“I had this perception of a Victorian death house with tall walls and screaming.”
Dennis
When diagnosed with a life-shortening illness, Constance Bartholomew and her husband Dennis knew only one way to tackle it.
“We knew that we were not going to be sitting around waiting for death to come,” says Dennis.
The couple met 50 years ago when a 21-year-old Dennis was walking past the Department of Health and Social Security on Blackfriars Road on his way to a further education class when he caught sight of Constance.
“It’s been a fantastic time,” he says of their half a century together. The couple have two children, a son and a daughter and grandchildren.
Six years ago, however, a fit and active Constance started to feel tired and dizzy.
“Constance became unwell and was finding it difficult to be steady on her feet,” Dennis recalls.
“We went through every medical facility in Croydon. I remember I noticed her signature had changed, her handwriting changed, that was a shock.”
“It’s been an exploration of the health service of this country because there are things people just don’t know.”
After visits to the Dementia Clinic and St George’s, the couple found themselves at the Maudsley psychiatric hospital.
“They threw us out after 15 minutes and said ‘why are you wasting our time’,” Dennis says with a laugh.
When Constance was eventually diagnosed by a neurological team at St George’s with Parkinson’s, the couple burst into tears. Shortly after, the diagnosis was changed. Constance actually had Progressive Supranuclear Palsy (PSP).
“It’s an even worse condition but surprisingly we didn’t cry,” Dennis says. “We were done with the crying by then.”
PSP is a rare neurological condition that can cause problems with balance, movement, vision, speech and swallowing.
“When I saw her in hospital I thought she was dying.”
“It’s been an exploration of the health service of this country because there are things people just don’t know,” Dennis explains.
Not long after the diagnosis, Constance’s liver collapsed and she spent a few weeks in hospital before a successful transplant. The couple continued to travel, including a trip to Ghana with Constance in a wheelchair.
Last year, however, her liver failed again and she spent four weeks in hospital while they successfully stabilised her.
“The guiding philosophy is rather ‘this is what you can do and this is what we can provide.”
“When I saw her in hospital I thought she was dying,” he says. “Up until then I could deny the reality of the situation. When Constance came home, everything had to change.”
“I had to appreciate we couldn’t just live a slightly lighter version of our previous life. But rather we were in full mode of her current situation.
“She is unable to walk, to articulate, her eyesight has failed. It’s a terrible condition. I wouldn’t wish it on anyone.
“But she is fully aware. There is absolutely nothing wrong with her memory or comprehension. If she says that 20 years ago she saw you in Streatham High Street wearing a red top, then do not argue.”
“If she says that 20 years ago she saw you in Streatham High Street wearing a red top, then do not argue.”
Faced with a new reality, Dennis reached out for help. He was referred to St Christopher’s but was initially hesitant.
“Constance didn’t want to come and nor did I. I had this perception of a Victorian death house with tall walls and screaming.”
However, after someone from St Christopher’s reached out for a second time to invite them to visit, the couple decided to come and take a look.
“From the first minute, our view changed completely,” Dennis says.
“What strikes you immediately is the volunteers who are dressed so brightly and everyone is extremely friendly.”
After that initial visit, Dennis and Constance now return every week, often with family. They’ve accessed a range of services, including massages from the Complementary therapy team, music therapy, and a Neurological support group.
In fact, their experiences mean they think the hospice should be renamed St Christopher’s Wellness Center.
“I don’t think once the discussion has been focused on just delivering end of life care,” says Dennis. “The guiding philosophy is rather ‘this is what you can do and this is what we can provide.’ It’s a cool place.”
“We can’t just sit at home, that’s just bringing on death, sitting and waiting.”
Although Constance’s condition has worsened, the couple are adamant that they still won’t be found sitting at home.
“I used to get quite jealous when I heard someone was under house arrest,” jokes Dennis.
“But no it’s horrible, it’s prison. Even if we just go out to drive to the petrol station, that’s great. There has been debates where Constance has got quite upset and angry with me because we haven’t gone out if it’s raining or something.”
In their plans is a trip to Scotland or North Wales to spend a week away, something they haven’t been able to do since last year.
“As long as Constance wants to go out, we’ll be going. We can’t just sit at home, that’s just bringing on death, sitting and waiting,” Dennis says. “We’ll be going out, getting into the beautiful fresh air.”
You may also be interested in
Creating a Different Tomorrow
Seven aspiring leaders in palliative care begin their journey through our new leadership programme
Emilia inspired to run the London Marathon in memory of her ‘Aunty’ Gerry
First-timer Emilia Deefholts is proof positive that being a novice is no barrier to smashing your marathon running and fundraising targets.
Our young changemakers explore care in all its forms
We reflect on this year's summer school for young people interested in social change.
