Caregiving

March 22, 2021

Her absence is never unfelt

I'm WillowjakMama!

My blog started as a way to document my journey to wellness, but turned into a place to be inspired by others through our collective messy & authentic stories. Now it's my favourite place to be.

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The second anniversary of my mother’s death is approaching. She passed on April 3, 2019. In 2010 at the age of 65 she was diagnosed with breast cancer. She had a lumpectomy and at the same time, the surgeon removed 19 lymph nodes from her left arm. Cancerous cells were found in 16 of the 19 nodes indicating that the cancer had spread outside the breast tissue. The cancer was considered stage 3B. She underwent chemotherapy that made her so sick she couldn’t complete the final round. Following the chemo she endured a month of daily radiation treatments. At that time my children were young – 3 and 6 – and I was working full time. I was there for my mother as much as I could be, but she understood that the circumstances of my life made it difficult for me to spend a lot of time with her.

The cancer treatments took a toll on my mother’s physical and mental health. She was left with nerve damage that mostly affected her feet. She lost a lot of sensation in her feet but she would also experience burning pain in her feet at times. She often felt disoriented when on her feet because her brain did not properly receive the sensory feedback from her feet in order to know where her footing was. To compensate she started walking with a cane, and overall her ability to walk long distances was diminished. Another difficult side effect of her treatment was lymphedema. Because she had so many lymph nodes removed on her left side, she experienced a lot of pain and swelling on that side. She had to learn techniques from a specialised nurse to encourage her compromised lymph system to function better. My mother (a retired nurse) would talk a lot about the problems she was experiencing due to the treatment, but she was never complaining. She was determined to find a way to live with her damaged body so that she could find enjoyment in life and especially so that she could enjoy spending time with her four grandchildren.

The experience of going through such difficult treatment took a toll on my mother’s state of mind and that of my father as well. My dad was my mother’s main caregiver for the 9 years that she lived with cancer. He took her to every appointment, cooked for her even when she had no appetite, washed the sheets when she would soak them 2-3 times a night with perspiration and just in general was an unwavering supporter along her journey. But my dad is not a superhero, so there were times when his exhaustion got the better of him. My mother was a very particular person and somewhat of a “control freak”. It drove her nuts that she was too physically weak to do all the things she had been used to doing. Although I don’t think she was fully aware, she was often critical of how my father did things and did not hold back on voicing her criticism. After the first year post diagnosis and living through the very difficult months of treatment and getting used to the new physical limitations, my parents were definitely experiencing problems in their relationship. As their children (despite being adults ourselves), my brother and I found it really hard to see my parents go through this. My mother started to confide in me like I was a friend and not her daughter and as hard as it was, I had to set boundaries in terms of what I was willing to discuss with her and what was too awkward. Fortunately, my parents did see a counsellor for a while which seemed to help.

By mid 2011, about a year after the initial diagnosis, my parents decided to sell the house they had lived in for nearly 40 years. It was a bungalow but the laundry was in the basement as well as the family room. My mother had constant pain in her knees and nerve pain in her feet so going up and down stairs was becoming very difficult. My parents had spent many years building extensive perennial gardens under the huge oak trees in the backyard. The back garden was a true oasis of green on hot summer days, but my mother knew she could no longer manage the garden’s maintenance. While my father was happy to do a lot of the garden grunt work, the planning and maintenance was definitely my mother’s passion. It hurt her a lot that she could no longer pursue this hobby. Sorting through the years of belongings and memories was an ordeal. I remember once going over to help my mother go through boxes. My mother was not a hoarder, but she did hold on to a lot of things that could have been tossed and never missed. We started opening boxes and discovered a bunch of things she had packed up 5 years previous from her workplace when she retired. Her last nursing position was as a case manager for community care. She had clearly just cleared the contents of her desk, put everything into 2 large cardboard boxes and then dumped them in the small bedroom in the basement. It was hard helping her go through things because I wasn’t allowed to make any decisions on my own about what should be thrown out and what might be worth holding on to. I could not see any value in holding on to these work items that had sat in boxes unmissed for years but my mother had to carefully inspect each one to eventually arrive at the same conclusion—they were all junk.

The new struggle became where to move to. A home with every essential space on one level was top priority. My parents made two discouraging discoveries. First, their house on the East Mountain in Hamilton was not worth much and second, everything they deemed worthy of buying was about $200,000 more than what they would make on the sale of the house. Most housing geared to seniors were either multi-level town houses or pricey condos. In the end, they decided to rent an apartment in a new building in west Burlington. My father’s heart was not in this move. When he admitted to my mother that if not for health problems, he would gladly stay in their house, she was angry. In the end, adapting to apartment living, with its second-rate appliances, thin walls and cheap broadloom was a very difficult transition for both of them. But over time, they made some wonderful friends in the building which despite being open to any ages was mostly inhabited by seniors. There were Coffee Tuesdays and Scrabble afternoons that both of my parents enjoyed a lot. The ability to just turn the key in the lock and go on vacation without the worry of snow removal or garden watering was also a huge bonus that came with apartment living.

By the summer of 2012 my mother was feeling closer to her pre-Cancer self and she and my dad resumed camping in their small but perfect trailer. They went to Ottawa to visit my dad’s brother, to Sault Ste-Marie where they both grew up to visit old friends and even down to Florida to visit my mother’s sister and extended family. We were all so encouraged that my parents could resume their love of travel. With these shorter trips successfully under their belt, they decided it was time to take on a travel dream of theirs or it may never happen. In the spring and early summer of 2013 my parents embarked upon an epic road trip that saw them travel down to Texas, Arizona, New Mexico, California and then up the West Coast all the way to Victoria to visit my mother’s other sister. Then through the northern US states back home. They came home tired but full of amazing stories and photographs. We are so thankful that they were able to undertake this huge trip with success.

