A blog by Shahid Mohammed, BAME carer involvement lead at tide
Being under this lockdown for most of us is proving to be really difficult, as our liberties have temporarily been suspended –understandably, of course in the interests of limiting the spread of Covid 19. We are still permitted a constitutional daily walk, or a run or a circuit around the block on a bike, so not entirely living under a curfew, but day to day life is very far from normal for all of us.
However, at this time, we must especially spare a thought for our amazing South Asian and BAME family carers who, as we know, struggle at the best of times to care for someone with dementia. Especially if the loved one is living with them, in their home, with their young children – and as we know in many cases it is the daughter in law that actually provides the care for mother in law or father in law. Now, more than ever they are feeling the strain of all living together with little opportunity for any respite or break.
We know many South Asian carers only reach out for help when they hit a crisis, and even then they’re confused as to ‘who do I call?’ and IF I do ask for help, what will the rest of the extended family think about my decision; that extended family who in many cases would only intervene to criticise rather than provide any meaningful help or support to the hands-on family carer – but that’s a whole different discussion.
Sadly, there is a perception (formed often from a position of ignorance and prejudice) from mainstream Service professionals that within certain cultures there is this huge back up system of family care because, as far as they’re concerned, that’s what South Asians, and perhaps similarly other BAME communities have and therefore they don’t need to be reached’, and are ‘seldom heard’ so therefore they aren’t in need of external help. South Asian Carers as with ANY carer DO need help, perhaps even more so, for many underlying reasons.
During this 2020, COVID-19 lockdown we know South Asian carers, who are often seen as silent carers or invisible carers, are struggling even more than ever. I am hearing that some family carers cannot get hold of Personal Protective Equipment that they need to keep themselves and the person they care for, safe because the Carers local shop has run out of stock. Why aren’t FAMILY carers categorised as key-workers – are they not a priority? I read on social media that some are resorting to asking their local butcher for gloves!! One of the carers I know told me that she is having to take her mother-in-law, who has advanced dementia, out shopping with her because there is no one available who can provide respite, and she cannot leave ‘aunty’ at home because she has nursery age children at home. She and others tell me that they cannot rely of the ‘extended’ family now, because they have more of an excuse not to visit because of the lockdown – they weren’t even there to be relied on, previously, at the best of times!
It’s all well and good for those with big houses, and expansive gardens who can self-isolate and remain home with relative ease and comfort. But do we think about those carers and people living with dementia in a multi generational household, who live in small terraced, two up two down homes with a tiny back yard. Where do they go for a break – just think about their mental exhaustion?.
The issue with BAME carers is that they are tired of the same merry go round; they’re having to challenge unconscious bias or wondering if they are being judged on their actions or on their identity. Sometimes South Asian families and carers feel they are being pushed into labelled boxes as engagement policies strive to identify equality issues. There are also social challenges as well as health challenges within the South Asian community, which can make life even harder for these families and carers.
If all the above was not tough enough, then BAME groups sometimes suffer from getting specific tailored support due to cultural misconceptions, language difficulties, stigma related issues and unfortunately discrimination. Unpaid, family carers often miss out on social interaction, specifically if the carer is supporting someone with dementia, so it is so important that carers recognise their isolation and take steps to counter the loneliness. It is ok to feel lonely occasionally, but not for that loneliness to be a permanent state.
There is nothing wrong in being proud to say you are a carer, all those who have lived the journey know it’s not an easy one, but the impact on the carers own mental health often gets ignored. This is serious and we must understand the mental and physical burden on carers, who will take care of the carer if he or she is poorly and cannot care for their loved one?
A South Asian carer said this to me just yesterday “Fortunately…I was lucky that I found my way…due to understanding and general knowledge. But when the ‘chips are down’ even your own [family] turn their back on you’ I feel I’ve been under lockdown since 2012. The role has its ups and downs, more downs than ups, because you don’t want to see your loved ones in that state…”
All carers, especially South Asian carers deserve to have their voice and relate to their community, being made to feel part of something need not be difficult or complicated, but unfortunately South Asian carers struggle to find a platform that supports their voice and urges them to be part of the health system.
For far too long the diverse voices of BAME carers haven’t been heard or listened to – that sadly plays into the narrative held by many ‘that we look after our own’ which is why we don’t ask for or need help and support.
We need to change the narrative.
If you are a South Asian or BME Carer for someone living with Dementia, you can contact Shahid Mohammed, BAME CI Lead at Tide on 07841 421157 or email firstname.lastname@example.org