I am a full time, unpaid carer for my wife, Georgina, who was formally diagnosed with early onset Alzheimer’s in 2012. Due to her subsequent deterioration over the ensuing years, she now has what is classed as advanced late stage Alzheimer’s.
Of the normal range of physical and mental ability that we all take for granted, she now has only two cognitive functions and she needs to be supported with these. She can chew and swallow, but needs assistance with feeding; and she can walk with personal and handling belt assistance involving two carers, of which I am always one. All other cognitive functionality, memory, speech, continence and understanding has now gone.
The impact Covid 19 is having on us
PPE is the equivalent of a brick wall between us
Care workers are finally being given the correct PPE but, due to my severe hearing loss – and I’m sure many other elderly carers have hearing loss – the introduction of face shields and masks makes personal care difficult. I can’t see the carers’ faces and I can’t read their lips, which means I lose 50% of my ability to understand what is being said. The face shield and mask are equivalent to a brick wall between us when it comes to verbal communication, and are very effective in hiding facial expressions.
On the subject of personal care, I have not been able to buy many of the personal care products needed locally and am having to resort to searching online for items, which is invariably more expensive with delivery costs.
Day-to-day ingredients disappeared
Not being able to source many of the day-to-day ingredients that enable me to create meals that Georgina can chew and swallow with ease has been a big problem. Pasta and rice were nowhere to be seen. Fresh vegetables just didn’t exist. No bread, porridge, yoghurt, fresh fruit. Despite being in the ‘vulnerable’ age range and registering with Sainsbury’s for an allocated delivery, after one delivery I somehow became unregistered and could no longer get a delivery slot.
This means that since the instruction to ‘stay home’ I have had to make almost daily visits to supermarkets to get essentials and obviously queue up with everyone else. I’m under constant time pressure while shopping as the carers are only with Georgina for a specified length of time.
The irony of social distancing is that this is already the norm for carers
If there is one irony about the current situation and the rules that have been imposed, social isolation is probably the one that affects me as a carer the least. Being a full time carer for someone with a terminal illness that still carries a social stigma, despite the enormous advances in promoting understanding of the condition, means that the day-to-day contact, communication, involvement and interaction that most people take for granted, slowly diminishes over time and eventually social isolation becomes the norm.
I have another term for it – social abandonment.
As Georgina’s condition deteriorated I took the decision to withdraw from the mainly health and social care activity I have been involved in for the past 4-5 years, to ensure she had the best support and care I could give her, without external distractions. For someone like myself, who has always been a ‘joiner’, whether it was Scouting, amateur dramatics, school governor, volunteering in the community, contributing my knowledge, skills and experience when asked etc, this has generated its own isolation, without any help from Covid 19.
Shielding is a conscious behaviour now
No one comes into the house other than scheduled carers, properly attired to attend to Georgina’s care. Two reasons, the obvious one being that I do not want Georgina to become infected by anything that could adversely impact on her health. The other being that if I were to become sufficiently unwell that I was unable to care for Georgina, she would have to go into a care home or hospital, with what I know would be the inevitable result.
Despite Covid 19 and Georgina now requiring 24/7 care and having zero cognitive functionality, she will continue to be cared for at home, by me. On 9th January 2021 we will have been married for 50 years, and no virus is going to come between us and then.