Curiosity takes me to consider dying with dignity
There has been so much in the news lately about dying with dignity and the right to physician assisted suicide. A complex issue, particularly as it challenges personal core values and can cause people to choose sides. I, for one, welcome having the choice, despite the fact that I still have no idea what I would do if faced with that decision. This is probably due to losing both of my parents in the last 14 months – my mom to lung cancer in November 2014 and my dad to idiopathic pulmonary fibrosis this past December. I learned much about the state of palliative care in Toronto and Mississauga, and both the dignity and suffering of dying.
This post is written with the thought that if I can pass along even one bit of information that might help someone going through the same thing, it would make me feel really good.
Death is something we all have to face, but I was hoping it wouldn’t come so soon for my parents or so close together. It was an incredibly difficult and stressful time, but also full of wonderfully positive memories. My dad had been ill for a few years and we knew sadly that there was nothing that could be done. My mom’s illness was more sudden. This will sound strange, but I do think things happen for a reason. I had resigned my job in March 2014 and gave three months notice. I have only once quit a job without having another one lined up, but the plan this time was to take the summer off and then look for a new job in the fall. In May (on Mothers’ Day to be exact), my mom told me that she had stage 4 lung cancer. And so began the journey, one where I did not go back to work, but instead chose to spend as much time as I could with both of my parents. I learned a few things along the way:
- Start working on your assertiveness now if you have trouble with that. I found that in Ontario, as in Alberta and I’m sure the rest of Canada, it was not always easy dealing with “the system”. I got some practice over the years as my son has been in and out of the hospital dealing with a variety of issues. Ask lots of questions and don’t patiently wait weeks for answers. In conjunction with assertiveness, also work on diplomacy, as you will need it!
- Make sure you know who the primary care doctor is. This might seem obvious, but it wasn’t for either of my parents, particularly once you get specialists involved.
- Use the health care professionals whenever possible to help to explain things and deal with differing expectations or perceptions as they are far more knowledgeable and, importantly, objective than you are in this situation.
- Gain a good understanding of the stages of grief and be aware of where you are relative to the person dying and other close family members. Everyone experiences grieving differently and can seem to be in a state of acceptance and then turn to denial or anger.
- Don’t assume everything has been talked about and be prepared to have some difficult conversations. (Or, in my case, sometimes avoid conversations as I wasn’t sure how to bring up certain topics, particularly with my mom).
- Protect your energy level as much as possible. If there is an oxygen mask hanging from the ceiling, grab it!
- In that vein of thought, you sometimes have to let go of the people who can’t help the situation, yet need a lot of support. They will drain you emotionally.
- Be prepared for anything. My mom developed delirium after her second round of chemotherapy and this was really difficult to deal with as it caused confusion, mood changes and aggressive behaviour. We all thought she would “just” be dealing with nausea, but she didn’t even get that.
- Unresolved feelings can resurface. My mom and I had kind of an up and down relationship. Part of the delerium brought back behaviours which I remembered from my last year of high school when my mom was working full time, completing her PhD and also going through menopause – good times! I have to say that I found that difficult to deal with and was very thankful when the doctors were able to get her on medication that helped with that.
- Make sure you have a good friend whom you can call at any time, just to vent. (and also a calming place you can go to, just to vent – a padded, sound-proofed room might have been good too!)
- Really think and talk about home-based palliative care. I know many people want to die at home, but it is really, really difficult and I think you need a lot of support. A friend of mine was told by her dad’s doctor that only about 10% of people actually die at home. Investigate other palliative care options as early as possible (not always easy). I am still amazed at how few hospices there are in Mississauga, but am so grateful that my dad was able to get into one in west Toronto.
- Treasure the good moments, even if they are fleeting. I have many kind words, smiles, laughs and good family bonding memories that I will remember for a long time.
I still have my stepmom and aunts and uncles as support and connection to my parents’ generation, but I can’t help but feel that I am now the “older generation” for my kids. I hope to continue to provide them with interesting stories and shared memories that they can pass on down the line.