Do you know what you or a loved one would want in terms of medical care if something happens?
My mother lived for 18 months following that initial prognosis. She did pretty well for a while and then the inexorable decline started to accelerate, and she transitioned from home to hospice, back to home and finally to the hospital wing of a rest home facility. I had power of attorney for her welfare and so did everything I could to ensure that she got the pathway through it all that she had wanted.
Do you know what a loved one will want if they suddenly get really sick?
Dad went into rest home care after mum died. Then he moved to a secure dementia unit. Then one Christmas he had a stroke and was moved to the hospital wing of the rest home he was in. They looked after him so well. They are amazing, and he was not always easy. His path was up and down.
It was about an hour or so round trip to see him, which I did a few times a week. Most of his friends didn’t visit him anymore because they were faced with the discomfort of his decline. The less other people went to see him, the more I went. Trying to fill the void. He couldn’t talk very well but he was still aware. I tried to shield him from the absence of friends.
Then. One Friday. I got the call. The call from the doctor that requires you to make choices; potentially life or death choices, about the care options for your loved one. It was at this moment that I realised that Dad and I did not really have a plan.
I had tried a few times over the past few years to get Dad to talk about what he would want in terms of treatment, how he would like to be sent off after he died, what messages he would want passed on to his family or friends. But, like so many people, he refused to talk about it. This meant I had to piece together comments he made at different times over the past couple of years in order to try to think in his shoes.
What I learned that Friday when the doctor rang, was that no matter how hard it may be to get a loved one to talk about what they want, while they can, that is easy compared to the agony of having to make choices when you are not sure what that person truly wants. So, people, if you have read this far, my message to you is ‘get a plan’. You need a plan. The reality is you never know when you may need it. Honestly, it is agony if you don’t have one and nothing had prepared me for the ethical crisis I faced with that call. I believe that compassionate care at the end of life works both ways, for the one leaving and for those left behind. I think we owe it to each other to make this as easy to navigate as possible.
So, what happened next? I was able to speak to dad about his situation. I’m not sure how much he understood but I counted on at least some of the information getting through. He was able to give me thumbs down to having any treatment. I realised how lucky I was to even get this sign. I didn’t have to make the decision on my own. Others are not so lucky. The first couple of days were rocky but over the next few days, he seemed to be improving. A cold that was turning into pneumonia seems to have stalled and his temperature was down, and he was more alert. Well, by that I mean alert for a man with dementia. I asked him if he was feeling better and he gave me the thumbs up.
This is what life became. Up and down. Up and down. The rush to the bedside. The preparation for the end. The reprieve. The sorrow of seeing someone you love in such an incapacitated state. The relief of not having to say goodbye just yet .
This is what life became. Up and down. Up and down. The rush to the bedside. The preparation for the end. The reprieve. The sorrow of seeing someone you love in such an incapacitated state. The relief of not having to say goodbye just yet. The wishes for their freedom. Good days, bad days. Thumbs up. Thumbs down. Exhaustion. In all this unknowing, the thing I know now is that the transition from wellness, to illness, to death is so much better navigated with a plan.
When I started to see that death really was getting near. That is was there as a shadow, quietly taking up residence in the corner of my father’s room. I summoned up the courage to talk to him about what would happen when he died. We managed to make a plan for his funeral through thumbs and tears and eyes. Two weeks later I was standing at the lectern giving his eulogy; and I was so glad that I knew he knew how his life would be celebrated. I’m not sure how much he understood in that discussion on that day, but I’m sure he knew that he was loved.
Here is my checklist for caring for the seriously ill and the dying that I am learning from my own experience with my parents:
Make sure you have Enduring Power of Attorney for Welfare and Property sorted out well before there is any sort of problem.
Talk about what the person wants in terms of care, treatment etc. This does not have to be negative – it is a beautiful opportunity to really understand and listen to a loved one’s needs (and to express your own). I cannot emphasize how important this conversation is.
Find out if they would want to be resuscitated or not and get it written down – a living will can be witnessed with their solicitor and kept on file with them and with their GP. My mother found this act very empowering.
Find out how they would like to be sent off, what is their favourite piece of music, or poetry or place where their ashes may be scattered. Do they want a ceremony? A natural burial? A shroud, a coffin, both?
Approach all of this with ‘beginners mind’ – don’t allow your preconceived perceptions to influence discussions.
Write it all down and put it somewhere you can find it!
Remember that doing this will help families navigate the tough stuff, because you can pretty much guarantee that the stuff will get tough.
If you would like to learn more about how to care for someone in the latter stages of life in a way that connects them (and you) to the supportive and healing power of nature take a look at The Being Here Series of online training and workshops.