One aspect of my life I haven't discussed much is that of a carer. That's partly because it's difficult to talk about without exposing information about the person I care for, which I am keen not to do to them. But it has been a very important part of my life, and something I know many of us are doing. So I thought I'd share a little about some aspects of the caring role I've been thinking about lately. Some folks don't like the word carer, I understand the discomfort. There can be a kind of one-upsmanship in the terms carer and caree. The carer is the sane and responsible one and the caree is the sick one who needs all the help. Gone are terms of a mutual relationship and clear roles replace them. Some people also dislike distinguishing between those who are family and those who are the carers, others dislike having all the family suddenly called the carers, whether they play that role or not. I'm not particularly comfortable with the terminology myself, but I do know that I'm the family who's there on a regular basis at 2am. That makes me a carer.
Terminology aside, the person I care for struggles with feeling suicidal. As is common with many mental illnesses, these issues come in episodes. Earlier this year they became so distraught for so long they tried to take their own life. Fortunately we were able to save them. Being a carer for someone who is chronically suicidal is a particular kind of anguish. I've given some thought to the ways I've managed this painful situation. Our paths are all very individual and I'm not speaking for other carers, only myself. It may be that none of these suggestions are useful to anyone but me!
The chronic fear, stress, anguish and internal conflict involved when caring for someone who's suicidal can absolutely devour you. Emotional instability becomes normal, you swing wildly from ecstatic relief they're alive, to horror at their pain, and fury at what this is doing to you and your family. This is physically and emotionally exhausting, and signs of burn out can appear quickly. Periods of apathy and numbness intrude, physical exhaustion and mental confusion make it harder to keep going. The person you love seems to be burning alive and with them, you burn too. For myself, I develop a really short fuse. I become very irritable with everyone around me. I can't concentrate for long on anything. I cry at the slightest thing. I feel permanently distracted, part of my mind is always with the person I care for. I feel permanently afraid. There's a deep sense of terror that is always with me, lurking in my chest and chewing on my bones. I try to adapt but I cannot get used to it or accept it. There's an anguish that has had me curled up on the floor in the shower, hoping the neighbours can't hear me scream.
So, what has helped keep me going?
There is, and I say this very carefully, an upside to living on the edge of death this way. I have been unable to take away any of the downsides. My efforts to adjust and adapt have had only the most limited success over the years. So, I hold to me every sustaining thing I can find in this experience.
The truth is that anyone we love could be about to die. The truth is that we could be the one to pass away in an accident on the drive home from the hospital. It's just that none of us can really live with this awareness. So for those of us who are forced to - use it. Settle your grievances where you can. Say those things you will have wished you said. Not just to the person you care for, but everywhere in your life. Make your peace.
Treat yourself with great compassion. There is a tremendous grief in loving someone who has become so hurt and disillusioned that they seek death. The loss in a way, is as if they have died. Be very gentle with yourself, and give yourself time to grieve. Find ways to express the anguish, be those with other people, through art, journals, tears. The painful truth is that for some people, mental illness is a terminal disease. It does not take away from who they are or everything else they have done in life. Try to remember how you would treat them if they were going through cancer or another life threatening disease. They are not doing this to you, they are suffering with this and because you love them, you are suffering too. That is the nature of love.
Despair can be contagious. But closeness to death can also leave us awakened to our own life, and vividly aware of our own existence. There's an urgency in me, a restlessness with meaningless routine. A desire to cast off the grey and ordinary and to taste life. Let this dance in you! Stand in sunlight, listen to rain on the roof, smell the sweetness of the apple blossoms. You hurt because you are still alive, and still value life. Don't go down with them. Let the joy, the energy, the restlessness burn in you and give you respite from the exhaustion and numbness. Don't wait for your loved one to come back to life, show them how. These are the moments that sustain you. We more than anyone understand how brief our lives can be, and that any day could be our last. Breathe it in deeply!
Don't try to kill the pain. Emotions aren't like a menu, you can't choose the ones you want. In my experience, you feel all, strongly, mildly, or not at all. The pain is going to sit in your heart like a stone whether you feel it or not. Best to wash it out with tears and be able to feel love, joy, and peace however briefly when they come.
