Coronavirus and being isolated from a loved one

Last month I wrote about the coronavirus pandemic and answered two questions families supporting a loved one are grappling with: How do we hand-wash more and how do we self-isolate?

For families who aren’t in the same household, however, they are living through many weeks, which may potentially become months, without physically seeing their loved ones. If a family member is in a care home that isolation period may be the longest any of us experience, since care homes are - as we have seen - incredibly vulnerable to coronavirus outbreaks. 

Indeed, the impact of coronavirus on care homes and the devastation being wreaked in terms of illness and death amongst residents (as well as the huge risks many staff are taking if they don’t have adequate personal protective equipment) is on a scale that even on the current estimations is truly horrific.

Fears for a loved one in a care home

For numerous families, reading these stories will only magnify their own immense fears for the health of their loved ones in care homes, and many will feel utterly powerless and dreading every ring on their phone. Although we never lived through anything like this with my dad, there is no doubt that I know the fear of illness well, since dad was hospitalised numerous times in the last nine years of his life. 

For us, the dreaded phone calls would often come in the middle of the night and would usually be because dad had a worsening chest or bladder infection. Time after time dad pulled through until the last, catastrophic bout of pneumonia that eventually overwhelmed him.

With care homes currently in strict lockdowns, the ban on visiting has both emotional and practical ramifications. The longest I ever went without seeing my dad during his nine years in care homes would have been around three weeks when one of his care homes had a norovirus outbreak, and it was characterised by constant worry.

The pain of separation 

Fast forward to 2020, and most families are faced with being apart for far longer. The pain this separation will be causing many people was something I thought about whilst reflecting on my dad’s 93rd birthday earlier this month. We were lucky to be able to spend every birthday with my dad, but so many people will be unable to do that during this pandemic. 

The stark feeling facing many families will be the anxiety that it could be their loved one’s last birthday and they won’t have those memories of being together. Whilst this may sound trivial to some in the face of the threat of coronavirus, the loss of the celebration of these milestones together only enforces the painful separation. And of course if a loved one is approaching the end of their life and you aren’t able to see them, the effect on grieving families is immense. We can buy many things and do a huge amount as 21st century citizens, but we cannot buy time, nor replace the physical touch of hand in hand or cheek on cheek.

Ways to keep in touch with your loved one when you are apart

Much has been said about the power of the digital world to bridge the yawning chasm many families are feeling, and it is undoubtedly the best option for at least seeing each other’s faces and hearing each other’s voices through mediums like Skype, FaceTime and Zoom.

More traditional options like sending letters, cards and photographs might seem less appealing, but for the older generation and particularly if someone’s dementia is advancing, these might be more understandable and recognisable than digital options. 

Bear in mind too that as someone’s dementia progresses, a phone call may be incredibly difficult for them to contribute to as it contains none of the visual clues, like mouth movements and body language, that can help the person to understand what you are staying. And of course they cannot see you, so simply saying who you are may not be enough of a reminder.

Practical things you can do for your loved one

If you are wanting to do something more for your loved one than just keeping in touch, these would be my top three suggestions:

• Make a life story resource. It may be that one of your lockdown projects is to sort through old photographs or memorabilia at home, or do some family tree research. Commit to creating a life story resource from items you may have at home, or things you can find online about your loved one’s life. You could turn these items (using copies of any precious originals) into a life story book, box, collage for a wall or other resource. You could be more creative too, as this care worker was when she had a cushion created for a gentleman who was missing his late wife. And don’t wait until you see your loved one to give them your life story gifts - research an affordable door-to-door courier (examples here) and make it a lovely surprise for your relative to open during this lockdown.

• Make a playlist. If you know the music your loved one enjoys, begin a playlist for them. If you are unsure of some details, liaise with staff and make it a three-way remote project between yourself, your loved one and the care worker(s) supporting them.

• Send a food parcel, or package up favourite cosmetics, clothing, books, magazines, cd’s, dvd’s, hobby materials or other things your loved one will enjoy receiving. There are lots of things you can order online and have them delivered straight to your loved one, or get some extra items with your grocery shop, package them up and send them via a door-to-door courier. Again, this will make a lovely surprise.

All of these ideas, of course, won’t ever replace that personal contact, but in the face of the current restrictions I hope families will find comfort in being able to do something practical to feel more useful and to ease those long days until they meet again.

Next month I will continue to look at the issues raised by the coronavirus pandemic. Until then:

• Keep safe
• Stay at home
• Keep your distance from others
• Look after yourselves
• And stay well.

You can follow me on Twitter: @bethyb1886
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Coronavirus and living with dementia - Coping in unprecedented times

It’s not easy to know where to begin with a blog on the current monumentally uncertain times that the world is facing, but I’m going to attempt to address the coronavirus disaster (I don’t think the word crisis goes far enough) in this and subsequent blogs as we all try to adjust to the unprecedented circumstances we find ourselves in.

Firstly, way back (well it seems like a long time ago now!) when we first heard about this virus in December and as it escalated into January, it frightened me. Reports of the pneumonia it causes sent a shudder through me with vivid recollections of how my father - over a period of around a month - fought and died, drowning from the inside as his lungs filled with fluid. 

