short-lived, was an opportunity to say all that needs to be said so that the one leaving and those staying behind have that sense of peace that comes from knowing that you are loved.
My mother also made a tremendous impact on the people in her life, which was evidenced by the people who came from all around to spend time with her in her final weeks. Although we had met many of them over the years, we had also heard many stories about some of them from her childhood or her bowling days, neighbors and former colleagues. Being witness to these friendships allowed us to see our mother in a different light, because although she had always had a great sense of humour, it was on a whole different level with her childhood friends. Somehow, in the midst of a terminal diagnosis, they just allowed themselves to be, and Mom did that in our presence with her friends. This was a highlight for me, not only because I enjoyed watching her giggle like a schoolgirl with her best friends, but I was able to witness their absolute love for my Mom. It was incredible.
We were also blessed with an amazing support system. Friends cooked for us, looked after our dog, showed up with a tea when needed, or a shoulder to cry on. They watched over Mom when we needed to run errands and stayed with her so that we could pay some bills. I believe that what you put out there in the world will come back to you three-fold, and in Mom’s case, she gave so much of herself during her very active lifetime, something that was paid back many times over during her final 11 weeks here on Earth. Their thoughtfulness and incredible support was another gift, and so very greatly appreciated.
Be open to the support that is being offered, because any time that you are dealing with a loved one’s terminal illness, your whole physical, emotional and mental state will take a major hit. You will need that support to remain as healthy as possible to continue to be there for your loved one.
Then, and most importantly, don’t wait for a cancer diagnosis to be open with your loved ones. Tell them that you love them daily, or as often as possible. And if it takes a cancer diagnosis to open up those floodgates, keep them open, because the gift of your love is the best goodbye.