We ran our first online Carers Group using Zoom video conferencing. 10 of us managed to join in, including two new members (who are also members of our Friendship Group).
The meeting could not quite give the same feeling of connection with each other, but it was a welcome chance to see members and the carers welcomed the opportunity to share their experiences. Two people didn’t manage to join us, they will have the technical gremlins sorted out in time for the next meeting.
I have outlined the issues raised by our group members below. There was discussion and mutual support from the group. The pressures on carers and those cared for, during the coronavirus crisis, was brought to the fore by all the speakers.
Keeping in touch during social isolation
We are all trying to be creative and find the best ways to keep in touch with loved ones, and others. FaceTime had worked for some and could provide the only way to see someone in a care home. One member said they had tried FaceTime, but her mum did not respond well or interact with online images. The last time they tried, mum started to cry. Our member’s husband suggested an alternative, and it worked. The daughter sent a letter to her mum in her care home, with an old photo. Her mum enjoyed having the letter and photo, the care home staff took a photo of her reading the letter and shared it with the family. They will keep up this correspondence.
Another member started by saying his wife is not able to recognise anything on an iPad. He went on to describe their changing circumstances and said he now had “cabin fever”. The paid carers had stopped coming and he not been out of the house for 10 days. His wife’s language had practically gone and ‘sundowning’ gave rise to anger. On a positive note – he had managed to arrange home deliveries, following some work with their GP and government websites.
Our usually bubbly member told us she had been laid low for three week with some illness, but thought this might not have been pre Covid-19. Her ten days in bed had the unexpected benefit of being able to switch off from everything else. She now felt ok, her ‘time out’ had given her some extra energy to cope. She had sorted out direct payments from the council and was looking to arrange a live-in carer for her mum. It was difficult to be in contact with mum, as she became distressed by phone calls or FaceTime. When the daughter visited, mum would not leave her side for any reason. The extra energy was needed now.
The desire for fresh air
In contrast to many of our group, we have one with a fit and active husband. He has been paying attention to the news and has commented about how bad the virus is. Unfortunately, he still want to go out, as he cannot retain information. When the couple have a disagreement, the compromise is for him to walk round their garden. They have been waiting for a phone meeting with the Bexley Alzheimer’s Society, while they have been told they are moving up the queue, there are many other people also needing a formal meeting.
The story so far
A newcomer brought us up to speed with her journey. Mum had started to forget things, but dad was in denial, as a result it took two years to get a diagnosis. Recently dad had also been diagnosed with dementia, then died unexpectedly. Mum often forgets he has died. One day she got dressed for the funeral, she did not remember it had taken place the week before. Mum is independent and likes to cook on the gas cooker, this has caused a few problems. She didn’t like the microwave which “blew up” and she had given away the slow cooker. The daughter had become used to living alone, since losing her husband several years ago. She now has her mum to look after and her mother-in-law who is recovering from a broken shoulder. She is working at maintaining time for herself, to help her cope.
Lack of get-up-and-go
Our second newcomer told us her mum is deteriorating. She doesn’t want to do anything. She does not drink, prefers not to change her clothes and refuses to take them off at bedtime. The daughter is being worn down by her caring role, but has a supportive family which helps a great deal. Another group member empathised and said she had had counselling to help her deal with her issues. It had helped and she felt she was in a better position to cope now.
Care homes are not allowing visitors. A member said her mum was deteriorating. She is unable to walk unaided and the home had decided only mobile people would be allowed into communal areas. Mum was therefor isolated and not exercising at all. The daughter will be contacting the care home manager to discuss how her mum’s situation may be improved.
One of our Carers Group members had wanted to be with us at this meeting, but did not make it, we hope to see him next time. His dad passed away in a care home last week, having contracted the coronavirus. Our thoughts are with him.