I haven’t figured out why this conversation is so unwelcome. Maybe I’m just so comfortable with the idea due to my many years in nursing that I have lost perspective. It is something that we all face, yet still we struggle to talk about it openly.
Many people just don’t want to ‘go there’ but that is exactly where this blog is going and I encourage you all to force yourself to keep reading.
Death and Dying.
The reason this is in the forefront of my mind is that we recently lost my father who suffered through a number of years with dementia. And while the events of his passing, a stroke that he could not recover from, were not unexpected, the way that his last 3 days played out were frustrating and difficult.
My father ended up dying in a hospital attended to by a physician that clearly did not understand end-of-life and the choices that we were making to allow my father to die with peace and dignity. I found myself having to be the nurse and advocate for my father and my family at a time when I should have been allowed to be the daughter.
I’m not sure that having more open and exacting conversations with my father would have changed everything about the care that he received in his final days, but it may have prevented some of the challenges that we faced.
Though he had communicated to my mother that he did not want to have a feeding tube, little else was ever communicated about how he wanted to die. It was a topic that he did not want to discuss in any great detail with the family for whatever reason, and it left us making decisions based on our best guess at some level.
The conversations that would have been good to have were about what he would want in the event of a stroke that left him unable to swallow (or any other end-of-life event). Did he want to stay at the nursing facility where he had been living for some time with the staff that knew him and cared for him? Or, did he want to be sent to the hospital?
From my experience as a nurse I know my Dad did not receive any treatment or lab or study (except for a CT scan) at the hospital that could not have been done at his nursing facility.
If we had conversed about these things as a family and then he had communicated his wishes to his physician, or very clearly outlined it in an advanced directive, maybe he could have avoided that last trip to the hospital.
He could have indicated if he wanted all of us there or not. Did he want to die in the hospital or at home? Did he want us to sing, say prayers and hold his hand? Would classical music soothe him or did he welcome the quiet?
Clearly we all did the best that we could. We were left doing the things that we thought he would like and appreciate and bring him comfort.
I did battle with the physician who wanted to treat his lab results rather than considering the person and the event for what it was. I battled with the nurses, who should have been his advocate, about measures that would have made his passing more comfortable and less painful for the family. It could, and should, have been a much better passing.
The main point is that if you do not clearly communicate what it is that you want (or don’t want) at the end, you are likely to get what your family decides under the pressure of the situation.
Conversations about death and dying are important! Most people spend more time planning a vacation than they do thinking about what they want at the end. And as a nurse I have seen families struggle over and over with making those decisions.
None of us gets out of this life alive. I’m not asking you to dwell on your death, but accepting that it will happen and planning as best you can for that eventuality will help your family when the time comes. Do you want a party? A funeral? Cremation? To be buried? Do you want to be at home or in the hospital? Who do you want to be there? You get to choose…..but only if you choose to plan ahead.
If you can even begin to consider what I am asking of you, please take the time to visit The Conversation Project website. Here you will find guidance and direction for making those decisions and having those difficult conversations.
And then do it! Plan it, communicate it and then get on with the business of LIFE! Live it to the fullest. Enjoy your time here on earth knowing that in the end, things will be as you want them to be and your family can rest assured that they helped you to ‘go out’ in the way that you wished.
On the journey with you…….Kathy
Kathy Eynon is an Eldercare Coach and Consultant that works with those struggling to cope with the demands of caring for an aging parent. She can be reached by email at: Kathy@ParentCareAlliance.com.