Care homes across the country have shut their doors to visitors in an attempt to control the spread of coronavirus. The R&RA Helpline has received an influx of callers seeking information and advice on how they can support their older relatives in care from afar. We hear daily from callers about what it is like to be on the other side of the door, unable to be with the one you love. We listen to the heartache, the anxiety, the despair. The stories of our helpline callers tell the story of coronavirus and the desperate situation it has created.
When care homes started restricting visitors to try and prevent the spread of the virus, we began receiving calls from relatives distraught about the sudden loss of contact. The primary concern is not for themselves, but for the person receiving care and how they will cope. Many family members provide regular practical and emotional support to those receiving care, such as help with eating or giving comfort to someone in distress. Many callers to our helpline are worried about whether their relative’s physical or mental health will suffer without their support.
As visits are restricted, staying in touch with those in care by other means becomes all the more important. Some care homes have risen to this challenge and we know of care staff going above and beyond to help keep families connected. Other care homes are struggling to fulfil this role and we hear from callers distressed that they aren’t able to contact their relative. Callers are sympathetic to the challenges being faced by care staff, working under extremely difficult circumstances to try and keep residents safe. But some callers remain frustrated at being unable to speak to their relative for weeks and have become anxious for news and contact. We have seen the relationship between relatives and those providers suffer as a consequence.
“After four weeks of no contact with dad or the care home, as a family we were extremely worried about his mental and physical well-being” Anonymous helpline caller
Keeping residents safe
As staff levels began to drop, with care workers going off sick or self-isolating, we started receiving calls from people worried about how care homes would cope. Even before the outbreak, workforce shortages were a problem for the social care sector, with around 122,000 vacancies at any one time. Callers who had already seen the effects of such staff shortages on the care of their relatives are now concerned about how care homes can maintain safe and dignified levels of care during this pandemic. This is compounded by the fact that they are no longer able to visit to support and act as an advocate for their relative, at a time when the usual checks and safeguards have been relaxed to ease the pressure on care services.
Managing the virus
As it became evident that many homes were not receiving the support they needed to manage the pandemic, we heard from callers worried about the impact this would have on their relative receiving care. The lack of testing to identify whether care users or staff are carrying the virus, and the lack of personal protective equipment to prevent spread are two key concerns of callers. Other measures put in place to try and reduce the risk of any spread also raise concerns for callers, particularly the lack of access to medical treatment. As GPs and other health practitioners stay away to prevent cross-contamination of the virus, many callers worry about the impact on relatives’ health as appointments are delayed, cancelled or have to take place over the phone.
Uncertainty about coronavirus cases
As cases of COVID-19 in care homes began to hit the headlines, we heard from callers troubled that their relative’s home would not disclose whether they had suspected cases or not. When relatives hear about such cases in the home from other sources and staff decline to discuss it, this causes further fear. At a time of such uncertainty and apprehension, we are encouraging providers to be as transparent as possible about suspected cases and provide residents and relatives with information on how they are dealing with the situation, to help allay fears.
“We suspected there were cases of Covid-19, but were not told this. Having no information and knowing dad was vulnerable to chest infections was extremely worrying.” Anonymous helpline caller
Moving out of care
The uncertainty about coronavirus cases and the high mortality rates in care settings have led some people to consider moving their relative out of care to look after them at home. We have been supporting callers with their questions about this, including meeting the person’s care needs, any medical or mobility needs, any legal issues such as whether a Deprivation of Liberty authorisation is in place, and any risk associated with moving the person. For some people, moving is not a viable option. But for people who have mental capacity to make this decision (which should be assumed until evidence to the contrary is provided), this is a question of respecting their autonomy and choice about where they want to live (as protected by the right to private life in the Human Rights Act).
“I picked my mum up from the care home and brought her to my home this afternoon. I can’t tell you how relieved the whole family, and mum herself, are. It is like a weight has been lifted from us.” Anonymous helpline caller
Throughout the pandemic, we heard from callers distressed that they may not have the chance to see their relative at the end of their life due to visiting restrictions. The guidance from the government on this in England has been vague, has changed without notice and has at times been contradictory. The government’s action plan for social care clarified that “visits at the end of life are important both for the individual and their loved ones and should continue”. At such an emotional and distressing time, residents (and their families) should be able to rely on the support of those providing their care to facilitate this final contact.
“We lost mum today. It was a shock as so sudden and hard as we were unable to see her.” Anonymous relative
Coping with loss
As mortality rates in care homes, sadly, rose, we helped callers with practical information and emotional support on coping with loss. In these unprecedented times, many of the usual comforts to help with a bereavement are not possible due to physical distancing measures. For some callers, bereavement was coupled with unanswered questions about the cause of death and a painful process to find answers. This made an upsetting time all the more distressing.
We’re here for you
The Relatives & Residents Association is providing support to people at the sharp end of this crisis. We want to ensure the voices of older people receiving care, and their relatives, are heard. If you need advice or support on any care issue for older people, please contact our helpline. If you would like to share your story, please get in touch.
“The lack of control in caring for our relatives, at times knocks the stuffing out of you. R&RA are a lifeline, very impressive.” Anonymous helpline caller