My husband is in a care home. I visit him for 30 minutes each week in a car park
My husband was diagnosed with Alzheimer’s disease eight years ago. I vowed to look after him and never put him in a home.
Three years on, after sleepless nights, mental and physical exhaustion, and the sensation that I was disintegrating, I faced the hard truth: I was not the best person to look after my husband any more. After a long and heartbreaking search I found my husband’s present care home, and shed tears of relief.
The staff are loving and well-trained in dementia care. My husband is happy: he loves them all, and is well-liked and treated with respect. Before lockdown, I spent three days a week there and took him out walking, sightseeing, to restaurants. He received plenty of stimulation and I am convinced that the dementia was slowed down. We led a full and pleasant life. Relatives came and went as they pleased. The care workers were like friends to us all.
But when coronavirus struck, everything changed radically. Visits to care homes stopped and I didn’t see my husband for four months. I Skyped him every day, playing him music, and though he has lost the power of coherent speech he chatted away and was alert and engaged with me.
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When testing became more widespread, visits resumed in August. The home gave us a visiting policy, based on the very broad government and local authority guidelines. It is long, repetitive and often self-contradicting. At a Zoom conference held by the management we were promised a personalised visiting plan, based on our unique circumstances. We were given a questionnaire asking what form of visiting we preferred and where visits should be held. It was indicated that we could hug our loved ones.
The reality was very different. There was to be just one visitor, the same one for each visit. Visits were to be 30 minutes per resident per week in a tent in the busy car park, separated by a large table, behind a large plastic screen. We wore masks. No touching, no hugging.
My feelings lunge from one extreme to another. My husband is alive, whereas several of his fellow residents died of coronavirus. The care home does not employ agency staff who move between homes. Much care is taken to keep infection out of the home and visiting footfall is restricted to essential workers.
The care staff are friendly and welcoming, and as lovely and clever as they always were. They risked their lives to look after my husband when they had no personal protective equipment and no testing. They could have run away but did not. I am happy and grateful.
But human rights have been abandoned in the fight against Covid-19 and I have no say in anything concerning him unless the managers allow it. I can’t be close to him, touch him, eat with him, go for a walk with him, or do anything but sit for 30 minutes behind a screen, singing, acting, joking, just to stimulate him and try to stop him forgetting who I am. He can never see his daughters or his grandchildren and they can never see him.
The attitude of the managers has become more authoritarian though they are still polite and friendly. Many of my questions are dodged or go unanswered. When I persist I am told: “We are following government guidelines.” There is a reluctance to engage in discussion, and announcements are made on the home’s website which affect my whole life and that of our family, with no discussion possible.
Those in charge of visiting interpret the rules in their own way. Once, having booked through the compulsory channel, my visit was then vetoed and cancelled for no clear reason by another employee. The effect was devastating. Now I almost fear turning up for my visit to my own husband.
Why am I and other relatives not allowed into the care home? Maintenance people, suppliers, care staff who have children and spouses, people who may be going out and about in public (as they are entitled to be) are all allowed in. I am older, don’t go out anywhere much and am very careful to socially distance, as are probably most other relatives. We’re probably the people least likely to spread infection.
Surely my husband’s mental and physical health matter more than maintaining the gardens? He could walk for miles four months ago and now he can barely totter to the tent, supported by two care workers. His powers of concentration and alertness are leaving him and he often can’t focus his attention.
Of course I agree with the policy in general, but our care homes are mainly private and for profit, however well run they are. Their reputation is their chief asset. Filling places is paramount to the homes’ financial survival.
If Covid spreads through the home it might go out of business, so the most conservative approach is adopted. And the families are the easiest targets. We are afraid for our loved ones. We are afraid to make waves for their sake. So we are the “footfall” that is easiest to get rid of.
If you would like to contribute to our Blood, sweat and tears series about experiences in healthcare during the coronavirus outbreak, get in touch by emailing sarah.johnson@theguardian.com