“Your nurses gave me the strength to carry on”

Benita’s husband Roger was cared for in the comfort of their home by our community nursing team. Here Benita shares how this helped them both.

“My husband Roger had been in ill health since 1980 when he broke his leg falling off a roof

The doctors named the break after him, so it became the Potts fracture. While he was in hospital after his fall he developed blood clots on his lungs, A year after his fall Roger was still in pain and later doctors realised he’d also damaged his back. He always had pain in his back after that but despite being on constant painkillers to cope with his pain, Roger wouldn’t give up his work as a carpenter as he loved it.

In 1995 he had an operation as his spine was crumbling and he was going to end up in a wheelchair. After the operation he had constant nerve pain so reluctantly he had to give up work.

It was then doctors found asbestos in his lung as well. When he had to give up work Roger became depressed as he was a man who felt he should look after his family. Some people might say it’s an old-fashioned view, but this is just one of the many reasons I love him.

Since I retired, I cared for Roger at home

As time went on his chest got worse and in July 2019 he went into a hospital – not a place he liked.

It was during that hospital stay that I was told Roger had 6 months left to live and that there was little more the doctors could do.

We went home but Roger continued to become more unwell. There were times he would fall and I’d have to ask my neighbours to come and help me get him up again, and in November 2019 he went back into hospital. He didn’t want any more treatment as there was little they could do for him, he just wanted to come back home, but I had to fight to get him out of hospital because of his condition and concern that I wouldn’t be able to manage. The hospital said they were unable to get me any help because of the holiday season. However, it was important to us both for him to be home.

It was the Friday before Christmas 2019 when he was discharged into my care, and I was told as soon as somebody was able to help me someone would call.

It was New Year’s Eve when I got a phone call from St Catherine’s saying that their nurses would come out to visit us at home

The nurses came once a day, as although they offered to come out more, Roger didn’t want them to do certain things for him so some of his personal care I’d do before the nurses came. I often knew what Roger needed before he did!

Having the support of St Catherine’s made such a difference

I was hardly going out, so sometimes Roger and I ran out of things to say to each other but when the hospice nurses came it gave both Roger and I someone to talk to.

The nurses made Roger laugh and he made them laugh too as he’d ask them questions about themselves. There was one visit when Roger said he didn’t want the nurses to give him any care and instead he asked them to sit down and chat with him. Hearing him laughing was lovely for me, and even after he’d passed away, one of the nurses told me she remembered their conversation that day which meant such a lot.

The nurses didn’t just support Roger, they supported me too

One day they arrived, and I told them I wasn’t coping well. I’d been crying so I was in the kitchen as I didn’t want Roger to see that I was upset.

I was an emotional wreck but when you’re caring for someone you try to hide it from the person you’re caring for. Being able to tell the nurses how I was feeling eased the pressure a bit as I felt alone caring for Roger.

Roger asked the nurses what we’d been talking about in the kitchen and one of them said, “Benita thinks she can’t cope,” Roger called me in and reassured me I was doing a good job, he always gave me confidence.

The nurses would tell me I was doing things right too. They would tell me I was doing great and that everything was going to be fine and that gave me the strength to carry on. It was priceless.

That reassurance might seem like a little thing to the nurses but to me it was a big thing. To know I could phone the hospice anytime made a difference as well because I didn’t feel so alone, I knew there was always someone who would help me on the end of the phone.

From when Roger came home from hospital in December, Roger’s bed was downstairs, and I slept in a chair beside him every night. During his last 4 – 5 nights, I hadn’t slept as he was so ill but I was able to call the hospice and get advice and guidance on what medication I should give him. Nothing was ever too much trouble and there was always someone to talk to me and support me.

We called the team angels and I still do

Their care was so special.

Even when Roger died on the 3 February 2020, the nurses came out that morning to wash and dress him and make sure he looked nice before our daughter arrived. Their care meant everything.

