For the last three months I’ve written about different aspects of the coronavirus pandemic. For June, I want to think about how family carers have been affected by lockdown and the ongoing coronavirus crisis. The pandemic has raised so many incredibly difficult daily issues for all of us isolating at home, and those are brought into the sharpest of focuses for family carers.
The lockdown experiences of family carers
Although the lockdown is gradually easing in the UK, don’t be fooled – the emotional toll of living through something as stressful and, for many, as life-threatening as coronavirus remains immense. Thinking particularly about people who are living with dementia, if you care for someone without the cognitive ability to grasp the enormity of the situation, the pressure on that family carer to support their loved one as well as possible, to try and keep them both and others safe and healthy, is exhausting.
This, of course, is on top of all of the other pressures and stresses that family carers face on a daily basis, all of which were bought into sharp focus again with the coverage from Carers Week earlier this month. First-hand accounts of the struggles family carers have experienced are easy to find – this is one example from Suzy Webster, a friend of mine who cares for her mum:
My biggest dilemma to date. Do I take over some care for Mum to limit the number of carers coming in and out without the proper PPE??? This affect my ability to work and home school! #answersonapostcard Any advice gratefully received!
— Suzy Webster (@suzysopenheart) March 22, 2020
At 8pm my new care shift helping Mum to bed will have just finished. I will definitely be joining in #clapforourcarers #clapforNHS but also thinking about family carers who are having to cope often alone & with no support, PPE or training. #WeAreInThisTogether 👏👏👏
— Suzy Webster (@suzysopenheart) March 26, 2020
Refreshing this tweet!
Reflecting on our lockdown experience..
It’s sinking in how Mum’s assessment for care and my assessment for respite was just thrown out of the window during Lockdown.
How vulnerable we were.
How we were expected to just get on with it.
How did we cope?
— Suzy Webster (@suzysopenheart) June 19, 2020
The battles faced by family carers
Let’s face it, family carers have had a raw deal for as long as anyone can remember. We had it tough with my dad and fought numerous battles to get him what he needed over his nineteen years with vascular dementia. Dad died 8 years ago, but nothing has changed – the same battles (and even harder ones) are being replayed up and down the UK as I write this, and that shows no sign of changing.
It is disgraceful that family members who give so much to their loves ones – and in the process save the NHS and social care services from becoming stretched further both from a care and financial perspective – are treated like they don’t exist.
How often, for example, have you seen the needs of family carers highlighted during this coronavirus pandemic? We’ve heard about the impact on the NHS and care homes, but what about family carers who in many instances have lost any professional or volunteer support they might have had prior to the pandemic?
Who has talked about priority access to testing and PPE for family carers? Who has talked about ensuring family carers can get food and medication delivered? And who has talked specifically about the physical and mental health of family carers during this crisis?
Yes, there was the initial volunteer scheme to help vulnerable people, but it isn’t good enough to simply lump family carers into the bracket of all citizens. They have very specific needs, and by definition of their role have at least one other person who, to varying degrees, is dependent upon them.
How coronavirus has made caring EVEN harder than it was
When family carers have been talked about in the past it’s usually in relation to respite services or carers allowance. Well, both of these have been useless in the face of coronavirus, since it hasn’t been safe to access respite services, and carers allowance (which is already woeful), is hardly likely to cover the additional costs that many of us have experienced in our food bills and the often exhaustive searches for essential items online, such as soap/ sanitiser and masks.
I know how many hours it’s taken me to find the items our household needs, and I don’t have another adult or child in the house who is entirely dependent upon me and needs my attention even more than we need those essential household items. Moreover, I’m not isolated as a sole family carer, living with the person they care for and unable to see anyone else until more recently.
All in all then, coronavirus has highlighted what we’ve always known: family carers are never adequately provided for in government policies (no matter who the government of the day is) and ignoring them is the norm.
How you could help a family carer
I’ve been trying to help family and friends who I know have caring responsibilities during this crisis, booking grocery shops, sending links to sources of support and keeping in touch regularly. It’s been hard to do much more given the restrictions and my own family circumstances, and while lockdown measures are being eased, for many family carers their situation and fears for themselves and their loved one may mean that lockdown continues for some time in their households.
I would urge anyone reading this who knows someone who is a family carer to check in with that person, finding out:
- Do they have what they need (household items and the like) as much as is practically possible to sort out (and if they don’t, could you source it for them and have it sent to them or deliver it to them in a socially distanced way)?
- Do they know where to find support for themselves? Helplines etc. It may not be the actual practical in-home support that they need, but being able to talk to someone is an important part of coping mentally.
- What do they need in place as lockdown restrictions gradually ease? Is that visits from friends and family? Is it a care assessment? Is it professional support?
Anything that needs to be sourced (be it items or advice) often involves a lot of research, and spare time is something most family carers never have, so be that person who tries to make a difference.
By way of providing a modicum of further support, the following is a compilation of a few resources that may be of use to family carers:
Admiral Nurse Dementia Helpline: https://www.dementiauk.org/get-support/dementia-helpline-alzheimers-helpline/
Dementia Carers Count: https://dementiacarers.org.uk
Alzheimer’s Society Dementia Connect Support Line: https://www.alzheimers.org.uk/get-support/dementia-connect-support-line
Alzheimer’s Society Talking Point Online Community: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-online-community
Carers UK: http://www.carersuk.org/
Carers Trust: http://www.carers.org/
Until next time…
WANT TO READ MORE OF MY CORONAVIRUS COVERAGE?
- My March 2020 blog answered two key questions: How do we hand-wash more and how do we self-isolate?
- My April 2020 blog addressed how families and their loved ones in care homes can cope with being isolated from each other.
- My May 2020 blog gave tips on supporting a person with dementia during the pandemic.