Denise, caring for her husband and parents
I was elected to the Nova Scotia provincial assembly in 2009 and 2013 and had the pleasure of serving as Minister of Community Services, Seniors, and the Advisory Council on the Status of Women. I always viewed myself as employed by the people and strived to be as compassionate as I could during my time there. I worked extremely hard to be non-partisan and to serve everyone equally, with compassion and understanding, even for those who reacted negatively just because I was a politician. I became known as the huggable Minister because for me, it was an expression of caring. With COVID-19, I now share my hugs virtually!
I was in office a little over three years when my brother died July 31st, 2012 from a massive heart attack. Then in 2014 my husband suffered two strokes and around the same time, my mom was diagnosed with frontal lobe dementia. I became the breadwinner of the home. I also had to put my parents in a small option care facility so they could have PSW care but still live independently. My parents were able to live together until her dementia made her lash out and be aggressive, which was completely opposite to her nature.
These were surreal and difficult times. Somehow you draw on your inner strength and for me, my natural stubbornness, to help get through each day. A sprinkle of humor, when appropriate, can also be part of coping mechanism for both the person you are caring for and yourself as the caregiver. Sometimes, you may have to look for the laughter through a television show, movie, or a book; but it is worth it for your mind and health.
The pressure of caring for my parents and husband, while providing the sole income in the home, was so exhausting. It caused me to ignore my body. In 2016, I could not ignore it any longer and saw professional help. I was diagnosed with Multiple Sclerosis. I felt like a tree in a horrible windstorm and the branches were all my responsibilities furiously swinging in every different direction, while my family roots were being torn apart.
All my mother wanted was to go home to her sanctuary where she lived for close to sixty years. Mom told me that everyday and probably over twenty times a day. In a world that offers so much in materialism and technology, and where humans can be sent to outer space, I could not find the help or services so my mom could live and die at home. Her disease did not allow her to understand because to her it was simple and that I should put her in my car and drive her home. I cannot even explain how heartbreaking it was when my mom, who was my best friend and used to be so kind and loving, angerly lashed out at me yelling that I abandoned her.
The last three months of her life, COVID-19 stole my right to be with my mom. At this point I held onto the fact that she still had tiny moments of reality; and the last time we spoke on the telephone she told me she loved me. I was also more fortunate than many others because I was able to be with her the last few days of her life. Mom was always scared of death and although she was unconscious, I felt she could hear me. I crawled in bed with her, put my arms around in a hug I never wanted to let go. Although I cannot carry a note, I sang to her you are my “Sunshine”. This was mom’s favorite song to sing to my son when he was a baby. I have never seen anyone die before but I was not willing to let mom die without me being there. My mom saw me take my first breath with all the joy in the world; and I saw my mom take her last breath with all the sadness in the world.
Presently, I continue to care for my dad and my husband and even two aging dogs one with Cushing disease and the other with cancer, and of course as a mom I will always be caring for my son. The thing about caregiving is everyone seems to think that it is only a time in your life when your parents become elderly. That is far from the reality – if you are a parent you are a caregiver, you may have a family member with physical or mental health issues, you may have a child with intellectual disabilities, you may have a friend that relies on you for help. There are different levels of caregiving, yet we do not recognize it in our society.
The failings, neglect, and inadequacies of seniors’ care brought by the lack of national and provincial standards has been a wood rot on the tree of life. Healthcare has been in a crisis and COVID-19 certainly exposed these issues. I pray that after we get through this pandemic, the serious issues surrounding senior care and caregivers are not ignored again just because the rest of our society is back to normalcy. We are all in this together and we must advocate to the policy makers and governments. We are awfully close to not being able to save our tree of life especially for seniors and their caregivers.