“100 out of 100 relationships that involve caregiving fail.”
It’s not often that I get involved with campaigns or causes on social media, but a chat show host (Dr Phil) in the USA has aired some views which have made my blood boil. His programme last week was about a young man left paralysed after a spinal cord injury, and his girlfriend. The program explored issues in their ‘interabled’ relationship and began with Dr Phil asking “You’re a young, single, attractive female. Out of all the people that you can choose, why choose someone in a wheelchair?”
This one comment alone had me raging, stamping and screeching in horror. How very bloody dare he?
He made it very clear that no relationship could possibly endure both love and being a carer. He asked the girlfriend to make a choice, and told her this:
“You can be his lover or you can be his caregiver, but you cannot be both. 100 out of 100 times, this won’t work.”
So let me get this straight: Apparently I can’t possibly have a normal, loving, intimate relationship with my husband whilst also caring for him? Is that because he is disabled? Because he is somehow less of a human? Or does this apply to everyone? Surely being in a partnership means that you share things; that means sometimes you are shouldering or supporting one another or coping with the burden of the other’s pain. You do things for each other; something as simple as picking up medicines and groceries when the other one is sick, or changing the bed sheets in the middle of a feverish night. These are things, acts of both care and love, that you would do for your person.
The fundamental difference is that I am doing things for David that he cannot do for himself. He needs help with almost every aspect of his life. From the moment we wake up, I am his hands and his legs. It is sometimes exhausting, occasionally dull, often excruciatingly busy…frustrating, relentless and back breaking. Some days it makes my head explode; that’s usually because of the ridiculous number of things to fit into any one given 24 hour period, rather than actual CARE as such! Hard physical work, long days and even longer nights when things don’t go to plan – so why do I do it?
Quite simply reader, because I love him. True, unconditional, heart-exploding love – and that means I involve myself in his care and for the majority of the time, I am his primary caregiver. And I chose that path; it was never forced on me. I made that decision because I want our life to be as normal as it can be; I don’t feel like his carer when we’re just getting on with day to day life. In fact I don’t feel like his carer at all; I think of it as helping him to get stuff done. Ok, so some of the personal care like toileting or dressing him is not something most people do for their significant other, but I don’t honestly see it as odd or unrealistic to undertake those tasks.
But we have the complication of his spinal cord injury, and that requires 24/7 care to deal with day to day living, his personal care and the emergencies as and when they arise. If I wasn’t prepared to take on all or some of his care, then we would share every moment of our lives with another person there to be constantly available for his every need. I understand this is not how everyone would choose to do things, and for some people, being their partner’s carer is not the way they want to live. Some people prefer to keep those aspects of their lives entirely separate, and I respect their choice.
But it works- for us. Our lives are busy and in between David’s sailing, the various things he’s involved in, time for his personal care and going to the gym, there aren’t many hours left! And I can’t look after him every single hour of every day, so we find time for me to have a break from being his caregiver or I go away so that we both get some space. And that helps to keep our husband and wife relationship normal. We catch up on our day of an evening; whilst I’m cooking dinner we’ll chat through what has happened – just like anyone else would. And we’ll go to bed as husband and wife; although I have to physically put him to bed! Some nights he will wake me several times as he’ll need to be repositioned, or in pain or something is wrong. But mostly things are pretty normal and we behave just like anyone else would under the cloak of darkness alone in their bedroom….
I’d be lying if I said it was all multi-coloured unicorns and shooting stars in our marriage; is anyone’s relationship perfect? We argue, we bicker, we disagree. There are days when the continual “being needed” can wear thin, but on the whole we muddle along pretty well. I make lists of tasks and chores, we work together to prioritise our days and we communicate A LOT so that we make the best of our time getting things done and then the down time when we can just BE.
We’re lucky to have (and again, I realise this is not possible for everyone) part time carers who don’t live with us but have scheduled hours. This means I can get a break, do my own work, see friends or just relax (allegedly; still working up to that one!) while someone is available to look after him. He doesn’t need constant microscopic scrutiny, but someone needs to be around to facilitate things and be there when he needs assistance – which he is very capable of directing! He is not a burden on me. He is my person, my soulmate and my harbour; and if I choose to be his lover AND to be his carer as well, I shouldn’t have to justify it to some ill-informed talk show host on the other side of the planet. The comments made in that show reinforce the perception that a disabled person can bring nothing to a relationship, especially if they need additional care. What kind of message is that sending?
Our relationship could fail in exactly the same way as any other; the fact that we share our lives slightly differently, I believe, makes us even stronger in our partnership. At some point in our lives, we will all probably have to care for someone; be it a partner, a parent or a child. Our relationship is different in that we are lovers too, but should that mean it is any more likely to fail?
So thanks Dr Phil, but I’m pretty sure you’ve got your stats wrong on this one. Maybe 1 in a 100 will fail, maybe more. Who knows? But please don’t think that EVERY single one of these carefully nurtured relationships are headed for doom from the outset. Some of us have found a balance in our happy place between loving and caregiving – and we fully intend to stay there.
(If you are on Instagram or Twitter and want to read more, look up the #100outof100 tag and see what others have to say! @meandmillie)