Much needed support
We were ushered straight from the consultant’s office to see a Young Onset Dementia Advisor. She showed us into an office and gave us some leaflets to take away. Looking back, all I remember of those few minutes with her is that she said she would be there supporting us and that I should consider getting our Wills sorted! Without that first contact with her, we would have been left floundering and very alone and confused.
I contacted her again very shortly after our first meeting and, at my request, she visited me at work. She mopped up my tears, patiently 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 time. I no longer felt so alone and out of my depth. It was she who prompted me to apply for benefits and to sort out Power of Attorney and our Wills straight away – it was absolutely invaluable advice.
During the first year or so after diagnosis I was still working five days a week and there was such a lot to sort out, including Andy’s work pension and benefits. I was also the main carer for my mother who was in her 90s and still 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 meeting with my Young Onset Dementia Advisor, she suggested I 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 attend support meetings.
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 attend some of the local young onset dementia groups. Through these groups we met some lovely people, in particular one couple, Pat and Liz, who became very good friends. I could always be sure of exchanging some good coping mechanisms with lots of humour added in. On occasions there have been tears, but support from others is invaluable and you always came away feeling stronger and more positive.
Finding suitable day care opportunities
Having Andy accompany me to work become stressful and I started to explore the possibility of a day centre. I struggled to find anywhere suitable as people were so much older and more immobile. After discussions with a supportive local dementia day care provider, they agreed to set up a ‘Monday Club’ for people with young onset dementia which provided much needed respite for carers and a stimulating, safe and happy atmosphere for Andy and Liz who both attended.
Andy and Sarah in 2021
One to one support brings benefits
A local young onset dementia charity provided us with a support worker called Simon. He took Andy out for three hours once or twice a week for a quite a few years and became very much part of the family. It was especially helpful once I had given up work to become Andy’s full-time carer. I needed those precious few hours to do something for myself, a haircut, shopping or sleep!
The charity also ran a wide variety of support groups and social activities as well as providing individual advice when needed. They helped me to pursue respite care and to get help from the local continence team. When the time was right, they gave me moral support in my decision to find a suitable care home for Andy. I had no idea where to start but I was eventually allocated a social worker and the relevant checks were made. Unfortunately, things by then had become urgent and Andy was placed as an emergency in an unsuitable care home. After several months he was moved to a much more appropriate care centre, where he has lived very happily and has received excellent care.
I know through chatting to other family members just how important and invaluable all these different avenues of help are. My advice to others who find themselves in this situation is to follow your heart and gut feeling, not to be afraid to ask questions or for help and to shout if you feel things are not right – I only wish I had followed my own advice a lot earlier!