I’ve been caring for David since he was diagnosed with a terminal brain tumour in September 2013 and we’ve lost so much of what we had together that a proper hug now and then would make a big difference.
David can’t walk or even stand on his own, and his right side is paralysed.
He’s big and heavy – he played rugby for years – so moving him around is physically hard.
He has to sleep downstairs, on the hospital bed that the health board provided. I sleep in our bedroom, with a baby monitor so I can see him and hear him during the night. The bed isn’t wide enough. It should be the least of our problems, but it matters. It means I can’t lie down next to my husband, even for a few minutes.
It often feels very unfair. We didn’t meet until we were both in our 50s. Both of us had made mistakes along the way and then we found each other. We had so many plans.
Then David was diagnosed with a glioblastoma and we were told he had three months to live. He’s still here but it’s been so stressful. He’s had pneumonia seven times.
I thought I knew what being a carer was like. I cared for my dad from a young age after he developed severe diabetes, and then for my daughter, who has cystic fibrosis.
But it’s different when the person you’re looking after can’t do anything for themselves physically.
David has carers who come in three times a day although not for long enough that I can get out anywhere. Twice a week they come for six hours, and then I go and help my daughter with her young son.
When my grandson was born my daughter really wanted me to be there. It meant travelling to a hospital two hours away, because of her cystic fibrosis, so David had to go into a hospice for a few days.
I was so torn. I stayed for the birth but came back as soon as I could and picked him up much earlier than we had planned.
In between the carers’ visits I do everything for David. All of his personal care. I can just about get him out of his bed, using the hoist, so that we can sit on the sofa together.
I get frightened sometimes that his personality is changing. His oxygen levels are low after his last bout of pneumonia and he seems to drift in and out of being David. I don’t know if it will last.
It’s very, very hard but I don’t think of it as a burden.
I am happy to look after him but I wish more than anything in the world that he didn’t need looking after. And I would really like him to have a bigger bed.
Lyn Roberts is 62 and a full-time carer for her husband David.
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