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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Christmases past and present

Christmas with dad

I think for most people Christmas is about the many traditions we each have for celebrating the festive season. For the last nine years our family traditions were modified to fit in with my dad’s life in care – this year will be our first Christmas without him, and to be perfectly honest I am really not quite sure what to expect.

Many people assume that visiting a loved one in a care home is hardly the ideal way to spend Christmas. I would admit it does take some adapting to – modifying your established routine can be a bit of an organisational and diplomatic challenge, eating two Christmas lunches (a small one with dad and then our main one with the wider family later in the day) is not ideal for the waistline, and you are in danger of spending the entire day rushing around to such an extent that you feel Christmas has totally passed you by, but I would not have missed those precious moments with dad for anything.

Our last Christmas with him came amidst the backdrop of huge problems within his nursing home (that I wrote about here), and dad himself was not at his best as he battled yet another chest infection. He struggled to eat much of his Christmas lunch and was entirely disinterested in his presents – in contrast to previous years when he demolished extensive 3-course meals and complained that he did not like his presents!

Our approach to Christmas for dad was always to make it as happy and festive as possible. We would decorate his room with traditional items that he was familiar with, fix his cards to the side of the wardrobe so that they did not mysteriously disappear, buy and wrap lots of presents (new clothes - since clothing wears out so quickly in care homes - and CD’s of much loved music were all staple presents), and arrive on Christmas morning, me resplendent in my Santa hat, with the camera and lots of festive cheer.

Our challenges were minimal, however, in comparison to the difficulties many family carers face when they are looking after a loved one with dementia at home over Christmas. For many carers Christmas is a time of isolation, and while their neighbours celebrate around them, 25th December will be just another day of relentless struggle and ultimately exhaustion. With so many services shut down for the holiday, Christmas can also be a nightmare time for getting help should your loved one become ill, or indeed be very frail and nearing the end of their life.

Even for carers who are more supported, many of the Christmas traditions can present challenges. For example some decorations can be dangerous if the person with dementia does not understand what they are, certain colours or flashing lights can cause upset, an excessively decorated or crowded dining table could lead to confusion, and even your menu may need to be adapted to take into account a loved one’s changing eating habits.

For most family carers, however, I think one of the greatest concerns can come from how visiting friends or relatives may react to your loved one’s dementia. Be mindful that they may need guidance to understand and support the person you are caring for appropriately. For example, it is not uncommon for people with dementia to forget how to open cards or presents – we coped with this by gently helping dad, rather than just waiting, or demanding, that he manage alone.

Of course whilst so many of us are focused on Christmas, is it also important to remember those people with dementia, particularly in care homes, for whom Christmas is not part of their tradition or religious beliefs. Their wishes can often be forgotten amidst the celebrations, and they can become even more confused or disorientated by Christmas paraphernalia that is alien to them.

Looking back now over those many Christmas with my dad during his years with dementia, I would advise anyone in the position that we were to make the most of those special times together. They do not last forever, and Christmas is overwhelmingly a time to embrace our families, particularly the most vulnerable amongst us. Sadly this year I will be putting my dad’s Christmas card on his grave, but memories of Christmases past (and particularly this one that I contributed to the Prime Minister’s Christmas dementia campaign ‘Xmas to Remember’) will warm my heart and hopefully ease the pain.

As this will be my last blog post of 2012, I will sign off by thanking you all for your support since I launched D4Dementia back in May. I am very proud of the way the blog has grown, the feedback from people of all backgrounds to say how much they have enjoyed reading it, and the recognition it received by being shortlisted for a Roses Media Award. My next blog post will be in January 2013, so until then keep warm, well and happy.

Merry Christmas, and may 2013 be the best year yet for improving the lives of people living with dementia and their families.

Until next time...

You can follow me on Twitter: @bethyb1886

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Time well spent

Me and my dad

Discussing my dad’s journey with dementia often brings a fascinating insight into people’s perceptions of the life I had during my father’s nine years in care homes. One reoccurring theme is the assumption that being part of dad’s life during those years was unbearably hard, and that visiting him must have been something I found extremely difficult.

In fact the truth is somewhat different. Aside from the last few months, when we had what became insurmountable problems at the home (as I detailed here) that totally changed the atmosphere and experience, the time we spent with dad was extensive, precious and, now that he has passed away, represents cherished memories that we will hold forever.

I always found comfort, rather than distress, in visiting dad, and actually struggled the most when we were apart and I did not know what was happening with him. Then I would wonder if he needed anything, was feeling lonely, poorly, happy or sad, and whether the care he was receiving was of the standard we expected. When he could still hold a conversation we could always chat on the phone if I could not visit, but when I wanted to be updated on how he was I relied on the staff to answer my questions. Having family members visit at different times helped to communicate news on dad, but I always missed him and looked forward to seeing him, regardless of how difficult a visit could be.

When someone with dementia is exhibiting challenging behaviour, being aggressive physically or verbally, or in the case of the total opposite of that, being unresponsive and not even looking at you, talking to you, or you feel they are looking straight through you, it can be demoralising to continually put yourself through that experience and you can be left wondering how to cope.

For some people visiting is a choice, for others it is a necessity, and it is not for anyone to judge a person on how they respond to the situation that they find themselves in. Some relatives cannot handle seeing a loved one deteriorate, whilst others question the ‘point’ of visiting someone if they do not know who you are, are asking the same questions repeatedly, and forget that you have been there with them the moment you have left. I always looked at it in a different way however:  if for just one minute of my visit I made a difference then I brought something to my dad’s life that he would not have had without me there. Often you may feel you never had that minute, but it is about whether your loved one has.

For me, visiting a friend or family member with dementia is what you make it. If you go expecting them to react to you in order to spark the visit, you will make that visit harder for you both. If you employ a policy of interaction, rather than just reaction, you have a greater chance of feeling you have done something worthwhile. I always liked to be very hands-on, feeding or shaving dad, doing his hair and nails, singing with him or reading books, checking his clothes, mending them and sewing in name tapes, or taking him outside to the garden. Having that level of involvement in dad’s care, keeping busy and chatting whilst I did things, kept most visits light and cheerful and created a happy atmosphere.

It is very common to feel that you are visiting a person that you do not know anymore. Accepting the changes and remaining as positive as possible, at least in front of your loved one, is a tough but necessary art to learn. There is a saying that ‘Strangers are only friends who haven’t met yet’. Visiting someone you have known and loved for years, possibly all of your life, and being treated as a stranger can drive the most devoted relative away, but your role is to make friends with them over and over again.

Against a backdrop of feeling like you are grieving for your loved one, you may be more inclined to cry than be friendly and happy. Many tears were shed over the years by quietly retreating to my dad’s en-suite bathroom for a moment of reflection, but I always firmly believed that I did not want to upset him by allowing him to see me distressed and wondering why I was crying.

Occasionally that resolve did slip, even the best coping strategies fail occasionally, but on the whole going to see my dad was about visiting him, we were not visiting his dementia. We ate together, had copious cups of tea, listened to music, watched sport or went out and about – all the things we did as a family during my childhood. Back then it was unthinkable that he would end up living in a communal establishment, but when that became a reality our involvement was what stopped it being an institutionalised environment and made it his home. The result? Visiting was easier and crucially, dad was happier; a classic example of time well spent.

Until next time...

You can follow me on Twitter: @bethyb1886

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