Amidst stormy skies.
Simultaneously feeling relieved and disappointed when your person comes through a serious, potentially life threatening infection or exacerbation.
As an end of life doula and death educator I am here to not only share with you how beautiful death can be but also how difficult it can be.
It is only when we talk about these difficulties that we can best support ourselves and others and help each of us feel less alone.
I get to witness a lot of intense moments.
Some have this idealist view of dying and what it might look like or be like for yourself or supporting someone at the end of life and that includes those new to end of life care.
It can indeed be everything you ever wished for.
The truth is that, no matter how well prepared we are and how well we are supported there can still be suffering.
Today I will not be talking about the suffering of the person dying but the suffering of the main carer.
For some death can happen suddenly and unexpectedly.
It can happen after a short illness.
For others death comes at the end of a long, progressive and often difficult illness.
Here’s the thing – if you have been caring for someone over months and years of a progressive illness such as MND, dementia, COPD, some cancers, advanced heart disease, parkinson’s etc it takes a toll on your wellbeing.
Not least your mental wellbeing.
Along that journey of long-term caring, witnessing your person’s health deteriorate there are likely to be particularly challenging times when they present with a serious infection, an exacerbation or a relapse that is life-threatening.
You shift into survival mode, your adrenaline and cortisol levels rise. You switch up. You are on high alert.
Your whole being subconsciously preparing for the intensity of grief.
Day and night.
Sometimes with people coming and going.
GP’s, hospice, hired carers.
You wonder if this is it.
If this is the end.
Is your person dying?
And nobody can give you a definitive answer.
It might last for a few hours, a few days or a few weeks.
And then, slowly, day by day, your person’s health stabilises.
Their infection, exacerbation, relapse starts to pass.
And this is where you may experience the paradox, the duality of feeling relieved that your person didn’t die whilst also feeling disappointed.
You see, at this point you are physically, emotionally and mentally exhausted.
You are experiencing overwhelm.
Coping with the rollercoaster ride of emotions that come with caring for someone with a progressive, terminal illness long-term.
Your body and mind struggles to switch off in the aftermath.
To catch up and process the circumstantial change.
The expectation of death and when it doesn’t happen you are left with the intensity of grief that now has nowhere to go..
You are wiped out.
And wondering how many more of these times of anticipated death you can bear.
Actually, no, you may well be feeling that you can’t bear any more at all.
This is suffering.
I hear you.
And I see your suffering.
And although there is sadly no magic wand that can change any of it what I can do is rally the troops to help you ride out the storm.
We can hold space for your suffering, provide somewhere soft for it all to land and hold you in a way that you wish to be held.
And, when you tell me that you wish your loved one had died I won’t judge you.
Even if you are judging yourself.
I know this comes from a place of utter despair and deep love.
With tender loving care