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Hidden issues: When caring ends

One thing we hold in common as carers is that, someday, somehow, our caring role will come to an end. Often the end is brought about by the death of the person we’re caring for. For some, this may never be far from our minds. For others, it may never cross our minds. But for all, when it comes, it changes everything...

When caring ends - main imageOur approach to death is shaped by so many factors. It’s shaped by our worldview and by the worldview of those we’re looking after. It’s shaped by our circumstances. It’s shaped by our sense of timing. It may be coming far too early, such as if we’re looking after a child born with a life-limiting condition, or a partner battling cancer. We may even feel that it is coming too late, such as if we’re looking after a parent who is suffering and longing for the end to come.

Whether the deaths of those we’re looking after are tinged with a sense of relief that we can rebuild our lives, or overwhelm us with the feeling that life is no longer worth living, they will usually bring into sharp focus everything that we have been to that person, and everything they have been to us. While there is no more profound way to express our love than by caring, the chances are we’ll look back and wish we’d done more, been better, resented less. Even while others are looking at us and wishing they’d done as much, been as good, cared more.

Whatever we’re feeling, what matters most is that we can find a way to talk honestly and support each other, both as those we’re caring for approach death, and as we rebuild our lives afterwards.

Carers UK Local Ambassador, Pippa Clewer, cared for both her mother and her father until their deaths a couple of years ago.

Pippa's story

Pippa's mumHaving lived all over the world, my parents settled in Surrey and were determined to cling to their independence, their friends, their church, for as long as possible.

Initially I would make the journey from Plymouth to visit them at weekends. However it soon became clear that they just weren’t coping. My dad had had a series of heart attacks and mum had cared for him. But now it was her health that was deteriorating and she was losing weight at an alarming rate.

One day I arrived at the house to find that she had fallen in the night. They had called an ambulance but she had refused to go to hospital. Dad was trying to get her dressed. That was when I knew that I’d need to look after them.

We did look at the options, but keeping them together was a key requirement (they’d been married for 61 years!), and it just wasn’t offered by their council at the time. They were reluctant to leave Surrey, but knew the situation was urgent so they agreed to move in with me so I could look after them both.

One of my sons carried mum into the car, another carried her up out of the car and into bed, and she stayed in bed for four weeks. At that point, she weighed five stone and no one expected her to survive more than a few months. We fed her homemade soup and with proper care she put on two stone. We got both mum and dad well enough to enjoy days out together, to the seaside, to Dartmoor, to Plymouth Hoe.

It wasn’t easy adjusting to living together again, as I hadn’t lived with them since I was 17, when they went to the Philippines to work as missionaries and I stayed to finish my course in residential care. That training certainly came in handy. 

Dad in particular found it difficult. He built his life in Surrey and now had to leave everything for his wife to survive. He made the choice, but had periods of depression. He asked me whether the oven was gas, or whether the large window opened, as if he was plotting ways of ending his life sooner.

We did adjust though. Mum and dad were grateful to be here in my home. I’ve got five children, and nine grandchildren, and we basically enveloped mum and dad in the larger family. They could sleep or be quiet when they wanted to, or come down and join in with the family or have a cup of tea in the garden.

It was a certainly a big undertaking. I had to make adjustments to the house to make life more comfortable. I was working around the clock to provide a homely, caring environment. Even though I had residential care experience I didn’t have any nursing qualifications, so handling medication was a real challenge.

I’m not sure it would have been possible for me to do it if I’d still been living with my partner. But I only had one child, 13-year-old Jamie, living at home. He took to caring very naturally. ‘Caring isn’t a job’, he said, ‘It’s a way of life’. It certainly was. Likewise, it would have been very difficult without the support of my GP surgery. They were fantastic.

Nine months after they moved in, dad had a fall and had to go to hospital. His condition resulted in me needing to get careworkers to come in to help me look after him. That was a help but it was also stressful. I had some very good ones but also some others who were not competent or compassionate.

Now that his care needs had overtaken mum’s, the dynamic changed. Mum was independent but dad was much more open. She couldn’t imagine why I would hold his hand and talk about the old
days. Still, every night they would hold hands across their hospital-style beds, and that just made it all worthwhile.

One night I’d given dad his drink and he said that he really fancied a cheese sandwich. He didn’t actually expect to get it, and mum tutted and told him he shouldn’t ask for things like that so late at night. I said that’s why they’re with me. Dad got his sandwich and he was delighted!

When caring ends Pippas mum 2During this time, we did talk openly about death. We all knew they would both be ending their lives here, but we just didn’t know when the end would come. We talked about their wishes – what a ‘good death’ would be like. They both wanted to die at home. They worried about big things – thinking through what life would be like for each if the other died first – and they worried about small things. Once my dad called for me on the monitor, only to ask me what was going to happen to the cutlery set when he’s gone.

