While all of us will die, none of us want to think about someone precious in our world dying. Hearing that a loved one has been diagnosed with a life limiting condition or illness can literally knock the wind out of our sails.
So the first thing to do is to stop and breathe.
And then do it again.
And again.
Make yourself a cuppa or get a big glass of water and sit and stop.
There will be occasions in the time coming, for however long your loved one has, when things will seem out of control. So take this opportunity to stop and allow yourself to start to process the gravity of this news. This is big stuff. Your world has just changed and it will never change back. Allow yourself some time.
Practical
From the practical perspective, information is power and when you are informed, you can make informed decisions. When you have an understanding of what the road ahead may look like, it can help you cope with how things unfold. There are fewer surprises and that can make living this experience much easier.
For most illnesses/diseases/conditions there are information and support organisations that can provide you with valuable tools and resources. Things like what to expect along with support from others who have walked this path can make your experience much easier. Make use of these organisations and their resources as that is why they are there.
If you are part of this precious person’s inner circle and if you can, start discussing with them what the road ahead looks like for them. What do they want? Where do they want to be etc? This will then inform other information, services and resources that may need to be accessed.
Things like:
~ If they want to stay at home, what equipment will be needed to make that possible?
~ What in home nursing and care services are available in your area to assist with that happening?
~ Can this person’s tribe step in to help – people to do the washing, shopping, cooking, cleaning, someone to co-ordinate all of this etc
~ Could an End of Life Doula help with all of this?
~If they want/need care, what are the options?
Emotional
Know that you’re going to possibly feel a whole host of emotions, and that is perfectly OK. What matters is how you manage and express those emotions.
Feeling emotions is a part of this human experience we call life. Sharing those emotions is also part of how we deeply and authentically connect to others. It’s important that you have a tribe, professional or process that allows you to truly share all that you are experiencing.
If it’s a tribe, be mindful if they are also part of the circles of people who know and love the person with the life limiting condition. There is a theory called the Ring Theory and it includes the process of Comfort In and Dump Out. This was created by Susan Silk and Barry Goldman.
The theory starts with a series of circles with the affected person in the centre. There will be one set of circles for your loved one a d another separate set for you. Some people will appear in both sets of circles)
Then in ever larger circles come other people, starting with those closest. As the circles expand and move further from the person in the centre, so too does the connection to them. These circles of care are known as a Kvetching Order. And the rules of the process of Comfort In, Dump Out means that if you need to complain, whinge, are struggling etc, you can only do that with people in rings larger than the one where you are. The reverse of that is the provision of caring, love, comfort and support is given to those in rings smaller than yours.
If need be, draw your own diagram of circles and put in on the fridge or somewhere where the relevant people will see it and explain the concept as needs be.
If you have unresolved issues, consider seeking professional support to assist you work through those issues. Also, before raising them with your dying loved one, consider if it will help or hurt them. And I mean, deeply consider. The goal is to work through your issues without adding trauma to anyone else.
Spiritual
In my work with loved ones, the goal is for them to avoid or minimise regret as part of what will be their grieving experience. Grief is to be expected, but regret does not automatically have to be part of that experience.
This is the time to harness your beliefs, whatever they may be, to assist you cope. Be mindful though of not disrespecting the beliefs of your loved one if you have differing beliefs. I heard of an atheist man in a hospice where staff would say to him that they were praying for him. The issue is not that they were praying – in doing so, they were honouring their beliefs. The issue was that they told him they were praying for him – that disrespected him and his beliefs.
As much as possible, make the most of this time, for knowing is a gift that not everyone receives. Create precious memories, laugh lots, reminisce, allow yourself to feel and be fully present, knowing that the time will come when you won’t be able to. How you live the experience will determine the nature of your grief.
Peace & blessings, Sharon