making care decisions in a pandemic
Help for Carers

Making care decisions in a pandemic

How has Covid impacted your caring role? A neighbour, a friend and I share our experiences during the pandemic…

For all of us, caring in lockdown was ultra challenging. Alarming headlines about shielding, isolation and the tragic loss of loved ones before their time were and remain chilling. If you had family care decisions to make, you had to consider whether it was best for you to personally shoulder more caring responsibilities at this time. Carers were still helping dearly loved family members move into care homes or maintaining home care.

Many thought about cancelling home care support or moving a loved one out of a care home and in with them. Some were you about to engage local authority or paid-for care provision but put plans on hold because of coronavirus.

We know now that social isolation due to shielding severely affected both mental and physical health during the pandemic. For many people both before and since, the expertise and society in a care home can be a place of relative rejuvenation. Care homes and home care can also restore relationships to their former status. Mums become mums again and husbands become husbands again (rather than patient-carer).

What were care homes like then and now?

At the beginning of 2020, some care homes kindly, if reluctantly accepted untested patients discharged from hospital, to help keep the pressure off the NHS. As we now know, unknowingly and devastatingly, they brought the virus into their home. We’ve all seen the media reports and many have wondered how we all could have let that happen to our most vulnerable family members and dedicated care professionals. 

Let’s not forget care workers’ bravery and commitment. For simply showing up for work, like NHS staff, they deserve our heartfelt thanks. They too will all have been emotionally and physically impacted by the virus. I hope that skilled care workers will start to be properly appreciated (and paid) for the work they do.

We’re all aware of the occasional horror stories in the media but the majority of care homes are utterly devoted to their residents. Most don’t ‘just’ rehabilitate or care for residents, they form deep relationships, sparking joy and purpose despite the worrying times.

Care home creativity

Many care home staff went to extraordinary lengths to prevent infection by isolating themselves, even sleeping in care homes away from their own families. Most devised new safe social activities to help residents continue to live as well as they can. New exercise classes, pub quizzes, afternoon tea, live music on zoom, fascinating online Mirthy talks, makeshift beaches and for some, tech-enabled family contact all helped keep residents’ and families spirits up. 

Care home visitors were sorely missed, but ingenious new places to meet inside or out meant visiting of sorts could resume eventually (if late).

Jenny and Brian’s care decisions

Maud and Jenny in Jenny's home

Jenny cares for her husband Brian, who lives with Alzheimer’s. In recent months, they’d both been ‘surviving’, their world shrinking as Brian became unable to leave the house. Home confinement felt easier while everyone was in lockdown. Nevertheless, there were times when Jenny felt trapped and resentful. She’d always said she’d never ‘put Brian in a home’ but knew there could be a ‘trigger event’ that would impact their care decisions. The trigger event turned out to be Brian’s collapse in June and Jenny’s inability to help him up on her own.

Looking back, Jenny now realises how emotionally and physically exhausted she was then. She asks us all to think carefully about our own situations and what might be the right thing for us and our family. Of the three care homes she’d visited before lockdown, Jenny found one she loved. After testing and pre-move-in isolation, they carefully welcomed Brian into the care home. He’s now stronger and taking a couple of steps again, with kind, gentle encouragement. Jenny is currently able to visit once a week in pre-booked appointments. Temperature checking, masks and keeping her distance in a special room set up for single-family-carer visits means short visits are possible. It’s sad there’s no hugging, but it’s bearable.

Jenny’s tips when considering moving into a care home:

  • Prepare well in advance of anticipated big care decisions. Arrange Health and Finance LPAs asap (use the link to find out how to do it). It takes a few weeks to complete (online), witness and then post the LPA forms for registration. If you don’t have LPAs it’s much, much harder and much more expensive to obtain legal representation through the courts when you want to sort things out with banks or healthcare providers.
  • Sort out and separate your finances as soon as possible. Names on utility bills need checking or transferring. Banks and utilities may demand original or certified copies of documentation (like LPAs) to make any changes to names on the accounts later.
  • Join a carers group (virtual or real-life) for lots of understanding, judgement-free, knowledgeable advice and financial tips.
Claire's mum

Claire and her mum’s care decisions

I met Claire on Twitter, she helped her mum move into a care home in April 2020. It was while visiting care homes and meeting their kind and highly trained staff that the penny dropped. While no one loved her mum like her and her family, they were no longer the best people to care for mum, who lives with dementia. 

Claire’s tips when considering moving into a care home:

  • Long before you might need a care home, like Jenny, Claire recommends legal, financial and emotional preparation. Claire had also arranged LPAs in plenty of time.
  • It’s a big emotional discussion for the whole family. It can take a while to get everybody comfortable with the move. This needs careful negotiation, especially for family members who may be in denial.
  • The care given is more important than the bricks and mortar. Claire was most impressed with the ‘marvellous and experienced’ registered manager leading the culture of committed holistic care. Low staff turnover and no agency staff makes for one big family in their chosen care home.
  • Despite Claire’s mum being unable to express her feelings, she still experiences feelings and it’s clear that the care home makes her feel comfortable.
  • Claire wanted an environment she’d like to visit too. Easy parking and visiting for her and her dad were important.
  • When visiting prospective care homes, Claire suggests visiting your shortlist well in advance, even years in advance. Good care homes suggest you visit as many times as you like and at all times of day to get a feel for the place.
  • Some care homes will need to see evidence of two years of fee cover. This may seem brutal, but is practical. Claire’s glad that her mum is in a place that is both affordable and caring. (Find help on eligibility for local authority support here.)

Claire expands on her experience in her post on the Mobilise blog if you’d like to know more.

cup of coffee

What is home care like right now?

Like care homes, home care companies have had to train and support their staff while scrambling for the PPE to protect them and their clients. Home care workers have the added pressure of not being entirely sure how well shielded their clients are. They rely on the client’s family and friends to help keep everybody in the client’s bubble safe.

Maud and Mum’s experience of home care

The decision we had to make in March 2020 was whether or not to put Marj’s home care on hold. My first instinct was to batten down the hatches. However, I wasn’t going to furlough and needed to keep working through lockdown. I knew full-time working plus full-time care duties would swiftly overwhelm me. And if I was poorly, what would I do then?

So we continued with the support of Marj’s carers and I’m glad. I was grateful that Marj’s carers got hold of PPE quickly through their resourceful manager. All carers have maintained stringent hygiene. For this reason, Marj remained infection-free and we’re all thankful.

I’ve written previously about finding home care, nowadays care providers will be expecting your extra questions about health, safety and infection control. And ask how you can help keep each other safe. I keep sanitiser by Marj’s door and a notice to remind us all to sanitise and wear PPE every time we enter.

What’s best for you?

If a parent or partner is starting to need a lot more support and it’s starting to overwhelm you, think future care decisions through carefully. There comes a time for many of us when we’re not the best people to be giving care any more. However hard that might be to accept. We need to be able to recognise when that might be. It’s definitely worth exploring options sooner rather than later, even if you won’t need them for a few months or years yet. And don’t let Covid stop you from finding out.

Above all, love and good luck,

Stop press, here’s the link to the book Peter (an M&M reader) recommends below (high street book shops are available too 🙂

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