The most amazing carer of all

Mary is my wife, but she is also my most amazing carer. The other day I realised that in my blogs I’ve concentrated on professional carers. Without Mary I would be completely lost, not only does she pick up all the slack but she is my rock and anchor, my best friend and the love of my life.

Mary is utterly amazing. When I totally lost the ability to stand or walk the hospital wouldn’t even let me home before asking Mary this question “are you happy to care for Mike 24/7?” It’s not that they weren’t going to supply carers to assist, in fact we get payments for 26.5 hours a week, which in real terms equates to 19 hours of care a week (care costs are higher than social care payments). But, Mary is responsible for me the majority of the time. So carers on their own wouldn’t enable me to be at home. Caring for me at home is a huge thing for Mary to undertake, it is life transforming for her. She had the absolute right to say it’s too much and after the stroke she had a couple of years ago it is hard for her. I know of several couples where they chose care homes rather than home. Let me show you the real choice she had. I said to Mary that I would be OK to be cared for in a nursing home so that she would not have the weight of my care. She was having none of that and insisted she could manage.

I am not a complete doddle to look after, however it might appear from a quick view on facebook or on a Sunday. I need someone around pretty much all the time. I can’t get things myself, like food or drink, I can’t get myself washed and dressed. I need help with toileting, let me tell you helping an adult with a bedpan is not a laugh. Even if there was a fire, I couldn’t get myself into the wheelchair or get out of the house on my own. I need help with all the basics. It’s wearing, like having a grown up baby. When you marry someone you don’t expect to be looking after them in their 50s.

I would be a useless carer, I am not patient or understanding. I don’t do well with wiping bums or clearing up sick. I coped with our children, because they were children. But adult mess is a whole other thing. Mary copes so well and takes things in her stride. That doesn’t mean she finds it easy, but she does it from love.

When we go out Mary has to overcome her embarrassment in order to move furniture or people and make room for my wheelchair. As we squeeze down roads, into rooms or find places to setup Mary makes space. That takes courage born out of love and care.

The other thing that is really difficult for Mary is giving over her husband and her home to a series of strange women. That’s how each new carer seems at first, it does get better over time. A new lady arrives and takes over my care. How difficult must that be to see your husband being so intimately cared for by another woman and yet knowing it’s needed. How tough is it to have different women coming into your home, your kitchen and taking over for an hour or so. Perhaps only the women reading this will understand that. That’s why it’s so important to find carers that connect with both Mary and I, who understand the whole picture. Carers who we get to know and who get to know both of us. Carers who don’t ignore Mary, but include her. We’ve had carers in the past who see their job as just me. They zone in on me and totally ignore Mary. They don’t last long. It might be fun for me to be the centre of attention, but it doesn’t work if a carer does that.

Illness doesn’t make for grateful patients. It’s not always the fault of the patient. Illness and pain make you grumpy. Tablets can change your character as can many illnesses. So gratitude doesn’t flow easily. Care can be a thankless task for anyone, but somehow it’s often loved ones who bear the brunt. I know I am most grumpy and ungrateful with Mary. I’m much more likely to be sour and negative with Mary than anyone else. I guess we are most real with those we love. The mask comes down. It means Mary really gets the tough end of the deal, negativity and grumps from me then later hearing me laugh and be positive with one of my carers. How unfair is that. But it’s the way it often happens.

Mary really is my most amazing carer, because she is my wife and yet has to cope with all this extra. It’s not how it should be, but Mary has taken a difficult situation and made the best of it. Over all the years of my illness Mary has been incredible. Sitting with me in my pain, praying with me, clearing up the mess, bringing me food and drink, taking me out and about, sharing together, and still loving me.