Your loved one is suffering. It is coarse, raw, sweaty, smashes into shards, your fragile ego, strips naked that which you would never expose, leaves you almost unable to bear another moment of it, especially when the suffering goes on for decades without remit.
Here I am learning about limits. I am learning about grief. I am learning about emotional survival. Here I cling on, feeling far out of reach, on a vicious distant edge, that few, if any, care to know about. And therefore do not reach back to comfort or guide me.
Suffering reeks of despair. It feels endless and hopeless. It is painful beyond description. Yet there is a pathway you must keep finding, through it, in order to find meaning and restore hope.
Otherwise the suffering will consume you - initially, if not long term - unless you can find a way to see all, including loss and grief, as a path and somehow find crucial self-support and milestones to help you measure along the way.
Then you can find that it is possible to face your situation with dignity, you can find meaning and purpose, even in the most awful, indescribable circumstances and desolation even.
I am particularly inspired by Viktor Frankl, a survivor from Auschwitz, who went on to develop a whole school of psychotherapy concerning the search for meaning in life.
He confirms for me that you can attain spiritual comfort, meaning and insight from the most desperate of moments: that is his burning message and challenge, that helps me whilst living through seemingly endless, continual losses, that never completely resolve, as I live and care full time for my wife, who is profoundly ill and disabled, and has borne indescribable suffering for decades.
Who has any idea, who could possibly comprehend the innumerable losses we have both suffered?
Freedom of movement is a significant loss.
You can go out, but you have to go without the person you might want to be with. This is an adjustment. Not as wanted, expected, needed, hoped for.
People do not see you the same way.
You might be a couple, but you are a couple without the presence of your partner, if they are homebound.
You, the care-giver, you have a choice every day to make.
The option to go out, to be involved externally in other things, do the ordinary things in the community that others are engaged with, is a constant possibility, even if you do not feel inclined to follow it.
Your own confinement to the house is a choice, made purely by your decision to provide care for the one you love, though it may not always feel like a choice for some, but might feel at times more of an obligation, an expectation, a necessary need to be met.
There is a loss of sharing in the moment, even if you can include the person by videoing events, skyping or describing the experience in conversation afterwards, it is nowhere the same as being together, sharing a moment, being seen publicly as a couple or a family.
Often people, you find, are ignorant in how they just shut out the other missing person from the event or the conversation.
That is unbearably painful initially, then it becomes an emotional pain, a loss, a gnawing grief that resides deep inside, not necessarily recognised or obvious.
The person not talked about or acknowledged, can become the ‘elephant in the room’ or even no ‘elephant’ at all, simply extinct to all intent.
Visitors may seem not to realise your own stress level.
The ongoing distress of providing a high burden of physical or emotional care seems completely invisible to them.
You appear to be some kind of saintly, giving person, expected to give to them and entertain them without recognition of your need to be looked after too.
Others, in our experience, either look down upon you, insult, negate, offend you, criticise you or patronise you.
We have literally had rubbish dumped on us, in the past- for instance large baggy underwear from dead relatives or cleared out garage rubbish that someone does not want the inconvenience of taking to the dump, thinking it is some sort of charity.
You are not seen for who you are often - there is a distorted view of you, either as saint or sinner. Neither is accurate, balanced, whole. There is a loss of perspective and perception of you.
You are especially a saint to those who could not imagine doing what you do, who perhaps cannot deal with others vulnerability, frailty or need, perhaps, particularly for these many decades, maybe through feelings of inadequacy, disinterest even or just having different values.
You are most certainly a sinner, when you start to fail to comply with other people’s demands and expectations of you, especially when you begin to miss family and social engagements repeatedly and when you put the care need of your loved one, seemingly and necessarily, before them.
You are also treated like a sinner by others who make false judgments about your role and see you as someone who is somehow inferior, scrounging, not deserving of respect or equal value, not actually ‘working’.
They have no idea about what you do, how stressed or stretched you are, how skilled care-giving is, how essential your role.
I am seen as both.
And so you lead a double life, one also invisible to a large degree from normal life and normal lives. You too disappear, to a degree, change the way you live, adjust to a new way of being housebound often yourself.
The losses you accept are different to the person who is ill, but there are still many losses that you share together as well as ones unique to you, that you need to deal with repeatedly, in order to survive and more than that, find that your life, as Victor Frankl says, has the most profound meaning and value.
Greg and Linda Crowhurst
January 2020
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