Have you had “the talk” yet?

Ron Posno, age 80, sits on DWDC’s Disability Advisory Council (DAC) and advocates tirelessly for the right to end-of-life choice. You can read his previous DWDC blog post on living with dementia and his personal perspective on Canada’s medical assistance in dying (MAID) legislation here. In this piece, he reflects on the importance of having “the talk” about end-of-life care and decision-making, and empowering people to live by the phrase “my life, my choice.”

“Dad, how can you say that… how could you… that’s terrible!”

Voice choking, tears streaming… Maddie buries her face in her hands. Her brother, Tom — opposite at the table — clenches his fists and glares. Mom just looks frightened and stares resignedly.

Not the best way to end a family gathering after Sunday dinner.

“The talk” is difficult and maybe it should have been started easier… maybe earlier? But I was resolved. I have dementia and I am going to die — maybe sooner or maybe later — but dying is inevitable. And, with a diagnosis of dementia, my remaining passage of lifespan is fraught with uncommon difficulties and problems. It was time to begin “the talk.” Any measure of the future may be too short.

Two years ago, this need for “the talk” was jogged when CARP (Canadian Association of Retired Persons) stated that 57% of people over 60 had not completed any kind of a will. Shocking! But I didn’t do anything. I had a will completed some ten years previously, but that was before I was assessed with dementia.

And yet “the talk” has to happen; not necessarily with so much drama, but it has to be initiated.

Author Ron Posno, speaking about his journey with dementia on CBC’s MAID Town Hall program

Patti Lovett-Reid, respected financial consultant with CTV News, took considerable time on her program to state, unequivocally, that with the COVID-19 pandemic, everyone should get their financial affairs in order and prepare their Advance Care Plan (ACP) as soon as possible.

I have dementia; other people may have some other life shortening and fearful disease or medical condition. Others may be without a diagnosis, drifting through their final years with little thought of “the end.” Whatever the case, CARP makes the point and Patti talks of finance.  All of us, even those who judge themselves as “healthy” over 60 years of age need a plan.

DWDC (Dying With Dignity Canada), ASC (Alzheimer Society Canada), DAC (Dementia Advocacy Canada), the Parkinson’s Society, and many more organizations all make a strong point of the need for an Advance Care Plan (ACP).  And of course, that ACP ties directly into your Financial Plan.

You’re going to need two plans: A care plan and one for finances (if requisite attorneys are available to help you with the respective plans, that is an option). Both plans need to be shared with both attorneys and your family. Hence, “The Talk.”

Note: I am discarding further reference to Attorney (that’s for the lawyers) and exchanging “attorney for finance” and “attorney for property” for “Substitute Decision Maker (SDM)”. That’s a generic term for the person(s) who should be involved in all your planning and who your lawyer will eventually designate as Attorney – (Property) and Attorney – (Health) in the formal and legal designation of your Final Will and Testament.

I am not writing this for those who are healthy. This is for those of us who are exceptional — facing illness, disease, or some feared, agonizing medical condition. In fact, it’s really for people with dementia (I know us best). Our Advance Care Plans are each unique — based upon well-defined wants, needs, and costs. And that determination of wants, needs, and costs is exactly what should be shared with your SDM and family. The sooner they can be brought into the discussion, the easier it will be. There will still be tears, even some frustration and anger, but the discussions and decisions are best made together. After all, your SDM will have the moral and legal responsibility to carry out your wishes and make all the corresponding financial and medical decisions while you may be incapable. In reality, the sooner your SDM can participate in your planning, the better. With early involvement, your SDM may even help you with when you go to your whole family and your friends for “the talk.”

Many people contemplating their final end-of-life plans have found solace and relief in the consideration of Medical Assistance in Dying (MAID). Unfortunately, MAID as it’s currently written into law denies access to people with dementia even with the proposed changes of Bill C-7. However, many of us have gone ahead in our planning with the inclusion of MAID. In my case, I have detailed eight very specific common conditions which, if any one condition presents itself during my anticipated end of life, then I want my SDM to bring forward my completed official request for MAID.

I want to discuss my wishes and conditions for MAID as part of my “talk.” The people for whom I most care are all capable of understanding. And while I am still capable, including my conditions in “the talk” should do much to soothe their feelings and lead to easier acceptance when my SDM later proceeds with implementation of my wishes.

So here’s the reality. We are all going to die — some sooner and some very painfully. Unfortunately, we can’t all die quietly and easily during the night. Self-respect, dignity, and painlessness loom large in our minds as we edge closer to the end. Our family and our friends matter even more. Can we help them with their inevitable grief by converting “the talk” to “the plan?” Their inclusion in considering all the elements in your planning can do much to ease their sorrow. Planning can become a true celebration of your life. Do it now! It is truly …

YOUR LIFE, YOUR CHOICE

Life and death with Ron Posno – MAID advocate and teacher: No Nonsense with Pamela Wallin. Listen here.