December 15, 2020

The Effects of Coronavirus on Our Family – By Penny

Letter written by Mum, Penny, September 2020.

This is a personal account of the effects coronavirus and lockdown have had on my daughter, she has severe learning disabilities. I am sure she is not the only one experiencing the type of overwhelming difficulties this has caused her.

Previously she has always been very busy. She used to attend 3 day services on 4 days of the week. Doing a lot of different things, swimming, badminton, arts & crafts and many other varied activities. In the evenings she used to go to an acting group on a Monday night, Guides that she has been going to for 34 years on a Tuesday night and another club every other Thursday. On the days she was home (weekends & Wednesday) we have always gone out and visited local places of interest with her. Liz has always been used to a lot of activities and plenty of social interaction.

Liz coped for the first couple of months of lockdown then a few things started to develop. For example we had a week of sleepless nights where she was only sleeping for 2 hours a night (both she and I were exhausted by the end of that), also she has had mood swings that are more than usual in that she can become very angry over something that is of no consequence and would normally not affect her. 

From the beginning of August life has become even more difficult for Liz. She has had some hair loss and her emotions have been up and down, she bursts into tears for no apparent reason and sobs and sobs as if she is in pain. She also stares vacantly at the carpet or the walls or into space. She doesn’t stay focused on anything for any length of time. She has started to say she is “Sad”, something she never used to be! She has always had a very happy outgoing personality. She loves mixing with and talking to other people and she thinks everyone is her friend so being “shut up” and not being able to see and talk to others is very difficult for her.

It is very difficult to witness her decline. She has never acted this way before!

She has been involved in Zooms with her day services but a Zoom cannot replace face to face connections. She has told us that she doesn’t want to do the Zooms any more with 2 of her day services so she only does the Zoom with one day service. When the Zooms first started she was interested and would sit and smile at the screen but as time has gone on she has stopped engaging with the screen and looks down instead of into the screen. She also has Facetime with her Nan, who she has always been very close to but she finds it more difficult to focus on the screen now and will look away most of the time we are talking to her Nan. She hasn’t been able to see her Nan in person since the end of March, this has been bad for both of them.

I contacted the LD healthcare team with regard to the changes Liz has been going through and was advised to ask our GP to carry out her Annual Health Review. I contacted the GP and they said she should have blood tests. I took her for blood tests and the GP phoned to say they had all come back as normal so she has no physical reasons for the above symptoms. She then advised that I should phone the LD healthcare team and ask for counselling for Liz as she felt the problems are more related to stress/depression and she felt counselling might help. I contacted the LD healthcare team again and they did a phone assessment and said they would take it to panel. The nurse told me she felt the problems are related to lockdown etc. and when it all ends Liz will be okay! Can we wait that long?

What she needs is for things to get back to normal. I know that is not going to happen but she doesn’t!

She went back to day services one day a week at the end of September but found it almost overwhelming and confusing at the same time. She went in really happy and I think she had a really good time seeing people and being able to chat but she came out very quietly and didn’t want to talk to us. It took a while through the evening for her to return to ‘normal’. I think the experience of going back was a lot different in reality to what Liz had imagined. She had watched the video and we had talked to her about the changes that would be in place but I think the reality was different. We are hoping that she will settle in and accept the changes over the coming weeks.

One 5 hour session a week is not enough for her to cope with life as it is now.

I know others will not be going through exactly the same as us. Most carers will be finding life very different and possibly difficult as a result of coronavirus and be in desperate need of help and support by now. Who to go to and how to get that help is a big problem as the person you want to talk about is always in the room with you!

Note: All names and identifying information have been changed in this blogpost

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