Reflections on a Carer - Mandy Rumley-Buss, Associate for the Acute Frailty Network

For many years I have been advocating better care for Frail patients and felt I understood the topic quite well. I knew I also had a vested interest as my 78 year old Mother had a stroke aged 60 ,became blind and gradually over the past few years, I can recognise her as Frail.

However, when, 8 weeks ago, she came to live with the family and myself, I was unprepared for what Frailty really means for so many. We are lucky we have a close knit family and my adult children living locally are engaged in our family life. I understand the Health system but trying to navigate it for my mum has been difficult in parts. Whilst our local GP surgery has been fantastic- even to the point of phoning me to see was I Ok and sending me a pack of information as to the support available for Mum and myself as carer, I cannot say the same for other services.

Some 8 weeks later I am still waiting for a Social care assessment- I have called at least 5 times but despite my asking for them to come and see Mum, because they haven’t managed to follow up my messages and speak directly to me, we are still waiting. Given I work away from home and mum has some memory loss we need to have a sitter every day. Luckily for us Mum has some money, otherwise how would we have managed? The system is geared up to Carers if they are stay at home but not if they are working. I have asked for a visit any day and my daughter has offered to be present at the assessment but so far no response. I ask myself, How do others manage? Imagine a couple with a frail wife and an older but not yet frail husband- the stress of worrying about the finances must be immense. How can we do more to support not only the Frail patient but their Carers.

At the moment Mums memory loss has not deteriorated enough to add Dementia as a diagnosis in the mix but it is only a matter of time until diagnosis and as we wait for confirmation of what we know to be true. My heart goes out to others who have the financial worry and the loss little by little of a loved one as they become more childlike and forgetful. Mums quality of life is great at the moment and as a family so are ours but spare a thought for those isolated carers struggling with everyday life who need real understanding and support but don’t know how they will manage financially.

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