I’d say the whole experience was a bit like a yo-yo. There were times when it seemed, both to me and to the doctor, that mum was at death’s door. But a couple of days later she was sitting up in bed, bright as a button. That really made the emotions difficult – constantly living on the edge, I suppose.

As it happened, it was dad who died first. He had a gastric bleed, and had to go to hospital. The doctors discussed his condition with me and we agreed that we should implement a care plan to give dad a dignified and pain-free death. They asked if I wanted to talk to dad about it, and I did. I felt strong as I did this, because of all the conversations we’d already had about his approach to
death. His Christian beliefs helped too. I held his hand and said ‘Dad, you’re going to meet your Maker soon’, and he squeezed my hand in acknowledgement.

We were emotionally in tune, but I found it hard when I brought mum to the hospital to visit. She seemed more worried about her own needs and practicalities, as if she didn’t believe it would  appen, or wouldn’t acknowledge it. She wanted to get back to watch Eggheads on TV. I had to work hard, encouraging mum to talk to him. She did sing him songs and he was able to grunt acknowledgment every now and again.

I phoned as usual at 7am the next morning to see how dad’s night was. All was comfortable. Half an hour later, the nurse phoned to say dad had passed away. This was and still is the hardest emotion for me to carry, a weight to bear: I wasn’t with him. But I also know he wanted me to be looking after mum.

I took mum to see him in the chapel. Seeing his body there, she realised that she wanted them both to be buried rather than cremated.

Soon afterwards, mum started to go downhill. The love of her life was gone, but also she’d lost a series of her friends and siblings in quick succession. She got weaker and didn’t want to eat anything. We were back to the soup again.

When caring ends Pippas mum 3The photograph at the top of this page was taken on a Monday. On the Wednesday after the careworkers had left I felt I needed to stay and sit with mum. I held her head with one of my hands, and her hand with the other. I felt the end was coming. There was a gentle lapping rhythm to it, with waves approaching and fading. And then she took her last breath and was gone. My tears fell gently. It was beautiful.

After a while, I went to fetch my son. It’s my ethos to be honest and truthful, and not to hide the realities of life. We basically sat on the spare bed in the room with mum from 7.30pm till 2am when the doctor arrived to certify that mum had died. My neighbour, an old friend of the family, sat with us until 11pm.

One consequence of having mum die at home was all the practical arrangements that needed to be made immediately afterwards. I’d had time to prepare, but I remember thinking how  bewildering it would all be otherwise. One of the most difficult jobs was going through all mum’s possessions. Sorting out pictures, packing up clothes. If you’ll need emotional support at any time
during the process of bereavement, that’s the time.

I found a video of my parents, taken when they were on holiday in Australia. It was three hours long. I’m glad I saw it – it reminded me that they’d had a full life. I allowed myself to take the time to reflect – after all, that’s why we have emotions.

The days, weeks and even months after mum died were a tunnel of loneliness. For me, the whole of 2014 was a year of recovery. Physical, mental, emotional. I’d become insular. I’d been pushing myself to the limits, looking after mum’s nutrition but putting on weight by eating any old thing myself. It also took a while simply to get used to the feeling of not being called on – of being able to go shopping without having to rush back.

Then there were the thoughts of whether I could have done anything differently. While mum died almost exactly as we could have wanted, dad’s death in hospital was not as we planned – and I did find that difficult. But I did my best. There were several areas where I felt guilty, but I decided not to dwell on those and instead to focus on what I’d done well, and draw strength from that.

When caring ends PippaI’m OK taking time to reflect on anniversaries, birthdays, Christmas. Visiting the grave to lay flowers. It’s perfectly natural that these occasions should remind us of what’s gone before, but will no longer be. Again, I try to be easy on myself at these times.

As carers, we’re often use to being strong and holding everything together. If we lift the lid on our feelings we can easily crumble, so we resist opening up. But it’s so important that we have people to talk to while we’re caring, and also when caring comes to an end. 

I think of caring as climbing a ladder. Sometimes it can feel like a long climb and we need help along the way. When I’ve reached the top and have no further to go, I’ve needed help to get down and put the ladder away, gently.

Expert comment

 Immediately after a death there are so many practical things to do. You may find that it is only when these are all dealt with and people around you return to their everyday lives that you can really start to grieve.

Everyone’s reaction to losing someone is different. There is no right or wrong way to deal with your own grief – no time limits and no set pattern of emotions and behaviours that everybody follows.

As well as coping with the loss of the person you cared for, you also have to deal with the loss of your caring role. This may bring a sense of relief, and perhaps an accompanying sense of guilt. It may also bring a profound sense of isolation and loss of purpose.

Talking with other carers who’ve been bereaved themselves can be really helpful. Our online forum is a supportive community where these conversations can take place around the clock.

As well as giving expert information and advice, our Adviceline includes a listening ear service, where you can talk with trained volunteers, all carers or former carers, who are there to support you.





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