Care Home Visits - impact on everyone

We have seen a lot on the TV and in the media about the difficulties of care home visiting but it has been focused most often on older people.  In this article Shona, a parent carer of a young woman tells us about the effects of the restrictions on her and the family.

As lockdown eases for most of society care home residents remain indefinitely in lockdown. There is no information available to families to tell us what parameters have to be met before care home residents can leave the building and rejoin their families and their communities. I have tried to get a risk assessment to allow a home visit. I have been told take her out if you want but she can't come back until guidance changes and the provider has no idea when that might be.

My daughter has received excellent care during this period, staff have worked tirelessly to provide activities and entertainment and have facilitated phone and video calls. They are working under blanket policies so that fact she is in her late 20's and enjoys good health (but has a learning disability) is irrelevant. We have to mourn the loss of those who have died in care homes and work to prevent further deaths but we cannot stop advocating for the living while doing so.

This is the letter I wish I could share with my daughter that I wrote after our first garden visit. I have anonymised it deliberately.

(The visit was conducted in accordance with Scottish Government Guidelines for Stage 2 of the staged approach to visiting and communal activity in care homes.)

Dear <daughter's name>,

A garden visit sounded better than a window visit but do you think it was? I saw you twisting the neck of your t-shirt, jiggling your leg and avoiding eye contact; all the things you do at review meetings when you are anxious. You also wanted to get a letter to show me but you were not allowed to do that.

I had a tissue in my pocket but would have broken the rules if I had given it to you to wipe your chin when you drooled. That made me sad.

The whole visit felt like that day almost 19 years ago, you were 10, when you were going for major heart surgery. Leaving the house in plenty of time so we arrived well before the appointment time. Filling in forms, although yesterday it was my details that were required for the Visitor Booking Form. Today it was me who had to have my temperature recorded before the visit could proceed and you could be allowed out. I wasn't allowed to have Dad there to support me today though - one designated visitor, for 30 minutes once a week is all that is allowed.

Like that day once everything was checked I began to dread seeing you being led away again. I tried to keep talking to you just as we would normally but your responses were not the same as they usually would be. I mentioned <sister's name> and <brother-in-law's name> new house but you didn't ask when you could go and see the house or them. You knew <other sister's name> had been on a train but didn't ask when you could go on one. You seem resigned to life as it is now because you didn't once mention "the bloody bug" or ask when you could come and stay with us for the weekend. In the early days of lockdown you asked every time I spoke to you.

When you were being taken down to the operating theatre I was able to kiss you, tell you I loved you and that I would see you soon but today I could only blow you a kiss while wearing a face covering (kisses are magic they can get through). It felt wrong on so many levels. We were told the time was up and you were led away, hand firmly held in case you tried to break the social distancing rules.

I then had to get up and walk to the car but didn't reach the it before the tears started to fall just like that day so long ago when we had to leave the hospital ward. It was at least 20 minutes before I could drive away, breathing and heart rates returned to near normal.

The outcome of your surgery was never one hundred percent certain so the 6-7 hours of waiting was hard for Dad and I. The phone call afterwards then the rush to be by your side - people moving in the corridors to let us pass - and the relief that everything had gone to plan. We could then both stay by your side day and night if we wanted to. Today when you were led away I knew that the rules would have to be followed so it would be 6 days, 23 hours and 30 minutes before I could be two metres away from you again.

Love Mum x