During this time, my mother’s cancer was always in the back of our minds. The average patient treated for her kind of cancer at the stage it was experiences a relapse within 5 years of treatment. No one talked about it out loud but we all knew that my mother’s cancer battle was likely to resume. We just didn’t know when, until we knew of course.

In March 2015, my parents were in Sarasota, Florida and my brother and his family had joined them for March Break. One evening my dad drove over a speed bump in a parking lot and suddenly my mother experienced a shooting pain in her upper neck. She just thought she had twisted her neck, but that night when the pain increased in intensity and she could not sleep, she started to worry that something else was going on. The next day she booked a massage, but that provided only the tiniest bit of relief. Reluctantly she asked my dad to take her to the hospital. It was discovered that my mother had broken her C4 vertebra and the doctors surmised that this was likely due to the cancer spreading to her bones. They wanted to perform a very invasive surgery to insert a titanium rod in my mother’s spinal column saying this was the only way she could avoid paralysis. Not surprisingly, my mother’s travel insurance company wanted her to return to Canada for the surgery.  In the end, my mother stayed nearly a week in that Florida hospital waiting for approval to be brought back to Canada on a medical flight. Once back in Canada, it was confirmed that her cancer had spread and there were many bones in her body that showed “spots” of cancer. Her hip bones, femur and even skull had areas of growth. We all thought this was it and she would have only months left, but her amazing medical team put together a treatment plan to both regrow healthy bone tissue and kill the cancer or at least slow its spread. She had to wear a neck brace 24 hours a day for 6 months, but she never required that extensive spinal surgery that the doctors in Florida were so eager to perform – they were practically salivating.

The last 4 years of my mother’s life were very difficult as she was now living with stage 4 metastatic cancer. She took a variety of chemotherapy therapies all of which were designed to prolong her life, but never with any hope to cure. When one stopped working, the oncologist would bring the next on board. With them came a host of side effects that my mother endured bravely because she wanted as much time as possible with her friends and family. She ended up in the hospital 3 times in the last 2 years of her life. Once it was because a fast growing tumour was discovered growing out of her pelvis and had cut off her urinary tract. For weeks she had to travel with a catheter bag while she waited for some targeted radiation to shrink the growth. She developed a horrific case of shingles in the late summer of 2017 but was determined to go to Florida that October to attend her nephew’s wedding. She was incredibly weakened by the shingles and still had painful and itchy scabs covering most of her back and her right arm but she was determined. She pushed herself to enjoy the wedding but then found herself too exhausted to leave the condo they had rented for the rest of that week. We thought she was going to die on Thanksgiving weekend of 2018. Suddenly she found herself in the most excruciating pain and unable to eat, drink or move. After a few days in the hospital and many tests later, the doctors concluded that she was experiencing an acute pain episode. They sent her home with a morphine pump that was attached to her 24/7 and required daily nursing, but she was not finished yet.

Every Christmas beginning with Christmas 2010 I wondered if it would be my mother’s last. In 2015 the year we discovered the cancer had spread, I was convinced that would be her last Christmas, but it wasn’t. In 2016 after the radiation treatment for the pelvic growth I thought for sure that was her last and then again in 2017 after the shingles. But in 2018, something was different and I knew that Christmas was for sure going to be her final one on Earth. We hosted our family dinner at our house that year and I watched how my mother struggled to stay alert and sitting with us for the whole evening despite her exhaustion and pain. Spending this precious time with her children and grandchildren was all that mattered.

The winter of 2019 my mother was declining and we all knew it. She had very little appetite and even less energy. The last family event that she came out for was during the first week of March to celebrate my brother and my niece’s birthdays. Two weeks later the oncologist confirmed what we had all known. The latest chemotherapy drug was no longer controlling the growth of new tumours and the situation would soon be critical as my mother’s liver function was diminishing daily.

On March 30 I helped my mother pack to move into the hospice she had chosen. She was already so ill that she had trouble feeding herself the soup we ate that day and she also was having trouble making decisions and finishing her sentences. When my children came to see their grandmother at the hospice a day and half later, she had lost the ability to speak although she smiled broadly at them as they hugged her and spoke to her. She took her last breath only 2 days later on April 3, 2019 in the late afternoon. My brother, sister-in-law, father and I were all by her side. Watching her slip away over those last few days was a very difficult experience, but I feel fortunate that she was able to be in a loving and comfortable environment and that many friends and family members came to give her a final kiss and words of kindness.

And now it is nearly two years since that day and so much has changed. As much as I miss her every day, I am so thankful that she did not have to endure living in her condition with the added fear of the Covid-19 virus. My mother lived the last 4 years of her life with a greatly weakened immune system and was in constant fear of contracting even the common cold. I have not felt complete in nearly two years, and I guess this is the way I will feel for the rest of my life. When you lose someone who means so much to you, their absence is never unfelt. The way my mother faced and lived with her cancer diagnosis and years of treatment was truly inspiring. I am stronger for having witnessed her determination and strength.

Allie G.

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Hi, I'm Stacey.
Welcome to the
Willowjak Blog 

My blog started as a way to document my journey to wellness, but turned into a place to be inspired by others through our collective messy & authentic stories. We chat about themes that are often ignored and voices that aren't often given a chance at the mic. Now it's my favourite place to be. 

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