A Dementia Carer’s Plea: Let’s Work Together

There are 700,000 unpaid dementia carers in the UK, millions more across the world. I’m one of them, caring for my wife at home since her Alzheimers diagnosis in 2013. There was help around, but in the end, like every other carer, I was on my own. Somehow, dementia seemed to have invaded my life too – it was all I ever thought about.

And then one day it occurred to me. What if we carers pooled our resources? How would our lives look then? Ours and the people we care for?

Lena - diagnosed with dementia - and her carer, Alan

Coffee and cake days

This is us, Alan and Lena Miles, pictured in 2015, 18 months after Lena’s Alzheimers diagnosis. Look pretty happy, don’t we?

And we were. True, Lena already needed lots of help. She’d get lost if she went out of the house by herself, and even making a cup of coffee was already beyond her. So I was already a full-time carer.

But here in Salford there’s plenty of support for people like us. There’s a young dementia group and a dementia champions group and a dementia action alliance. There’s swimming with dementia and dancing with dementia and coffee mornings with dementia. There’s Salford University’s Institute for Dementia, and that means lots of dementia research and dementia conferences.

If there was meeting or an event with a dementia label on it, I hauled Lena along – three or four times a week. It was good for her – good for us – wasn’t it? Ever since I met her, Lena has always shone when she’s meeting new people. And with the added attraction of dementia coffee and dementia cake – there’s always coffee and cake – what was there not to like?

 

Carer Burn-out

So it went on for a year or so, until the smiles began to fade. Well, not so much Lena’s. Mine. 

By this time, my carer responsibilities had increased as Alzheimers took a firmer grip. But it wasn’t the washing and dressing and feeding before we went out that bothered me. I could cope with all that. The problem was it felt like dementia had invaded my life too. Everything was dementia – there was no escaping it.

I met a woman who was a dementia carer. She was telling me that music played a big part in her life.

– I used to play the violin.

– Used to? You mean you don’t still play now?

– Not any more. I feel that my life’s work now is taking care of Dennis. There’s no time for music.

Admirable. Selfless. And I was appalled.

Appalled at my prospects. Most of my adult life, I’d been starting and running businesses in pursuit of dreams. My own dreams, with Lena urging me on. The businesses hadn’t always been successful, but they defined my sense of self. Did washing and dressing and feeding now mark the boundaries of my life? Was that all that life offered a carer?

And I was appalled at my own selfishness for having these thoughts. Was my own wellbeing more important than Lena’s?

Soon after that, I started opting us out of almost all the dementia activities. I guess I wasn’t cut out to be a saint.

I convinced myself that moving away from all things ‘dementia’ was in Lena’s interests. She no longer had the mental capacity to follow the endless discussions and debates – let alone contribute. And from the early days after diagnosis, she always preferred ‘normal’ – her shorthand for people and events that didn’t remind her of her Alzheimers.

But, maybe, even more important, it would allow me to recover from my own dementia fatigue. Worn out, I was getting tetchy. I would snap at Lena about the silliest things. About the keys that she’d thoughtfully placed in the cutlery drawer. About the clothes she’d unhung from the wardrobe and piled on the bed. About the missing pair of glasses that I eventually remembered I’d left out in the garden.

If I could just get some of my own life back, surely I’d relax and be a better carer. It was important. Lena’s wellbeing depended on mine.

In the doldrums

So how did our retreat work out? Not well.

I’d always meant to write down our stories. Maybe now I’d find the time and the concentration to do it. But no, I couldn’t settle, always with one ear on what Lena was up to. I’d get just a few sentences down, then break off.

I’d started running just after Lena’s diagnosis. I enjoyed the routine of training, the sense of achievement as my times improved, and above all, the me-time it bought me each day. I got pretty good at it, ran a couple of marathons – and then paid the consequences of overtraining: an achilles problem put me out for months. But even without the injury, I’d soon have needed to stop. In the house Lena was safe. But outside she wasn’t, and after the day she wandered off while I was running, I took to locking the door behind me. From that time onwards, the look on her face as I set out was always heartbreaking. She didn’t understand where I was going, or why, or when I might be back. And why would I lock her in?

But the worst thing was the question Lena asked me fifty times a day:

– What are we doing now?

