Dying Sucks

This isn’t a profound blog about finding meaning and beauty in death. Because the process doesn’t always work out that way.

All living things die. But the dying isn’t always beautiful, peaceful or gentle. It can be a struggle for the dying and those trying to support them. It can be a fight for dignity, the right to choose, a struggle to make hard choices in difficult situations.

My mother-in-law died today.

I’m equal parts sad about the loss of her fierce spirit in our lives and relieved that she is no longer suffering.

A woman of formidable strength, independence, opinions and certainty, she made a choice about what she was prepared to live with — and ultimately what she was not prepared to live with. She brought that fierce independence and will to her final choices, choosing a difficult path to death.

We had countless family conversations about what to do, how to support her, how to challenge her choice or encourage a path towards life instead. Ultimately we chose as a family that the independent, fierce, tough woman she was is who we would honour and respect. While we encouraged life, we chose no invasive procedures that would prolong that life. It sounds like it should have been a peaceful, smooth process. But it wasn’t. It was bumpy, hard and challenging. Perhaps death is always like that? I know it’s not meant to be easy, like its portrayed in the movies. I wonder though if it could be smoother.

Along the journey to death, we encountered retirement residence staff ill prepared to support palliative care so she could stay in familiar surroundings. These same staff lectured us about how we needed to undertake invasive procedures in order to “give her a chance”. In my head, I would think that we would be giving her a chance at what? A life in circumstances where she wouldn’t want to live? A life that didn’t meet her definition of a quality life? Where this exceptionally proud woman experienced shame, humiliation and embarrasment on a daily basis? For me, the impact of the interaction with retirement residence staff was to leave me feeling like I had failed her for trying to honour her wishes.

She was transferred from familiar surroundings to the hopsital. There we met with doctors and nurses familiar with real palliative care, in the best interests of the patient. They made her as comfortable as possible with pain medications, sedatives, and kindness. A day and a half later she breathed her last. I’m grateful for the kindness and support of hospital staff, but I’m deeply saddened by the lack of dignity and respect provided to people who are dying along the way, or who choose that their time has gone.

My mother-in-law was a few weeks shy of 90. She had lived a full and beautiful life. She had a DNR (do not resuscitate) on file. She communicated her wishes, her views of what made a quality life, of the indignities she felt were acceptable, and those that were not. Over the last few months, as her cognitive abilities declined, many of her friends and care staff suggested our family needed to step in and “fix” the situation, and make choices about interventions on her behalf.

There is a line. A line where we respect another human being’s right to decide for themselves, and where we support them when they are no longer able to make decisions for themselves. I have learned this from my husband, who has gracefully and with deep compassion now supported both of his parents through the series of tough choices that end in death. Where he supported them to stop driving, choose living circumstances where they were supported to be independent as long as possible. He didn’t decide things based on how he wanted them to be, but on how he interpreted they would choose and what they would want. It’s been this beautiful dance of respect and dignity and he is a master at it.

There is this prevailing view I’ve been witness to that when people become elderly, their family members should step in and make decisions as if they are children. I feel deeply that when we step in to make decisions for others, we should be making those decisions based on who they are, and what they value, from a place where we hope to be channeling what we interpret would be their wish if they could decide for themselves. Not where we make choices based on what WE want for them, but what they would have wanted for themselves.

There is this tension in society that so many people say they don’t want to live in these painful, totally compromised situations when they are elderly. And yet when their family members become elderly, every measure is taken to keep them alive, regardless of the consequences. How do we reconcile that? How do we bring back dignity and respect for the dying to the forefront of decision-making?

We don’t want to talk about these things. So many of us put off these conversations, thinking that we will talk about them when we need to, or one day long in the future. I think that by the time we need to have these conversations it is often too late. Sure it might be uncomfortable, but so what? Living in pain, in circumstances you would never have wanted to be in is far, far worse.

Here is my advice to you.

• Don’t leave it to your family to channel your values, hopes and wishes and second guess whether they got it right. A DNR is not enough to provide guidance n the day to day choices that lead to death.
• Have the conversation with your family TODAY about what you want, and don’t want. Sit at your dinner table and talk about cognitive ability, physical impairment, and quality of life.
• Write your wishes down. If you don’t know where to start go to Dying with Dignity and look around. They have some great resources, including advanced care directives.
• Choose someone as your power of attorney who you really believe will respect YOUR wishes, values and needs rather than make decisions based on the wishes of others or out of their desire for you to stay around a little longer. Choose someone who will treat you as an adult, even when your cognitive ability declines, and who has deep respect for you.
• If you decide to leave your home and live in a retirement residence, make your choice in a way that includes knowledge of their view, approach and ability to support you in your final days. Know how they can support you in your independent living days, but your last days too.
• Make sure your medical team knows your choices, and is prepared to support them. If they don’t, pick a new medical team.
• Recognize you can have a full and meaningful life even with physical and mental impairments that come from illness. Decline is a part of aging, and your family and friends will want you around as long as possible. You have much to contribute even if you are incontinent, need a cane or walker or your mental abilities decline. There is still much life to be lived, so don’t make your choices too restrictive.
• In the end, life is so very short and over in a flash. One day you are 16, and then you are 50, and then 80. It goes by in a blink. Take care of your mental and physical health, life well and fully and don’t waste a moment of it. It’s deeply precious, and gone far too soon.
• Make your choice carefully. Know that even if you make your choice to die, and the people who love you support that choice, you will be missed and there will be a hole in their lives where your spirit once was.