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.

Kid’s Stuff

Why is it that so much stuff designed for the disabled are either called by baby names or have a double use? Cot sides, drinks holders for prams and wheelchairs, hooks for prams and wheelchairs, the creams, the talc’s, the incontinence products that look like nappies, some wheelchairs that look less grown up than push chairs. What about nappy sacks to dispose of soiled wipes, or the baby wipes themselves. I could go on and anyone who has been or is disabled or has been around disabled people knows what I mean.

There needs to be new a range of disabled products. Macho wipes for men, I am being silly here of course, but you see my point. Or how about a wheelchair able-bodied people are jealous of. I know they are much better than they used to be, but most of the improvement in wheelchairs is in the chassis that you don’t really see. Or the seat that is covered by the user. The most visible bits don’t look great. Yet look at pushchairs these days. I wouldn’t mind going in one of those. They look mean, off road capable, stylish and we’ll designed. Most modern pushchairs look like they were designed by people who cared what the result looked like. There seems to be an idea that because a wheelchair is an essential mobility aid, what it looks like doesn’t matter. But, if that were true why wouldn’t it apply to glasses, another essential aid. I sometimes wonder if designers of disabled products have ever had to use them. I know my chair is NHS and someone will say it would cost too much, but really, good design doesn’t cost more.

Don’t misunderstand me. I think the wheelchair the NHS have given me is functionally brilliant, it meets my needs. I even like bits of its design. But overall it just looks like a chair with wheels. Don’t say that’s what it is, because design transforms function into something we enjoy seeing.

I said I didn’t want this blog to be a moan and I don’t. So, I have a couple of stories to share about using my wheelchair.

I have a lot of friends on Facebook that I have never met, I think I just click yes to friends of friends of friends. So, lots of people have seen pictures of me and know a little of my story, without me knowing them. One day I was being taken out to the local park by one of my carers. As we waited for the traffic lights to change a lady came up to us full of enthusiasm, she gave me a great big kiss on the cheek and said,

“How Great to actually meet you Mike, I follow you on Facebook.”

My carer looked at me and asked, “Did you know her?”

“No, it must be my aftershave.” I said.

Laughing we carried on to the park.

Another time I was in a collapse. Because my chair is so fully supported, and the straps hold me in. I can be moved along slowly when slightly reclined. Mary must operate my chair outside anyway as the collapses count as a sort of fit or seizure. So, she was driving the wheelchair slowly along. As we travelled a young girl and her Grandad walked past.

“Ah! How cute.” The little girl was referring to me.

She then matched our speed and asked Mary lots of detailed questions about me. I felt like a cute little baby in a pushchair being analysed by the little girl. Still, could be worse, she could have been repulsed by me or shouted rude comments. I’d rather be thought cute.

I used to find it embarrassing being in such a supported chair in public. I either get ignored by people who assume I have no mental capacity. Or I get too much attention by people who think I am in need of encouragement. It must be hard to hit the balance.

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Typical item that is both for baby buggy and wheelchair

You look so well

“You look so well.” Those wonderful words that everyone with a life limiting illness or any illness really enjoys hearing. She stood looking at me so sincerely, with such compassion and yet complete misunderstanding in her eyes. But, was I feeling any better, had my condition actually changed? No, definitely not.

We were in a Church meeting and everyone had been so welcoming and lovely. It had been many months since I’d been well enough to attend, and this was a special occasion. My wife and I had made it there, first of many to follow. So, it would have been churlish of me to be too upset by an ill thought out comment. After all I have suffered far worse over the years from people.

I want this story to be a celebration of life and hope. Not a walk of misery and complaint. However, to enable you to understand the hope you have to have a tiny grasp of the problem.

Disability and illness to many of us comes in two clear cut forms. Disability is missing limbs, broken backs or a really extreme physical defect that no one can miss. Illness is only worth mentioning if it’s our own, or when it’s life threatening, or at the very least a well-known and dare I say it accepted disease. By which I don’t mean people want it, just that there is a degree of understanding about it. So cancer, MS, muscular dystrophy etc. But illness and disability overlap majorly and cause life limiting conditions that affect millions of people worldwide. There are the well-known and accepted ones like asthma and the debated and misunderstood ones like ME or Fibromyalgia. Then there are conditions that cause a whole series of physical damage, provable, independently testable damage, but which can’t be easily put under one convenient overall title. That’s where I am.

I need help washing, dressing, toileting, getting food to eat, hoisting into a chair or wheelchair from my hospital type bed. I have carers every day. Basically, my life is totally limited by my condition. I don’t have the mental or physical energy to do the things I used to enjoy. Even writing is slower than it used to be, hence writing this story in sections.

How does that make me feel? Surprisingly it makes me hopeful, full of joy, optimistic, happy and positive. Ask my carers what I’m like, they will say I am positive and happy. Yes, like anyone I have my down times. But not all the time. Most of the time I am upbeat and full of laughter and fun. That’s why I often look well, I try not to look miserable and sour. Add to that the fact my condition gives me a good red colour and I know I look well.

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Care, a unique relationship

Care is a very strange thing. It’s a relationship that is very intimate. Only in medicine do we have equally intimate, yet non sexual things done to us by other people. More intimate in many ways than a husband and wife and yet obviously less so because it’s a one-sided intimacy. Think about it, who is the last person who wiped your bottom? Who is the last person who washed you or got you dressed? Your parents presumably. It’s a relationship where strong bonds of friendship can sometimes form and yet there is a professional distance. There is seriousness and fun, work and play, sadness and joy. In a way many of life’s experiences are lived out through the relationship between a carer and client.

Every situation will be different, not every client is fully aware, alert, able to process where they are or what is happening. Not all clients receive care graciously, some will be difficult and awkward. Not every carer will connect with every client. But, when it works, when everything comes together, when people connect well. Then care can go beyond being just a job.

For me I have had many carers where things have come together just right. I started out by finding being cared for the most embarrassing, awkward and difficult of experiences. Over time I have learnt to accept it and find the laughter in the embarrassment, the fun in the awkwardness and the joy in the difficulties. Not taking myself too seriously has been a great way forward. Most of us struggle with pride and a sense of self-importance that makes it hard to accept help and embarrassing to be cared for.

The one word of advice I would offer to anyone facing being newly cared for is to have a laugh. Don’t be heavy, try and look at the silly side of it all and don’t take yourself too seriously. Yes, it is embarrassing and awkward to think about. But, carers are so professional and well trained that when you get to the situation where they are washing, dressing or helping you on the toilet, you will find it is far less embarrassing than you ever imagined.

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