Page 18 - TalkingCareMagazine_Online Issue4
P. 18

                    Sarah’s husband Andy was diagnosed with Posterior Cor cal Atrophy (PCA) four years ago at the age of 59. Sarah shares their story:
‘I had no ced things weren’t quite right about a year previously with Andy not able to differen ate between le  and right and unable to correctly lay the table. I suggested he should see our GP, which resulted in a referral to Neurology about four months later. We then had an anxious four or five weeks wai ng for an MRI scan appointment over Christmas.
‘At the diagnosis appointment a few weeks later I can honestly say I can’t quite recall what had been said. It was all a blur, but I obviously knew it was serious – I even had trouble remembering the name of the disease, wri ng it down and saying it over and over again to myself un l it sank in and then repeatedly googling it! I wasn’t really aware of young onset demen a. Surely demen a was for old people like my mum who I’d been regularly accompanying to the GP and memory clinic. But here was my husband, 35 years younger than her but scoring much, much worse than her on the Addenbrooke’s test.
‘We were ushered straight from the consultant’s office to see Emeline, a Young Onset Demen a Advisor from YoungDemen a UK. She showed us into an office and explained a li le about the charity and gave us some leaflets to take away. Looking back all I remember of those few minutes with her is that she would be there suppor ng us and that I needed to get our Wills sorted! However without that first contact with YoungDemen a UK we would have been le  floundering and very alone and confused.
‘I contacted Emeline very shortly a er our first mee ng and at my request she visited me at work. She mopped up my tears, pa ently listened to my fears and gave me some very sound advice and support. I felt she was my new lifeline who I could call on at any  me and I no longer felt so alone and out of my depth. It was she who prompted me to apply for Disability Living Allowance (DLA) and to sort out Power of A orney and our Wills straight away – in hindsight absolutely invaluable advice now we are a few years down the line.
‘During the first year or so a er diagnosis I was s ll working five days a week and there was such a lot to sort out – including Andy’s work pension and DLA. I was also the main carer for my 94 year­old mother who was s ll living independently in her own home, plus we had our normal family life with our three sons.
‘A year or so later following another one to one mee ng with Emeline, she advised me to re­ think my work / life balance in a way I would never have thought of. I approached my boss and asked if I might reduce my days to four in order to a end support mee ngs.
‘By now Andy had started accompanying me to work (with the permission of my boss) as I could no longer leave him at home alone all day. My new hours were agreed and we started to regularly a end some of the YoungDemen a UK groups. ‘Through these groups we have met some lovely people, and in par cular one couple, Pat and Liz, who have become very good friends. I can always be sure

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