The chronic fear, stress, anguish and internal conflict involved when caring for someone who's suicidal can absolutely devour you. Emotional instability becomes normal, you swing wildly from ecstatic relief they're alive, to horror at their pain, and fury at what this is doing to you and your family. This is physically and emotionally exhausting, and signs of burn out can appear quickly. Periods of apathy and numbness intrude, physical exhaustion and mental confusion make it harder to keep going. The person you love seems to be burning alive and with them, you burn too. For myself, I develop a really short fuse. I become very irritable with everyone around me. I can't concentrate for long on anything. I cry at the slightest thing. I feel permanently distracted, part of my mind is always with the person I care for. I feel permanently afraid. There's a deep sense of terror that is always with me, lurking in my chest and chewing on my bones. I try to adapt but I cannot get used to it or accept it. There's an anguish that has had me curled up on the floor in the shower, hoping the neighbours can't hear me scream.
So, what has helped keep me going?
There is, and I say this very carefully, an upside to living on the edge of death this way. I have been unable to take away any of the downsides. My efforts to adjust and adapt have had only the most limited success over the years. So, I hold to me every sustaining thing I can find in this experience.
The truth is that anyone we love could be about to die. The truth is that we could be the one to pass away in an accident on the drive home from the hospital. It's just that none of us can really live with this awareness. So for those of us who are forced to - use it. Settle your grievances where you can. Say those things you will have wished you said. Not just to the person you care for, but everywhere in your life. Make your peace.
Treat yourself with great compassion. There is a tremendous grief in loving someone who has become so hurt and disillusioned that they seek death. The loss in a way, is as if they have died. Be very gentle with yourself, and give yourself time to grieve. Find ways to express the anguish, be those with other people, through art, journals, tears. The painful truth is that for some people, mental illness is a terminal disease. It does not take away from who they are or everything else they have done in life. Try to remember how you would treat them if they were going through cancer or another life threatening disease. They are not doing this to you, they are suffering with this and because you love them, you are suffering too. That is the nature of love.
Despair can be contagious. But closeness to death can also leave us awakened to our own life, and vividly aware of our own existence. There's an urgency in me, a restlessness with meaningless routine. A desire to cast off the grey and ordinary and to taste life. Let this dance in you! Stand in sunlight, listen to rain on the roof, smell the sweetness of the apple blossoms. You hurt because you are still alive, and still value life. Don't go down with them. Let the joy, the energy, the restlessness burn in you and give you respite from the exhaustion and numbness. Don't wait for your loved one to come back to life, show them how. These are the moments that sustain you. We more than anyone understand how brief our lives can be, and that any day could be our last. Breathe it in deeply!
Don't try to kill the pain. Emotions aren't like a menu, you can't choose the ones you want. In my experience, you feel all, strongly, mildly, or not at all. The pain is going to sit in your heart like a stone whether you feel it or not. Best to wash it out with tears and be able to feel love, joy, and peace however briefly when they come. 
Sarah your story is direct and deeply affecting. By 'affecting' I don't mean it's sentimental: you 'tell it like it is'.You are doing the hardest job imaginable.
ReplyDeleteBethany didn't let us know she was suicidal! She must have been an excellent actior!So we didn't get a chance to help her. I wish I had at least had the chance, that someone had told me she was suicidal, because she was the last person who was going to tell us.
We don't value you as we should. There's celebrities, footballers, and singers who just do what they love and get feted for it but you and others like you are the true heroes.Iam awed at your bravery and loving heart that knows the full meaning of love.
Thankyou Sandra, that means so much to me to have you say that. I too wish Bethany hadn't worked so hard to protect everyone else from what she was struggling with. Take care.
ReplyDeleteNot sure what I can say except take some solace in the fact that you HAVE loved ones. And remind yourself of the magnitude of the good deed you are performing.
ReplyDeleteA sense of mortality is a good thing, we can't really afford to not make use of the limited time we have.
Glad you are infused with a sense of making the most of life! I think this shows in your abundant accomplishments.
Hi Stephen, you're right, having people to love may be deeply painful, but it's still a blessing. I am very passionate about living life to the full, I've fought too hard for it to settle for mediocrity. :)
ReplyDelete