How cards made a difference for Jean
Brian Hill was one of the participants in the Small Actions, Big Difference photography exhibition, commissioned for Dying Matters Awareness Week in May.
While his wife, Jean, who had dementia, was an inpatient at one hospital, Brian would go home every night after spending the day with her and make a card to bring her the following day. Soon staff started talking to Jean about the cards. Previously, says Brian, they had found it difficult to relate to her.
When we published a gallery of images from the Small Actions, Big Difference Exhibition there was a great deal of interest in Brian. So we thought we'd share more of his and Jean's story with you, as well as some of the cards Brian lovingly photographed and printed for Jean, his wife of 48 years.
"We married in 1961 on the best day of the year: April's Fools Day. We had two boys and a very, very happy married life. Jean worked for roughly the first ten years in an accountant's office, then we decided she would devote her time to her family.
“In 1985 Jean was diagnosed with Multiple Sclerosis. Then in 2000 she was diagnosed with Alzheimer's. She had begun leaving little notes about the place and forgetting things. One Sunday it came to a head. My son went to the kitchen and he came back in and said, “Mum's cooked some lovely roast potatoes, but she's cooking chips now.” So we knew then that there was a real problem.
“We went to the doctor's shortly afterwards and he sent us off to a neurologist who, believe it or believe it not, said, “Oh, there's nothing wrong with Jean. She's no more got dementia than you or I, and we might get it tomorrow.” I thought, 'What on earth is that supposed to mean?'.
"Fortunately we had to go back to the doctor’s, I haven't a clue why. What I do remember is talking to the nurse about this visit to the neurologist and how annoyed I was because it didn't make sense. She said, “Do you mind going up to the Memory Clinic?” It wasn't called the Memory Clinic but I call it the Memory Clinic.
"That's when Jean was diagnosed with Alzheimer's. Bless her, she just gently squeezed my hand and we came home in absolute silence.
"When we got home I turned to Jean and said, 'Don't worry about it, you're no different now to what you were two hours ago'.
"But I was the one that was worried; I was very worried.
"I'd been retired for four years after 30-odd years as a teacher, but I'd taken a lecturer's job one day a week at Christ Church University and I loved it. I came home one day and poor old Jean was just sitting there, crying. And I knew: ‘That's it’. There was nobody to comfort her. I just think she didn't know where she was and what exactly was happening.
"I had a heart ablation and then a gallbladder operation. My son came to pick me up from the hospital on his birthday. On the way home we decided to go for a meal to celebrate and stopped at a little restaurant. Jean was fiddling about with the knives and forks, going pale and quiet, and I turned to my son and said, 'Go and cancel it. If you have to pay for it, pay for it, don't argue; just let's get out'. We got in the car and drove straight to the doctor's and she was diagnosed with a transient ischemic attack (TIA): she was having a mini stroke.
"So first Jean was diagnosed with MS and then Alzheimer's, then the next thing was vascular dementia, then Lewy Bodies, and then, because of the Lewy Bodies, Jean was then diagnosed with Parkinson's, and then she had the TIAs. Then she was collapsing and the doctor said it was epileptic fits. Then we found out she had osteoporosis, and then things like reumatism and arthritis.
"2003 was a major turning point for us because half way through the year Jean fell down the stairs and broke her ankle. It resulted in 96 nights in hospital.
"I wasn’t happy with the way she was being treated. It wasn’t the nurses’ fault: there weren’t enough of them and I don’t think they'd ever been trained in dealing with someone with dementia. No one talked to her.
"I spent 12 hours a day in the hospital. Each day I came home and made a card. Jean loved gardening, so I used to photograph flowers, print the card and write some words to her. In the morning when I came in I’d put it on the window ledge. And the next day I’d put the next one there, and then the next one.
"And what was so amazing was: as the cards built up, the nurses would come by and say, 'Hello Jean, what card have you got today?' Not only the nurses, but the cleaners, anyone who came to the ward. The doctors, even consultants, got to hear about it. So Jean, who’d been more or less ignored, suddenly became a real person. And it made all the difference in the world.
"We were given an Admiral nurse for the next four or five years until Jean passed away. That was a big turning point for me because the Admiral nurses insisted on me going to a series of lectures on dementia. It really prepared me for a lot of what was to come.
"The Admiral nurses also helped me get in touch with social services. One care manager at social services followed us right through to the end. She became a friend, particularly in the last year of Jean’s life. She was very concerned about me as well as Jean.
"Eventually we reached the point where Jean couldn’t communicate. She never walked again after coming out of hospital. One day I realised we’d gone something like two of three days without being able to give her a drink or any food. I called the doctor and he was very good. He said: ‘She’s got to go into hospital’ and I said, ‘No, she hasn’t'. He was concerned she might have bedsores but she didn’t.
"One of our own doctors came and, bless her, she stood on one side of Jean and I stood on the other and I said, ‘This is the end, isn’t it?’ and she said, ‘Yes, I’m afraid so’. She put Jean on the Liverpool Care Pathway. We also had Marie Curie nurses.
"I’d been told that Jean would pass away in two weeks but she lived for 14 months. I got her out of bed, I got her eating soft food, I got her watching television again.
"She died at home, on a Saturday afternoon, at three o’clock. When it actually happened I had spent all day with her and I walked away for a bit. One of my sons was with her and suddenly he shouted, ‘Dad, dad!’ and I got up, went out and she’d gone, passed away.
"The carers from social services came and they were absolutely brilliant. They made us tea, went and had a look at Jean and stayed for about 20-25 minutes with us. And then they went off because there was nothing they could really do. But they were compassionate. I hear so much about carers, but mine were brilliant, absolutely brilliant.
"We arranged the whole funeral and I told the minister that I wanted to speak at the service and he was a bit concerned about it because it is a bit unusual for a husband to speak, but I did. What was lovely was we had a lot of people come and at least 16 of the professionals who’d cared for Jean."
Small Actions, Big Difference photographer Nadia Bettega's website: Nadiabettega.com