Coronavirus - Debra’s Story
My name is Debra and this is my blog to describe what it has been like living with a long term health condition during the coronavirus pandemic. To give some background about myself; I am a physically disabled, independent minded, single woman, wheelchair user, with 38.5 hours of support required. I live alone with a dog as a companion and have used Wigan Council’s Direct Payment Scheme as an employer for my care for the past 18 years.
I can give you an overview about some of the issues I have faced during the past six weeks, sometimes daily. First, I wanted to highlight some of the positive experiences I have had as it is important to recognise this during these challenging times.
If it wasn't for my daughter (her normal job stopped due to COVID-19), I wouldn’t be coping well. Five days out of seven, she has really been there to support me, queuing for hours to do my food shopping, and cooking a lot of batch meals which has taken a lot off pressure of me. I do also have food allergies; another hidden challenge people don’t realise. Every week she has cleaned my home to keep it virus free. She has done laundry and other tasks that are needed to run a home, taken care of my personal needs and has kept my mental wellbeing to culpable levels. Most importantly, having my daughter with me has allowed me to feel supported and this has had a positive impact on my overall mental wellbeing. I do worry that when she returns to her normal place of work that I will struggle and I'm not sure whether I will have the support I need.
My neighbour - there are few people in this world (in my 54 years experience), that will have the good heart to continue to help others week in, week out on a daily basis. I am lucky, I have a neighbour just like this. He has walked my dog daily, collected medication, brought essentials and rescued my broken-down car, collected and returned my bins weekly, as well as supporting me with cleaning up after my dog. I am thought of so highly around here, that an elderly neighbour brought flowers for me because she is so used to seeing me out and about, she wanted to help my mental wellbeing because of not being able to go out like I usually do.
However, even before the lockdown I was struggling with the support I needed. This was as a result of members of staff leaving in quick succession, with little or no notice. I found myself with a long-term open job vacancy from September 2019. During this time, I was also going through cancer treatment. Added to this, just a few weeks before lockdown my long time Personal Assistant went on long term leave. Throughout this period, I am continuing to search for extra staff. However, they arrange an interview and then don't attend or make contact. It is very frustrating that no matter how flexible you are to prospective employees, there is nothing you can do if jobs pay better across the borough.
As my daughter is now in lockdown, fortunately she is available to work for me, but she is only available five days out of seven. It would be short sighted to burn out my only source of support. Therefore, sometimes I've had to cope alone. This can entail staying in the same clothes day and night and not being able to have a shower.
Through no fault of their own, I believe the protection equipment the agency staff are issued with to enter my home is neither suitable nor safe. Therefore, to prevent or minimalize the cross-contamination of the virus from care agency staff I elected to have them here for just one hour a week, when my daughter was not here, to get the support that is essential. Due to my medical complications, I am at serious risk if I were to contract this virus. People have said that there is plenty of help out there for vulnerable people. Well yes, I've been inundated with offers of collecting medication and food and this is very helpful. But putting me to bed and giving me a shower? No, there are no offers from kind souls for that, unless for me this would mean using the pre-existing support that is in place.
With this lack of support continuing for the never-ending future, I am deeply concerned for my ability and future function. It is medically written in my records that the more pain I endure, the stiffer my body becomes, which results in deterioration of physical function and ability.
I pride myself on being of strong character. I am ordinarily able to manage my pain levels medication free. With all the extra tasks that have fallen to me, that I would usually get support for, I have experienced increased levels of pain. To keep me safe from falls I have started to take pain medication daily just to keep me able to physically function. I have never had to take so much regular pain medication for my disability before. Added to this my daughter frets when she leaves for her essential break, and we both try not to worry the other. Therefore, her mental wellbeing is being affected to.
Periodically, Adult Services carry out assessments for my support needs. I worry that if I lose any more function, but are denied the support I need, not only will my safety be put at risk, but my mental wellbeing will be severely damaged, and could result in me becoming even more isolated. Just looking at the costs of my support needs is rather soul destroying for me, as I look upon my time here as someone who can, by example make a change for the better to see every human as equal to the other. All this above means just something others cannot even comprehend. My wellbeing, safety and risk of falling comes right back to me. To say this has put an enormous strain on not only my physical wellbeing but my mental and emotional wellbeing is an understatement
This situation only makes me troubled and scared. Once this lock down ends and my daughter returns to her other job, which is 25 miles away, and I am left to cope more and more alone, in pain and danger of falling/getting injured. I feel more vulnerable because of my recent cancer diagnosis and the medication I am on which now puts me at greater risk.
My situation is unique, that added to this, I have been estranged from my family for 16 years. Therefore, my independence is extremely important to me and I hope that the long-lasting impacts of coronavirus won’t affect this too much.
No-one can understand how demeaning it is to be physically challenged that you can't get dressed or shower without help, paid or unpaid, and still feel an independent person.
To me, society lends itself to the all-important, if you can physically do things then you are more important than others who just need that little extra support
Looking to the future, as a result of austerity and reductions in funding for support and care packages, I am worried that I will lose the independence that I have worked hard to maintain. My work to continue to raise awareness of disability rights being made redundant, and as a result a deterioration in my mental health and wellbeing.
Although I am sad for the families that have lost their loved ones and the anguish this pandemic has brought on everyone, I do still hope that when this is all over, we will value human life more than we did before. I also hope that we value the gifts and skills of others, that on the surface don't seem to have magnificent gifts at all but are full of wonder and of human learning opportunity.