I didn’t know. My stock of imagination was dangerously low. I began to dread the question as much as the one the kids always used to ask us in the car:

– When are we there?

 

Befriending - a failed experiment

It was the kids, grown up and sensitive adults now, who saw how much I was struggling.

– You’re depressed.

– No I’m not. Why do you say that?

– All you ever talk about is Ma. When was the last time you went out and had fun?

– I always have fun. We have fun together. Every day.

– We know you do. But you need a break. Have you thought about getting a carer in to help – an agency?

I patiently explained why that would be a terrible idea. Yes, it was hard work getting Lena showered and dressed in the morning. She hated anyone helping, protesting ‘I’m not a baby’. But over the months, we’d established a routine, and it was working. So how would she react if a complete stranger suddenly came in to attend to her? Besides, that wasn’t the kind of help I wanted.

– OK then. So what is the kind of help you want?

– What do I want? Time. I’d love to have the time to do the things that matter to me, a few hours not to worry about how to entertain your Mum.

– Fine, so why don’t we look at that then? There’s got to be some help you could get.

We researched it and found out about befriending. A trained volunteer would come by and take care of Lena for a couple of hours, helping her to keep doing the things she loved. What did she love? Well, there was always coffee and cake.

Soon we had a couple of interviews set up, one with a befriending agency, and the other with social services to see whether we would qualify for funding. For two sessions of two hours a week, we agreed.

It started with a couple of test runs. The nice lady from the agency arrived and off went Lena holding her hand, on a walk down to Salford Quays. So I got to work. I spent a couple of minutes relishing my freedom, made myself a cup of coffee (pouring two out of habit), settled down at my computer, and …

Before I knew it, they were back. What had I achieved? Nothing! Zilch! When you’ve lost your routines, it takes a while to find them again. Longer than two hours.

What about Lena, how had it been for her? I asked her what they’d done. She pulled a face and shrugged. That’s often the way it is with dementia. She might have had a wonderful time at The Quays, but she’d forgotten now. Nevertheless, I saw no sign of bonding between the two of them, even after the second visit, and that was telling. When Lena bonds with someone, she bonds well.

So when social services wrote to tell me that if we wanted to continue, the cost would be more than we could comfortably afford, it was easy to make a decision. Befriending wasn’t going to work for us.

Some good did come of all this though. The kids had always tried to help, but now they saw more clearly what I wanted. Since then they’ve made sure that I always get a full day off at the weekend. They take over the carer responsibilities. I’m fortunate to have them close by.

But … without wishing to be ungrateful, it’s still not the solution I’m seeking. Of course I want the best for Lena. And I want the best for me too. I know at my age, I’m supposed to be retired. But my head is telling me there are still a lot of miles in this old donkey yet. 

A moment of inspiration

For Paul, it came on the road to Damascus. For me, it was on the road to Tesco.

– What are we doing now?

– Oh, I dunno. Shopping? Do you want to go shopping?

So off we trudged. The daily routine, just to leave the house and get some exercise, whether we needed to buy anything or not. For variety, I changed the route. Sometimes it was Tesco, sometimes Lidl or Aldi. Or as a special treat, the longer walk to Sainsbury’s or Morrisons.

As we walked, I was thinking. How many other dementia carers were doing exactly the same as me? Walking to the shops because they couldn’t think of anything better to do. And that’s when the idea suddenly hit me.

I’m taking one person with dementia to the shop, but I could easily take two. And Lena would probably enjoy the extra company.

Or three.

Not four. At least not four at the same stage of dementia as Lena. I’d struggle to cope.

And if I took Lena and two others, that would free up their carers. If they reciprocated, that would give me free time too.

Suppose it was more than a shopping trip? Suppose it was a whole day of activities? If we worked together, each carer could have several days off a week. The ones we cared for would benefit too, just with a change of routine and more people to talk to. 

It wouldn’t cost us a thing.

And with several days a week off, this old donkey really could get back to work.

The idea for The Care Combine was born.

 

Further Reading

This is how we’re planning to apply the principle:  Introducing The Bine.

I mentioned Lena’s longing to be treated as normal. You might enjoy this story I wrote back in 2015. Being Normal.

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