Improving services for younger stroke survivors and their families

22Carers spoke of difficulty coping with theextra demands on their time. One whowas already working full-time and had afamily to look after explained that thephysiotherapist had suggested that she helpwith exercises at home when this servicewas withdrawn. Although many carersreported that they were struggling, few hadbeen asked if they were coping. Those whosought help were rarely offered any form ofcounselling:“I knew I wasn’t coping a long time ago, Ithought I would get by, but I didn’t… I’m onanti-depressants now… I was totally crackingup before; I was crying all the time…”Having free time was not easy for carers.One explained that she had becomehousebound following the stroke:“Before the stroke I went out sometimes, now Ihave a responsibility… I [used to] go shopping,out with my husband, out with my baby… allthat’s very difficult for me after stroke.”It was apparent at this stage that the strokehad had a significant impact on relationshipsbetween survivors and those close to them.A number of participants spoke openlyabout their unease at partners and childrenassuming a caring role and the impact oftheir mood changes on their relationships.Carers spoke of difficulty in coping with thesurvivor’s emotional problems.Twenty-two households included childrenor young people aged less than twenty.Explaining that a parent has had a strokeand dealing with questions fromchildren/young people of different ages canbe difficult. However, it was apparent thatparents in this study had differentperceptions of the level of information thatchildren and young people were able tocope with. One carer talked about thechange in their household:“Sometimes I think they feel it hard… he’s[father] kind of moody and snappy… it’s kindof hard for me being in between them, youknow.”Carers spoke of the difficulties ofsupporting survivors when they were havingdifficulty coping themselves:“I keep telling him that it won’t be long beforewe’re back at the football but I know he’s notentirely convinced. Neither am I.”An acute event such as stroke affects theday to day activities of the whole family.Three-quarters of the carers who had beenworking at the time of the stroke reportedthat they had taken time off work, four hadnot returned three to six months postdischarge from hospital and one hadreduced her hours.“I took time off and I’m still off just now… I’mputting in sick-lines… because I couldn’t handlework when this happened… I was running upto the hospital twice a day… It was just a bittoo much to try and work and all, with the kids,and… it was just a bit too much…”One-third of the carers who took time offwere able to take paid leave; the rest tookannual holidays or sick leave. Returning towork was not an easy option for carers,who often expressed feelings of guilt or justfeeling unable to leave the YSS alone:Improving services for younger stroke survivors and their families