We all have a vague idea of the effects of stroke. Disability down one side, perhaps. Or difficulty with speech. But what about depression, isolation, inability to ask for help and even shame? Then there’s the burden on carers, whose lives are changed irrevocably overnight. Many of them, however, are afraid to say how tough a time they’re having in case it takes away from the suffering of a partner who has actually suffered the stroke. These are the little–known effects of stroke.
Jane and David live in Enniskillen. For some of the reasons outlined above, they don’t want us to use their real names. David was just 39 when he had his stroke five years ago. Jane says he went to hospital five times with severe headaches and nausea but he was sent home each time. He was concerned because his mother had had a stroke and both his parents had died in their early 50s.
In the end, David almost died himself. The stroke left him with Locked In Syndrome, the condition in which a patient is aware but can’t move or communicate. His life support was switched off and he was given the Last Rites.
Even though he has made some recovery, he still has a clot at the centre of his brain.
“It’s too dangerous to remove and could kill him at any time,” says Jane. “Sometimes when we’re out he just freezes, as if he suddenly remembers the danger of it dislodging and it’s all too much.”
David’s personality has changed so much he has become almost a different person. He has no patience, feels like “a freak” and has gained a lot of weight because of his fear of the outdoors. Often, he’ll say that he wishes he had died.
“I would love to have the old David back,” says Jane. “I am not the kind of person who’s given to self–pity, but I sometimes feel angry and sad about how the stroke has left us. We don’t have the relationship we had. Now, I’m just a cook, cleaner, carer, chemist, driver and decision–maker. “
With the help of Northern Ireland Chest Heart & Stroke’s local Stroke Family Co–ordinator Marie Kelly, Jane has learned that the feelings she has are not wrong. Many other carers feel the same way.
“Thanks to Marie,” she says, “I know that it’s okay to feel sad, depressed, angry and frustrated for myself as well as David. She has supported me through everything. She doesn’t judge me, whereas I worry that other people might not realise the deep impact that stroke has on everyone in the family. “
NI Chest Heart & Stroke has support groups for stroke survivors, but David doesn’t feel able to attend.
Said Marie: “It’s sometimes difficult for other people, even extended family, to comprehend the massive changes brought about by stroke. That’s why we’re here, because we know the effects and can lend a helping hand. We don’t rush people and let them adapt to what we offer at their own speed.”
Find out more about the stroke support that Northern Ireland Chest Heart and Stroke offers.