Having a disability & being a parent carer during Lockdown

 

This pandemic has certainly changed the way we live lives and how we care for people and family around us that are vulnerable and living with any long-term medical condition. 

As a family, It all started around the middle of February 2020 for us as we knew things were not going well from this new virus called COVID 19 and that it had hit many parts of the world and especially with people dying in China and Italy. To protect our daughter, my wife & me went into a total no contact and shielding from the end of February 2020.  So this meant no going out to shops and staying at home and shielding one another. It was difficult to start with it but as time got on we came to terms with this new life and knew who to rely on for help and assistance. 

Sad this got many of the health services to come to a halt that was caring and supporting our daughter and for over two months we had no help. We were in crisis as we needed something for our own sanity and health - as caring for our daughter needed 24x7 monitoring and care and we as a family were shattered and broken. 

This halt put a lot of strain on my health and my MS as this involved constant support and work around my daughter's medical needs. My MS symptoms were getting worse and my foot drop was getting bad. I guess with being a father you just have to carry on with life and look at priorities and that means ignoring your own health which is not right.  

It took a while for medical services to access their needs / to evaluate the work they were doing which was safe for them as well as for their patients and work the best way to support the vulnerable. Finally, we were given some light through assistance from CHAS (our daughter's Hospice service) who came home which was a blessing, and along with this, we had our resumed NHS Outreach services start their shifts. We cannot thank them enough. They were a lifeline in those days and still are right now. 

The Scottish government on the other side was issuing updates on the zones of lockdown and who could travel from one tier to another. This meant we had family who regularly came on the weekends to start shielding themselves as they were in a bracket of people that needed to protect themselves. 

Guidelines from the government which now has become a part of normal living were: 

• wear a face covering 
• avoid crowded places 
• clean hands and surface regularly 
• stay 2m away from other people
• self-isolate and book a test if you have COVID-19 symptoms (meaning having a new continuous cough, fever or loss of, or change in, sense of smell or taste)
• download the Protect Scotland contact tracing app (Only for Scotland)

The year 2020 has been the worst for us as a family. I remember going to a shop at the start of February 2020 and then finally did go to the shops when the government opened timings for carers and health workers to shop for the vulnerable (That was around the end of 2020). That was a shock and the distance signage all over the place. This still doesn't mean we are going outside as for my daughter's health and mine we are trying to be safe as much as possible.  

Now with the recent variants out in the open, a report in the latest British Medical Journal (BMJ) 6th March 2021 (372:337-378 No 8282 | CR ISSN 0959-8138) by Kemi Badenoch says that the second wave has hit the Pakistanis and Bangladeshis in England harder. The report carries on by saying the death rate rose by 124% and 97% respectively, amongst men and women from Pakistani backgrounds. Largely the fact remains that these communities are at higher risk of infections, risk factors such as household composition, geography, and occupation may explain higher infection rates amongst these groups. 

Keeping this in mind and our family certainly has a mix of Asians (myself) and my daughter being a mix of white / Asian & living with a medical condition can be at high risk. It's a saying that we need to wear the oxygen mask first before we save the other around us and that is a very important scenario for me. I know it's not easy as it involves a lot of dedication towards eating well, sleeping in time, exercising, and resting your body well. 

So what has this lockdown given us to remember: 

• As a society, the concept of being isolated has given a new meaning and generally, now people have come to know what some families have had to live with this isolation and a confined space alongside looking after a loved one. It is very difficult. 
• The use of technology has certainly made this world very small. Especially video conferencing to medical professionals has been a blessing. This means my daughter has less risk of traveling to places where she could be prone to various viruses. 
• I read somewhere that we as a society still largely portray disability to be a sad and bad thing. Stories are told through the lens of abled-bodied writers and personal stories are written for readers to feel sorry and have pity on the disabled person. With this lockdown, so many people have faced problems and disabled people have to fight for getting the most basic right - us parent carers have had many speak up and campaign to the government about those unpaid carers looking after their loved ones in lockdown and much living life under the breadline, to raise campaigns for our daily struggles can be heard.
• The support system that was created for so many families of children with complex needs has come to a standstill and actually many broken. 
• We have come to learn to appreciate small changes and never take life for granted. 
• Lockdown opened up many new avenues for people but for families like ourselves we are happy that we have each other well and safe 

As the world around us slowly starts coming out of lockdown, many people are enjoying getting back to doing the things they’ve missed so much over the past few months: spending more time with loved ones, barbecues in the garden, hitting the shops, perhaps even taking a trip to a nearby destination.

But for many families who care for people living with a complex medical condition - life certainly is not the same as more cuts to the social system are due in the coming future. We as a family can just keep hopes high that things may just get back to what they used to be but lockdown is a continuing, grueling reality, with no end in sight. 

So my take will always be “Stay home and stay safe”. 

Do share your lockdown stories and leave us a comment of hope - 

we need that support !!