I lost and buried Roger and then we went into lockdown

I decorated my lounge at home as I’m not a person who likes to do nothing and it was the only way I could cope when I was alone in the house where my husband died. I knew my daughter and my grandchildren were okay with her family, but it was such an isolating time for me and a lot of other people.

When the Government announced you could join a bubble, I was able to join my daughter and her family. The day I was able to see my family again was full of tears. I remember it was a Saturday morning when I walked into my grandchildren’s rooms before they were up to give them a hug – that hug was so special. They told me I shouldn’t be there, but I said, “Mr Johnson has said I can so it’s okay.” They were struggling without their Grandad and then they’d lost me for a while as well. 

My garden’s been my sanctuary too. I’ve just made a raised flower bed out of wood Roger refused to get rid of because he thought it would come in useful one day – now it has. Gardening helps me block out unhappy memories and brings back happy memories for me. I find it relaxing, peaceful and calming and I’m building the garden for Roger to look down on. He knew how much I love gardening though when I was caring for him it was never a priority. I’ve been planting his favourite flowers – roses and French marigolds. Although Roger never sat in the garden much, he liked what I got out of it. Other times I read as that helps me block things out, it helps me get through life now.

I had counselling through St Catherine’s too which was fantastic

The counsellor Dennis had such a calm, soothing voice. He was very helpful, and he got me through those early weeks after losing Roger. I’d recommend the hospice’s counselling to anyone and if I saw Dennis, I’d just want to give him a hug and say thank you.

But grief is so hard

Even now I can’t cope with big crowds. I have to come home because I’m alone even in a crowd of people. Although I still celebrate life for my daughter and my grandchildren most of my life died when Roger did, and I don’t feel I can celebrate for me anymore in the same way.

Roger and I had been together for so long – he was cremated the day after our 49^th wedding anniversary.

Our first date was a disaster though! It was Friday the 13^th and we ran out of petrol in the rain. Roger proposed after only 10 days, and we got married 3 months later – we just knew we wanted to be together. A week after we got married Roger adopted my son, who I already had, and we brought him and our daughter up together. In 2005, we lost our son at 36 in a car crash with his partner. That was devastating but Roger and I grieved together.

Nowadays, I grieve on my own to protect others. Once I cried in front of my granddaughter and she commented that it was the first time she’d seen me cry. I told her I don’t usually cry in front of her, but she said, “It’s alright to cry Nannie.”

I’ve just got back from a break in South Wales which allowed me to recall happy memories

Roger and I visited the same place for a caravan holiday in 2015 and 2018 so it was like going back in time. It felt like nothing had changed. I went to the same beach and the same cafes we went to together and it was like being back there sitting in a cafe with him. Remembering those times was nice.

Now I want to repay the kindness we had by helping St Catherine’s

St Catherine’s found me and helped me when I needed it most and I want to make sure the hospice is always there for other people because the thought of them not being there when I needed them is unbearable. They made life as easy as it could be in that situation and without them, I think I would have had a complete breakdown.

I do collections for the hospice and I also walked the Midnight Walk this year with our daughter Marie in Roger’s memory

It’s the first time we did the Midnight Walk but it was something we could do together for him whilst being with other people going through the same thing.

I wish I could do because the hospice does such special work, but I don’t feel strong enough to do more at the moment, maybe in time I will, but at collections I’ve had some nice interactions with people.

When I was doing a collection in Waitrose recently someone came up to me and said, “I’ve never had to use the hospice and I hope I never will but knowing you’re there helps” and they made a donation.

Another time I was collecting at Hilliers garden centre, and a gentleman told me he knew the man who has donated land at Pease Pottage for the new hospice. Roger knew him too so that was a nice connection. He told me that he’d recently donated £9,000 to the hospice’s Charity Extra appeal towards the new hospice but he still put money in the bucket.

That just shows how much St Catherine’s means to local people.

The fact you’re building a bigger hospice to help more people is so fantastic. You can’t help make everybody well but giving people help and support at the end of life is so important to the patient and the family.”

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