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Suddenly you’re a carer - but Paperweight’s ElderCare Hub can help

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Imagine losing the person you love while they are still here.

Loss comes in many shapes and forms, all devastating and life-changing for those left behind but, as Paul says about his wife, Rachel, there’s something particularly cruel about losing the person you love while they’re still physically there.

Rachel and Paul met at secondary school and married soon after graduating from university — a true love story. They settled in Pinner and both built successful careers — Paul as an architect and Rachel in human resources for a high street department store chain. Unable to have children of their own, Rachel and Paul threw themselves into spending time with their nieces and nephews, as well as volunteering at their synagogue.

Not long after their 40th wedding anniversary, they went on a cruise to celebrate. Paul had started to notice changes in Rachel’s behaviour which became more obvious away from the comfort of their daily routine. Usually outgoing, Rachel was more reserved and didn’t make connections with fellow passengers as previously. She also seemed distracted, struggling to focus during conversations and some of the activities they participated in.

Once they returned home, Rachel’s symptoms became more evident and although those close to the couple would either dismiss or make light of her changing behaviour, Paul realised there was something wrong. After several doctors’ appointments, Rachel was referred to a neurologist who diagnosed her with early onset dementia at just 63. On hearing the diagnosis, Rachel and Paul’s life turned upside down and all their plans for an active, fulfilled retirement immediately disappeared.

Faced with a stark new reality, Paul felt lost, grieving for his wife who although physically there, was only mentally present on increasingly fleeting periods of time.

None of us wants to believe old age will come at too high a price, but for many in our community, the downside of reaching old age can sometimes far outweigh the bonuses. Paperweight, the Jewish community’s advice centre, always has one eye on the needs of our community and the other on what is happening outside and how it will affect our community. As people are living longer and the health and aocial care services buckle under the strain, Paperweight has seen a sharp increase in calls from these vulnerable members and their families who do not know where to turn and consequently has launched its ElderCare Hub to help and guide them.

Retirement, companionship, new opportunities and just time to enjoy friends and family are often clouded with new health issues which force a change of lifestyle for you or a partner. These changes can extend to mobility and cognitive conditions, alongside those ‘getting older’ ailments treated with regular medications.

Factored into the impact of these changes are the considerations that, of a couple, even the healthier partner (the carer), may also be getting frail; that the home suddenly seems to comprise steep staircases; inaccessible bath tubs and opportunities galore to trip and slip.

Medical appointments stretch beyond the calendar pages and daily life is just getting tougher. There seems to be help available, but how to access it? Who to turn to for professional advice tempered with knowledge and appreciation of the community in which you so dearly wish to continue living, with as large a dose of independence as circumstances and finance permit?

Paperweight’s ElderCare Hub team know their way around the health and social care systems. They can sit down with you, in the comfort of your own home, and discuss which areas of your or your partner’s life are giving you sleepless nights.

The hub is run by people from the community, for the community. They understand the value of independence and the amenities with which you are familiar and will always factor these into any assessments.

The final word goes to Paul: “Although our family and friends were a great support, there were limits to their knowledge and practical help with such a devastating diagnosis,” says Paul. “Our rabbi came to visit us and suggested I contact Paperweight’s ElderCare Hub which would help me navigate the unfamiliar world of adult social care. The help I have received has been invaluable and has meant that Rachel has been able to stay at home and receive the care she needs as, amongst other things, I have applied for certain benefits and care assistance which I had no idea I was entitled to.”

paperweight.org.uk

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