No Privacy

Quite soon after my son James was born it became apparent that we were going to need some additional support at home. Initially this was in the form of some night sitting from our community paediatric nursing team.

We were exhausted as James’ sleep pattern was very poor due to his complex feeding difficulties and severe reflux. He required a small amount of feed every hour or two and was often very sick. It was difficult for us to sustain this over a long period and so along came a lovely lady called Sue to support us two nights a week.

Sue would arrive at 10pm and we would have a good chat over a cup of coffee before heading for bed secure in the knowledge that James was being well cared for until she left at 7am.

James was now almost three and a half years old.

I was expecting his younger brother Harry and it was decided by the local authority that we should be having some more help. Susanne entered our lives.

Susanne’s role was to support us by helping to feed, care for and occupy James within our home enabling me to have some time with our new baby. As the years passed, Susanne’s hours increased but James always wanted, and still does want to be with me if I am in the vicinity and this makes it difficult for others to engage him when I am around.

Susanne lived nearby to us and some years later when we were having some major building work done, she started to care for James at her house instead. This arrangement continued as it was very successful and Susanne would have James to look after at her house sometimes during the school holidays too.

James continued to have quite disrupted nights.

As he was on an overnight feed, funding was agreed to have agency staff in overnight to care for him. Over many years this eventually increased to 5 nights a week. It was often problematic with a stream of different carers all needing to be trained but it was necessary in order that we felt able to function as a family the rest of the time.

When Harry was young, he enjoyed seeing who was here in the mornings when he got up and he always got lots of attention from the carers. Once he was older, a teenager and still up in the evenings when the staff arrived, he found it much more difficult. Staff would arrive and want to chat and it intruded into our evening. Harry didn’t want to get up in the middle of the night and bump into them on the landing. I understood it was hard for him, it was difficult for all of us having strangers in our home.

It all stopped when Covid hit.

Literally overnight the help stopped coming. It was actually our choice at that time, the risk seemed too great. We were then very much on our own with my husband working long hours throughout the pandemic and James home all day too as day services had shut down. Then in April 2021 James moved from our home into supported accommodation and we’ve never had to have carers in our home again.

We are very grateful for the support we had over the years, it was something I’d never envisaged having to need but we’d have really struggled to cope without it. We are still friends with Sue, our first community nurse and Susanne still cares for James 25 years later. But….it is very hard having staff in your home all hours of the day and night. It feels very invasive, you are conscious that they are there and may walk into the room at any time, you know they can hear your conversations, nothing is really private.

When all the care stopped, we managed alone getting up to James every night ourselves however many times he needed us. Getting up whatever time in the morning he woke (usually very early). We did that for 14 months before he then moved out. It was hard work but actually when the carers stopped coming it was a relief to get our home back.