Blog by Wendy Burt, Representative Body Co Chair – Family and Friends, and Paula Strike
I have 2 amazing sons who both happen to have a learning disability, I have been so thankful during this pandemic that they still live at home with my husband and I, we haven’t had to be separated and unable to see each other as many families who have loved ones in supported living or residential care have found themselves.
The thought of not being able to physically see my sons for 3 months would have been an incredibly difficult challenge for me, it’s so good to hear that as the lockdown is easing families have been able to spend time with their loved ones again.
My sons have enjoyed their time in lockdown, as long as the Wi-fi is working and we can buy their favourite foods all is good. However I have been thinking a great deal of those families whose loved ones still live at home and who require a lot of care and support their lives have probably been very different to ours.
During this pandemic we have heard a lot about the heroes in our community, the key workers going to work everyday so that we can have food on our tables, the NHS staff looking after our sick, care workers taking care of the elderly and disabled. However the most forgotten people are those families who are now caring 24/7 for a family member with a disability with out any let up. They are getting no breaks, they are not being called heroes for what they are doing, but believe me they are absolute heroes.
These families didn’t choose to have a family member with a disability but although they may not have chosen this life they wholeheartedly get on with it rarely making a fuss.
No furlough breaks for them no time to spring clean or bake cakes – they are getting on with what can be a very challenging life, the difference now being they have no respite from it, no school during the day to give them a few hours of peace, no day opportunity or trip out with a PA to allow them time to catch up on stuff in the home.
Many of these families 4 months on are still in a state of limbo not knowing when life will return to some kind of normal, whatever normal may become.
A wonderful friend Paula Strike who cares for her son has also been reflecting on life in lockdown which I would like to share with you:
“I feel strangely vindicated for my years of moans, groans, tears, frustrations, anger, resentment, late night eating, drinking a bit too much & feeling sorry for myself…
You look around and see what the Coronavirus Pandemic has caused for peoples lives everywhere; the job worries, the health worries, the inconvenience, the financial worries, family arguments, the insecurity, the longing for better times, the frustration of bureaucracy and authority…..Family carers live this life day to day, everyday, Coronavirus or not!
Also the home education, activities to keep them occupied, feeling trapped in your home, lack of a social life…..Welcome to our world!
The general public can’t live like this forever. The one saving grace for family carers is the love that they have for the person they care for. But it’s tiring, it’s underfunded, carers are financially underpaid and emotionally under supported.
I feel the authorities going forward should consider not whether the caring family are doing ok but if they did not do that role what would happen to their cared for person. Families should be offered counselling before crisis, early access to mental health support, sibling support, proportionate financial support to the role they do and much more of a voice in the decisions made about matters that ultimately affect them and their loved ones.”
Thank you Paula for allowing me to share your thoughts here. All that is left for me to do now is say to those of you caring for a family member with a learning disability you are doing an amazing job I want you to know as one of the elected family reps on the representative body of Learning Disability England I along with my colleagues will continue to try and ensure that the experiences and voices of people with a learning disability and their families are heard and influence the landscape that emerges as we come out of lockdown.
Paula Strike Wendy Burt