Anyone who thinks this is a trivial disease is so incredibly misguided and, in common with experts and governments around the world, I have one simple message: STAY AT HOME AND SAVE LIVES. 

I appreciate, however, that the fundamental change to the only way of life most, if not all, of us have ever known is a huge ask. I’m having to do it - currently self-isolating with my mum (who is 80) and trying to keep a 4-year-old entertained while I devote my working time to writing as all of my consultancy work is indefinitely postponed. It’s not easy, and if you are supporting a loved one with dementia, it will be even harder. 

I’ve been asked a few questions by families in this position over the last few weeks, and in this blog (and others) I will share my answers:

Help! How do we hand-wash more?

I know lots of people are struggling with this simply because A) a person with dementia may not remember to wash their hands, and B) even if the person remembers, they may be unsure of how to wash their hands or not do it with the thoroughness and for the length of time needed.

In his years living at home before his diagnosis, my dad struggled with personal hygiene, and although his care homes tried to remedy this, hand washing wasn’t frequent. Dad’s hands often looked dirty, even when he was about to be given a meal, mostly from remnants of old food or possibly even where he had put his hand into his incontinence pad. This was particularly noticeable once he was immobile.

So, this is a very real problem even before coronavirus magnified the need for scrupulous hand-washing. Some key points to remember to support a person living with dementia who is struggling with hand washing:

• Is it clear where the washing facilities are? Signage around the home can help the person to navigate their way to the bathroom or cloakroom to wash their hands. 
• Once inside the bathroom or cloakroom, is it clear where the basin, taps and soap are? Try to have contrasting colours to make it more obvious.
• Does the person know how to turn the taps on, how to get soap out of the dispenser, and do they remember how to wash their hands? Again, signage (pictures and words) can help to jog the person’s memory and support them to remain independent.

If the person is immobile, try what I used to do with my dad:

• I’d get a bowl of warm, soapy water and put it on a table in-front of dad or on his lap if he was calm. 
• We’d both put our hands in together, and using extra soap I’d gently wash his hands and wrists and scrub under his nails, taking my time and making it a relaxing experience.
• I’d then put dad’s hands into a towel, go and change the water for fresh, clean warm water and return to rinse his hands before doing a final dry on another clean towel.

It wasn’t a quick process, but very effective, especially for soaking off stuck on dirt, and from a sensory perspective it was lovely to both have our hands in warm soapy water together. I doubt from a virus prevention perspective it would be anywhere near as efficient as washing under running water as we’ve all been told to do, but if the person is immobile and it’s not possible to get them to a basin it would be better than no hand washing at all.

For a person with dementia who dislikes the feeling of water, hand sanitiser (with alcohol) is an alternative to hand washing. Sanitiser is, though, in short supply and I’ve had zero success finding any of this for our household.

Help! How do we self-isolate?

Many people with dementia will be living with other conditions like heart or lung problems that make them particularly at risk from coronavirus, or indeed their age will be a risk-factor. Avoiding developing this virus is by far the best policy, but self-isolation carries many challenges for a person who is already confused and frightened. My tips to support each other include:

• Avoid an overload of tension and a desire to ‘get out’ from all members of a household by having a consistent routine and lots of things to focus on each day. 
• Support a person with dementia to engage in hobbies they like or indeed to try new activities. If you need materials to support hobbies or activities, look online to see what can be delivered. Stores like Hobbycraft offer home delivery, but it will take longer than usual for your items to arrive (and of course there are lots of other arts and crafts websites too).
• An internet connection can be invaluable in terms of being able to keep in touch with family and friends via video calls or messaging, and so many services - like singing groups or exercises classes - are now being streamed online. These are at set times and are brilliant for helping to add structure to a day at home. Some other examples to try:
• Join the fabulous Wendy Mitchell for her ‘Web with Wendy’ sessions (the next sessions are 31 March and 2 April). Wendy says of these sessions: “I would like to invite you to a virtual cuppa on the web to discuss anything and everything....no questions out of bounds....”
• Participate in laughter yoga, designed to put a smile on participants faces during these testing times. Find out more about Everybody Laugh Together on their Facebook page. 
• Try some of the numerous virtual tours of museums, galleries, gardens and so much more in the UK and abroad. Do an internet search for the type of virtual tour you are interested in and be immersed in another world.
• You could also consider modifying some of the things we’ve been asked to do as a family:
• We’ve had requests for our daughter’s artwork to be sent to some of my care home clients - there is no reason why adult artwork wouldn’t be just as gratefully received. 
• My writing skills are being requested for everything from pen-pal services to life story research. Again, there is no reason why a person living with dementia at home, supported by their partner or family, couldn’t become a pen-pal for a person in a care home and mutually reminisce together.

Next month I will look more in-depth at how families can cope when their loved one is in a care home in isolation. Until then:

• Keep safe
• Stay at home
• Keep your distance from others
• Don’t panic buy
• Look after yourselves
• And stay well.

You can follow me on Twitter: @bethyb1886
Like D4Dementia on Facebook