Peter, 68, lives in Southend-On-Sea with his wife Susan, also 68, who was diagnosed with Early-Onset Alzheimer’s in 2016. Supporting with all personal care, medication, nutrition and hydration, all domestic duties around the home and arranging appointments, Peter is Susan’s full-time carer.
After it was confirmed that Susan’s declining symptoms were a result of Alzheimer’s, Peter felt lost, alone and in shock with his wife’s life-changing diagnosis. Peter tried his best to manage but began to struggle without support as Susan’s symptoms gradually begun to progress.
Peter tells us how Carers First has helped to open up the support available to him, enabling him to access care for his wife, have some time for himself, and meet other carers who understand what it’s like to be a carer, sharing tips and experiences to help each other.
“When Susan was first diagnosed, it was like a bombshell had hit. After a few visits with a consultant, Susan was prescribed medication and we were told there was nothing more they could do, and we needed to self-manage.”
“As we walked out of the appointment, we looked at each other with a look of; So, what do we do now? Where do we go from here? We both felt lost, left in the dark to fend for ourselves with no knowledge to help us in this new journey we found ourselves on.”
Peter first reached out to their GP for support when he felt he needed some support with caring for Susan. The GP referred Susan to the Dementia Intensive Support Team (DIST) who were able to support Susan with her Dementia symptoms, as well as Peter with a referral to Carers First.
When Peter first spoke to the team at Carers First, he was finding his situation very overwhelming, and was starting to feel trapped. Being unable to leave Susan for long periods, Peter wasn’t getting the opportunity to see friends or socialise, and if he did go out, he would worry about her.
Carers First were able to help with referrals to Social Care, a GP Social Prescriber, with Peter’s Carer Support Adviser, Emma, regularly liaising with Susan’s Dementia Navigator to keep them informed of the support she provides. Susan now has a daily care package, receiving 1.5 hours of daily support which also provides the opportunity for Peter to have some time for himself and to pop out if he needs to. Susan is now also regularly attending a Dementia club which she enjoys, and which also gives Peter a few more respite hours.
“As soon as I was in contact with Carers First the ball started rolling. Emma has been brilliant. We talked about my caring role, and the support I needed, and everything just started to happen.”
With the time Peter has for himself, he now regularly attends his local Men's Morning Meet' in Southend-On-Sea and enjoys meeting and talking to other male carers, sharing tips and experiences.
“It’s good to talk to others who understand your situation. The group is friendly, and we chat over a cooked breakfast. It reminds me that I am not alone and there are others in similar, sometimes more complex situations.”
In Peter’s opinion, carers should be identified and informed of the support available to them at diagnosis – being informed of the support available to patients and their carers at the first opportunity.
“Up until recently, finding out about support has been from the sheer luck of talking to people, no information has been provided on the support available to me as a carer for my wife with a degenerative brain condition by the professionals we have encountered, up until now.”
“Carers First and The Dementia team have helped to turn things around and I now feel recognised and supported. I didn’t realise all this help was out there, but because of Carers First I’m now receiving the support I need.”
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