During the pandemic, there has been increased responsibility on unpaid family carers to deliver care to their loved one.

In many cases, day services and 1:1 support has stopped during lock-down, so caring at home has been required for 100% of the time. Many carers of adults with learning disabilities are at home 24/7 with their family.

This has increased the pressure on families and carers, and here are just some of the difficult situations we have heard from families we support:

  • carers are balancing work and care giving
  • some are balancing care of numerous people including elderly parents, young children and an adult with a learning disability
  • some have had to ‘shield’, meaning they have been restricted to inside their homes with limited activities or resources to entertain their loved one
  • elderly carers with care need themselves
  • in some cases adults have moved out of supported living to be back home with family during this pandemic, which has changed routines for everyone in the household.

In many cases, carers have risen to the challenge and shown incredible strength as always, to tackle these caring challenges. But often the financial implications and the mental and physical health of the carer, can go unnoticed.

We want to take this opportunity to say we are here and at the end of a phone. We are happy to be a ‘lending ear’, a shoulder to cry on (albeit virtually, for the time being) and to offer practical support, resources and advice.

Members of our Carers Team are here to support you.

Supporting you remotely

During this pandemic, we have set up our carers team to work remotely from their homes. The only service we cannot offer is face-to-face meetings, however these can be arranged over Zoom. We have been contacting our most vulnerable carers weekly and are still receiving referrals for new carers to our services.

We have continued to receive referrals and support families with Emergency Plans, Health Passports and future planning. We are delivering online fun virtual sessions to carers and those they care for over Zoom. These offer something for everyone, from bingo, quizzes and coffee mornings, to ‘dancercise’ and digital doodles.

We have moved some of our Carers Outreach Groups to regular WhatsApp video calls, meaning the groups get to have a regular catch up. We know digital sessions are no equivalent for the face-to-face sessions, but we have received great feedback and are watching relationships blossom.

If you are interested, please get in touch – we love to welcome new people and to link you and your cared for adult with others in similar situations.

Here are some quotes from those already coming along to our virtual groups:

“I’ve enjoyed the sessions by the Carers Outreach Project, especially the painting activities, I never painted before and its been a new outlet and discovered something about myself. Making new friends has been fantastic , I have enjoyed the company of group members and staff from COPe. Since Lockdown myself, husband and son have enjoyed the weekly Bingo meet up on a Tuesday and look forwards to it every week.”

“Issac really looks forward to the Bingo/Quiz morning every Wednesday. It’s nice that everybody can keep in contact so they aren’t isolated in their own bubbles. It is good to connect with other parents and members. This activity has been an anchor in Issac’s routine since lockdown. Isaac prepares himself for bingo getting pens, Bingo Cards and a drink so he is ready to play.”

“Really enjoyed my hour of escapism!”

“Thanks for a fun afternoon. Can’t wait for next week.”

“Thanks so much. She laughed and smiled. It’s been very difficult for me caring for both of them. But I’m so grateful for services like yours.”

Planning ahead 

I think one thing we have all learnt from this pandemic is that it is always important to plan for the future, for both ourselves and those we care for.

As stated in ‘Caring behind closed doors’ – a report from Carers UK, only 1 in 6 carers have taken part in a conversation about future planning and discussed their wishes for when they are no longer able or willing to provide care. The concerns about the lack of information and wishes shared with others and the arrangements in place has only been further amplified by the pandemic. Many carers have expressed fears that their loved one could be admitted to hospital all alone, or could be left at home on their own if they were to be admitted.

It is one of the hardest conversations to start but we are here to help with those discussions and can complete plans that can be shared with other family members and health care professionals, so you can rest assured that your wishes, as a carer, are out there for others to follow.

We won’t judge whether you think you are starting this too early or have left it to the last minute. We want to hear from you and support you.

The key documents that I am referring to are:

  • Health Passport: This contains basic information about the adult/child with learning disabilities; from how they communicate, what they like and don’t like.
  • Emergency plans: These contain some of the information from the Health Passport, but also details around ability to be left alone at home, care and support needs, life skills and risks and what would need to be addressed in the case of an emergency.
  • Future Planning: There is no such thing as a ‘future plan’ document but we will support you with planning for the future, which can include respite care and living arrangements.

The future for unpaid family carers

In the future, I would like to see:

  • Raised awareness of ‘future planning’, for this to become part of a natural journey for individuals with learning disabilities and their carers. We see many transitional services but there isn’t a natural journey for ‘planning for the future’ and ‘life after caring’. Something we will be working on is developing more interactive sessions for future planning and specific support groups for carers during this transitional period.
  • More support for carers, whether this be financial or respite services, to support carers with caring at home or accessing work.
  • Raised awareness with employers over the challenges of balancing caring responsibilities and work.

If you are a carer who is looking for support in future planning, or if you are interested in attending our virtual Carers Outreach Groups, or if you just want to speak about your situation and see what help and support is out there – please get in touch with us. You can read all about our services on the Carers section of our website, where you’ll also find our contact details. Please also take a look at our resources for Carers to help you through the pandemic.

You can get in touch with me on email: carersprojects@sheffieldmencap.org.uk.