#CarersRightsDay

By 26th November 2020 Community Stories

Lesley and Kirsten, plus soft toys Mack and Mickey Mouse.

Today is Carers Rights Day, and we are so grateful to Lesley and Camphill Scotland for sharing this blog with Corra.  The blog captures a families experiences of the coronavirus restrictions, the impact this had on their daughter’s wellbeing who has learning disabilities.

Family struggles in lockdown
Our daughter, Kirsten, is 39 years old and has been a member of a Camphill Community since she was seven years old. Her journey started at Ochil Tower School followed by Camphill Blair Drummond and now she attends Corbenic Monday to Friday all day.

Flourishing at Camphill
Kirsten had a very troubled start to school and I always considered that the Principal of Ochil Tower School rescued her from a system that wasn’t designed to deal with children marching to a different tune.  Kirsten has thrived in the routines that are built into the Camphill ethos and we have seen her flourish over the past 32 years.

Then Lockdown happened!!

A busy household
At the beginning of lockdown, we had five dogs, five adults and a new-born baby in the house.  This included Kirsten’s sister, Claire, her baby, Jamie, and Kirsten’s grandad, aged 92 and forgetful, us and the five dogs. Not all the dogs were ours, but they were staying with us nevertheless.

Life was very full on and time flew past. Kirsten took her responsibilities as Auntie K very seriously and spent hours singing songs, virtually non-stop, to Jamie. She loved the opportunity to go out on walks with the pram.

We also did a lot of activities with Kirsten – jewellery making, papier-mache, drawing, jigsaws etc.  And we made a lockdown book with photos of all the things we had been doing.

At the end of May Kirsten’s sister returned home, so now we were four people and four dogs.  And this is when things started to go wrong.

Lack of contact affects mental health
Our busy household was not quite so busy. Kirsten’s brother, David, took his dog back so we were down to Kirsten, Grandad – still forgetful, us, our two dogs and our Guide Dog pup.

Kirsten struggled to focus on the activities and, in all honesty, we were struggling with them too. What had been a bit of a novelty at first had become mundane and our enthusiasm for them all was replaced with despair at the thought of having to keep trying to hold her interest when we were all clearly tired of them.

Kirsten’s mental health deteriorated quite quickly and medical intervention was required. This helped and we all carried on as best we could. Unfortunately a few weeks later her mental health took another turn for the worse and we needed help again.

Grandad, still forgetful, returned home at the end of July.  Now it was 3 of us with 3 dogs. Surely this would make life easier?  You would think so…

Kirsten’s brother, David, brought his dog back to us, as Furlough for him was over.  We were now 3 adults and 4 dogs!!! The numbers have crept back up.

Floundering without routine
The thing we are still missing in our life is routine for Kirsten.

I always knew she needed consistent routines, but lockdown has shown just how dependent she is on them. Kirsten has floundered without them and become totally obsessive about her soft toys. I think the day she asked her dad to apologise to Tigger as she felt he had been rude to him was probably our funniest but also most depressing moment since she had been at home. I can safely say that I found it funnier than her dad did. Kirsten didn’t find it at all amusing when no apology was forthcoming and decided not to eat her tea that night. Soft toy obsession is still ongoing and can start at 3am……….

The only routine we do have for Kirsten are Zoom calls twice a week with a local charity, every Tuesday and Thursday at 7pm.  They do quiz nights, karaoke, crafting, dancercise and lots more.

I have taught nearly all of the participants at some point so we all enjoy seeing them and their parents. It makes me feel better knowing that we are not the only ones who are struggling, and their input has been amazing. Next week I am hosting the meeting and I am doing a dog quiz. We use the breakout facilities on Zoom and this also gives time for chats with others after the main event.

We also Facetime the craft workshop every Thursday so that Kirsten can say hello to all her friends.  She misses them all very much and it can be very cheering for her to see everyone and say hello.

Camphill structure is missed
Despite these activities we are still struggling to make a structure to the days for Kirsten. Her obsessions have increased and as I write this she has refused to get ready this morning. No bath, teeth brushing or hair washing. The need to deal with the soft toys now overrides personal care and meals.

Eventually, I know, everything will return to normal or as near to normal as possible! I am sure we will make it through but some days we do start to doubt ourselves and I am sure we are not alone…

This blog was written by Lesley Venters during Coronavirus restrictions. 

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