Husband calls for right to ‘care supporter’

Lesley, my wife, has young onset Alzheimer’s and has been living with dementia for 10 years and has been in a nursing home for over 7 years. Prior to March 2020 I visited her every day to comfort and assist her.

From then all visits were initially stopped entirely which, although understandable at first it was very difficult to manage and to take care of her.

At one point during the lockdown I (and the family) were called into the care home as she had not been eating or drinking for a few days it was thought by the GP and the care home that she was nearing the end of her life. However, after seeing her for 3 days, Lesley was much brighter and responsive (and eating and drinking) and I was most upset when I was then prevented from continuing my visits as she had improved. I felt very sure that our family contact helped with her recovery.

Later, when visits were possible again, they were initially held outside 2 metres apart until a pod was created. Then visits were possible with a screen between us. In both cases visits in this way were of no benefit to either of us as she was totally unresponsive and no contact possible. My wife is immobile and non-verbal.

John speaking at our event in Parliament in March © PA Wire, Stefan Rousseau

As an essential caregiver, up until 8th March 2022 I had to book a time limited appointment to be with Lesley in her room. The manager said no more than two essential caregivers could be in the home at the same time. However, now I only must book an arrival time with no limit of how long I can stay. Some improvement after two years!

I still have to keep a mask on at all times, so I am unable to eat or drink in her room despite the fact that I feed her and give her drink. Although the Government guidance states that there are no national visiting restrictions, this is not the case at a local level.

It is imperative that family members must continue to have close contact with a loved one who happens to live in a care home. The last two years have been so difficult and unbearable by keeping our family and so many others apart.

It is totally unreasonable and unacceptable to have been kept apart in this way. It is imperative that we all have the right to family life irrespective of where we happen to live and is maintained at all times. Families and close friends must be an integral part of the ongoing care and must be permitted in the future.

John Amos

Speaker at ‘Guaranteeing the right to maintain contact‘, Parliament, 9 March 2022