Home Truths: Care for the carers

As a past carer stretching over 20 years for both my mother and husband, both of whom had Alzheimer’s disease, I remain very much involved with the ‘carer community’ at a local and national level.

Aside from having a trustee role in a local and national charity, I have also volunteered for some years at our local caring café, which is held twice a month on Saturdays. The café is a meeting place for people with dementia and their carers. 

The life of carers is extremely difficult at the moment. If they normally provide care without any professional support they will be continuing to do this alongside the additional burdens created by self-isolation. In normal times, they might well have been coping but been dependent on family members covering some of the everyday activities such as shopping, gardening, companionship and perhaps respite.

I do know of carers who have reached crisis point and under normal circumstances would be arranging respite care or even permanent care for their loved one in a residential home. This is just not possible at the moment, as due to the crisis situation in the residential sector, the care homes that they are contacting do not seem to be admitting new clients, except perhaps following discharge from hospital. 

When I was caring for my husband both he and I gained significant enjoyment from visiting the local parks and gardens and also visiting family. My husband either needed to be driven or to be taken out in a wheelchair. All the activities that gave us a quality of life would not be possible during this crisis. 

The local park is closed to cars, and the garden where I would regularly push him round in his wheelchair is also closed. Living with someone with dementia, particularly if they are restless and agitated is, I know, extremely stressful and particularly when confined to the home environment for a very large proportion of the day.

Since the coronavirus (COVID19) isolation measures were introduced, the Caring Café has been unable to meet, leaving a significant gap in the lives of people who attended so regularly. It was a lifeline in the week for many. In order to keep in touch with our members, we have been conducting calls or sending emails either for a chat or to offer practical support in relation to shopping, the collection of prescriptions, and even the supply of food and other essentials. We are now planning to introduce online video meetings for our carers to at least be able to engage at a distance.

Many individuals living at home and being supported by family carers do, of course, need and rely on carer support workers coming into the home on a regular basis. These are essential where the cared for person is so dependent that more than one person is needed to carry out their care. This may mean carer support workers are attending a cared-for person several times a day. 

We have all heard of the tremendous demand on the care companies, particularly at this time. There are significant risk factors with carers going from home to home to deliver care, often with limited supply of the personal protection equipment (PPE) needed to prevent the spread of the coronavirus between the support workers and clients.

We have heard about the high incidence of coronavirus (COVID-19) in residential and nursing homes and personally, I would be equally concerned about the care of those in the community that are receiving care at home. The profile of carer support workers has been raised recently but in my view we have a long way to go to raise the standard of support and training for support workers who provide home care.

Looking forward to the months ahead of living with the COVID-19 life will not become any easier for carers. Isolation is difficult for us all, but for carers with the added responsibility of caring for a vulnerable person, the isolation compounds their responsibilities. 

Caring for somebody who needs attention every hour of the day means the carer never gets any respite or relaxation. How can we as a community, a society or the government solve the seemingly impossible? Recognition of the complexity of being a family carer at this time does matter to carers – just as recognition of the value of those working in the NHS and in social care does. Family carers are the silent masses and where would the NHS or social care be without them?