Coronavirus: Lucy – “I had to lock myself in the garage to work and I could often hear my sister screaming in the house”

We look after her at home, after she was failed by five care homes. There was neglect, then neglect and misuse of medication, a fire that killed one resident, abuse which was never addressed, and a complicated relationship with the last care home and social services which was horrendously nasty and stressful. The care home hadn’t managed to wash her hair in four weeks or give her a shower/bath in three weeks and social services thought this was acceptable and threatened us if we brought her home. In the end we brought her home for good and received an apology from the CEO of the care home company but not from social services, which has since made our relationship with them very fragile and tense.

We did not hear from social services when lockdown began. My parents, probably like many others, worry about rocking the boat and don’t like to trouble people. So I would chase social services on social media and the phone until I finally got a response. It took almost two months, and it’s always emotionally draining to fight for your parents as well as your sibling.

My sister spits her food out repeatedly throughout the day, asks for snacks and spits half of them out. It’s exhausting to keep cleaning up numerous times a day.

It’s also tiresome for us to fit our own meals around her. My father is diabetic and he’s often dealing with her meltdown when he should be eating his meal because his blood sugar is low. I miss being able to eat a meal in peace – I often have to hide in a corner of the garden or even the garage to eat, otherwise she will want my food as well as hers. If she hears me talking to one of my parents when I try to share mealtime with them, she will get jealous and have a meltdown, so we tend to eat one at a time. I miss eating with company and I miss going out for coffee or a meal by myself.

She has lost her routine of going out every other day to a park or quiet cafe or museum or library. When she used to go out she would often touch objects (doors, tables, handles etc) and touch her mouth. It would be impossible to stop her from doing this now with the virus. She wouldn’t wear a mask (or gloves, except in the winter). She doesn’t understand anything about the virus or why she isn’t going out, why we have no visitors, or why her whole family are at home all of the time. It’s overwhelming everyone being at home all the time. Sometimes one of us will pretend to go out, but this doesn’t always work – she’s very perceptive and often knows when someone has just locked themselves away in a room. She will bite the door and have a meltdown until they “come home”.

Her respite worker from the local day centre used to come over for a few hours twice a week. Often it wouldn’t make a difference in terms of my sister’s care, but I think my mother appreciated having another person to witness the burden of care. Sometimes the respite worker would take her out in her car with one of us, as my sister now needs two-to-one care. So now my sister hasn’t seen her, or any other visitors, since the end of March. She will not distance from people so we can’t have anyone visit, even in the garden. This has made her even more clingy than before. It’s just been a tiny world of her home and garden (she rarely uses the garden) and her parents and sister.

We used to worry when she hadn’t been out for a few days, that she would get into a new habit of not going out because of her autism and anxiety. Now it’s been months. Even if we could take her safely out somewhere, it may be an ordeal to get her to come out. She is often screaming as she is told to get in a car for a hospital appointment or another appointment that we can’t cancel just because she’s in a bad mood.

Because of the heat, her bedroom window is often open but she has become increasingly sensitive to noise during lockdown. The neighbours have friends over and children and can be very noisy in their garden. Other people are using this time to have work done, e.g. roof extensions, skips delivered, and it is noisy a lot from 8am onwards. My sister gets very annoyed by the noise, but we can’t stop it. She may be wondering why other people are going out but we aren’t. For us, her family, it makes us feel more alone and uncared for. Other people seem to be enjoying themselves but we can’t.

As the time goes on, we are more exhausted each day, emotionally and physically. It is hard to give her the routine she needs every day when we haven’t had a break. We become irritable with each other and tired of supporting each other as well as her. We are sleep deprived because she doesn’t sleep well and tires us out in the day and night.

I have had to give up my work as it involves emotional support phone calls to people who are sometimes very distressed – I had to lock myself in the garage to work and I could often hear my sister screaming in the house. I felt guilty about leaving my parents to cope with her when I was supporting someone else. I found it harder to work and suffered from burnout. Now I feel a loss of self-esteem and identity from not working. It is yet another way in which my life is very different from my friends’.

Although I feel especially lonely during this time, I often find it hard to speak to friends. One thing is the timing – the best time for me is early in the morning but most people don’t want to/can’t chat then. In the day and evening it’s very hard with my sister so unpredictable. Also, there are few people who understand or really try to. This alienates me more from my friends now.