The OCN Project has compiled numerous blogs of how COVID has affected neighbourhoods, care homes and the wider activities enjoyed by those living with dementia. They have also touched on those who have succumbed to admitting their loved ones to care homes during these difficult times. This particular blog recounts a carer’s thoughts and actions following his partner’s diagnosis. It also attempts to shine a light on how COVID has impacted on their lives.
Fred and Jo have been married for 40 years. Prior to her diagnosis of Vascular Dementia
some 2 years ago, Jo was Fred’s carer due to his own serious medical conditions. The roles are now reversed.
Following diagnosis, Jo deteriorated quite quickly but then seemed to plateau. However,
since lockdown, Fred has observed further deterioration. Her speech and conversation has been affected, which, he feels is due to a lack of socialising with other people. Finding the correct word(s) to express her intent is now proving problematical for Jo. Fred says she now gets sad and frustrated because she feels he has difficulty in understanding what she is trying to convey. To overcome this, Fred has started playing a form of ‘Charades’ with Jo where he tries to guess the correct word from her actions. She becomes so happy and smiles once she knows he understands what she is trying to say.
Fred pampers Jo, it’s his way of coping. He runs her bath and does her hair. She loves the attention. He doesn’t complain when Jo gets annoyed that her clothes do not fit because she has put them on back to front, he just helps her to re-dress correctly.
Outwardly, few would realise there was anything wrong with Jo as she always looks immaculate and happy. However, inwardly, Fred always knows when she is sad – when asked, her usual response is “am fine”. Her outward veneer starts to visibly crack when mention is made of the current lockdown situation. She misses her visits to the local social club for her Karaoke sessions and cannot understand why. She also cannot make sense of Fred when he says – “it’s just you and me in our bubble”.
Before lockdown, Fred tried to find space for himself by finding a sitter whilst he popped out. He particularly misses the OCN conversation café meetings where he could meet with others in the same position as himself and listen to how they are coping and the problems they are facing. Unfortunately, those days are no more and he struggles to contain his frustrations at the isolation and the constant pressures he faces. Despite this, Fred is resolute in keeping these emotions to himself as he knows that Jo would get upset if she knew how he was truly feeling. In order to let-off steam, his coping strategy is to cook or bake and he probably produces more food than they could possibly need. Fred has also found his regular telephone checks by OCN volunteers and SSAFA have helped him to keep going.
What better way to end this short blog by recounting Fred’s night time routine – he ensures she laughs before she goes to sleep so he knows she is in a happy place.
Answers on a postcard please – Who is Fred’s carer now?
Produced by OCN volunteers, partners and participants.
This is the latest in a series of blog posts reflecting on the experiences of people living with dementia, their carers and neighbourhoods during the coronavirus pandemic. The posts are a synthesis of perspectives gathered with people living with dementia in Central Scotland over the course of the Covid-19 outbreak in 2020. These have been collected by OCN volunteers and drafted collaboratively in order to build a larger picture of the impact of Covid-19 and what the changes around it have meant for people living with dementia and their carers. It is important to highlight that in most instances these are people who will have been shielding for a significant period of time. It is clear, therefore, that more must be done to improve their access to support, community and to reduce loneliness. We hope these articles will widen understanding of the issues and draw attention to what can be a hidden problem for many people.