Sarah’s story: "Support from others is invaluable and you always come away feeling stronger and more positive"

Sarah’s husband Andy was diagnosed with Posterior Cortical Atrophy aged 59. She shares their story. Andy now lives in a care home.

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Sarah, Andy and Liz

My husband Andy was diagnosed with Posterior Cortical Atrophy (PCA) in 2013 at the age of 59. I had noticed things weren’t quite right about a year previously with Andy not able to differentiate between left 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 waiting for an MRI scan appointment over Christmas.

The blur of diagnosis

At the diagnosis appointment a few weeks later, I can honestly say I can’t quite recall what was said. It was all a blur, but obviously I knew it was serious. I even had trouble remembering the name of the condition, writing it down and saying it over and over again to myself until it sank in and then repeatedly googling it. I wasn’t really aware of young onset dementia. Surely dementia 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.

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.

Life post-diagnosis

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!

Hindsight is a wonderful thing

I felt I could manage everything on my own, but it may have been easier if I had got help at home earlier. I didn’t know that once you are in the ‘system’ everything takes so long to sort out, so I wish I had done that sooner. Perhaps if I had, Andy’s placement in a care home wouldn’t have become urgent but you keep holding on, thinking that you are managing, when in fact you are absorbing more and more responsibility and tasks without even realising it.

I had no idea everything would be such a battle – a word I hear frequently when families are trying to get help. It’s exhausting when you are trying to care for someone 24 hours a day, trying to get finances sorted because you have given up work and worrying about the future and what it holds. You simply don’t have the time or energy to pursue anything different or new.

Now Andy is settled and safe, I can begin to think about my own future. I married at 19 and have been with Andy my whole adult life. My recent couple of nights away in Devon on my own was a huge step for me, but it is something I will definitely do again. I have started to work for myself, so I have the freedom to visit Andy whenever I want to. I still have several years before I am of pensionable age, so I need to earn some money before then.

I volunteer at Andy’s care centre and have met so many lovely people through this, and through attending the support groups. My dog, Jack, has just passed his assessment to become a therapy dog with the charity Pets as Therapy which is very exciting. I regularly look after my grandchildren, and they bring me such joy but I am sad that Andy has not shared that with me. Next year I am planning to buy a camper van and go off exploring the UK with my dog Jack – something Andy and I had planned to do when he retired last year but of course, never happened.

Sarah lives in Oxfordshire and Andy lives in a specialist neurological care centre in Daventry. She has shared their story with audiences of trainee nurses, clinical psychologists and healthcare professionals in Oxfordshire to help increase their knowledge of young onset dementia and the impact it has on families. 