Living with loss and grief in a care home

Photo by Fabrice Villard on Unsplash

Part I – Living with loss and grief in a care home - A time for a bit of extra support?

Living with loss and grief in a care home during these times is a part of the every-day experience for carer, staff and families.

For anyone who is working in the care sector may need a bit of extra support at this difficult time. We asked therapeutic counselling specialist for people with dementia and REAL Communication Works advisor, Danuta Lipinska, to share some of her own experience and wisdom about such things.

In this article, you will find lots to reflect on and useful suggestions that can help you through this challenging time.

Caring for frail older people or even younger people with life limiting conditions or mental health concerns and physical disabilities or a dementia, you will not be a stranger to the ongoing nature of dying and death, loss, grief and mourning.

Care staff often say to me, “Well, it’s just part of the job. We do the best we can, and we usually don’t let it get to us too much.” 

But this is not just the job as usual. So why is it different this time? The nature of this pandemic brings us into the realm of Traumatic Loss.

This means that there is a deeply disturbing threat of actual or possible harm directly towards you, your loved ones, those you care for at work and the citizens of the world at large. Feeling frightened and anxious are natural human responses to trauma and the threat of trauma.

Fear of breaking down and losing control are also common..

Caring for residents with the illness, wondering when the next person will become unwell and supporting their death and dying, knowing that what we have done has not been enough in this case brings feelings of inadequacy, guilt, hopelessness and helplessness, great sadness and anger.

The losses associated with the Covid-19 pandemic arouse our basic instincts to threat and we respond in the instinctive way (our ‘gut response’) is Fight, Flight, Freeze or Follow (you can find out more here). We feel the loss of how things used to be in our care home and may feel powerless to change it.

Living with loss and grief in a care home is having a profound effect on the residents and many more of the women and men who live there are becoming unwell.

Some are going to hospital and not coming back, and some are dying in the home. You wonder if their death could have been prevented. You may not have had the chance to say goodbye to a person you have come to care deeply about over many years. Relatives, partners, children, grandchildren are not able to be with them as their illness progresses and their dying and death takes place.

You are responding to multiple losses – many losses at once. At work, at home, in your families, in the community, the country, the world. You have had to take on the management of the multiple changes within the care home that would not normally be occurring. Even if you have had an earlier quarantine event that required the home to shut down and relatives could not visit, you would have had an ending in sight when things could return to normal. At the moment we don’t know when the end might be.

Our basic needs for security and safety have been threatened. For some people, food and shelter, jobs and finances are affected. For many, their sense of wellbeing and being able to cope has been challenged and they are not themselves. We were unable to prepare for this and this can leave us feeling de-skilled and vulnerable.

Loss

Loss (or bereavement) is what happens as a result of the changes in our lives or the actual death of a person or pet.

Loss is the event that happens when we are rowing along the River of Life in our canoe and suddenly, we are thrown over the edge into a waterfall and the swirling whirlpool below. Along the way, over by the rocks there is a calm deep pool. We could end up in either or both of these places.

The losses associated with the Covid-19 pandemic arouse our basic instincts to threat. Our needs for self-protection and survival kick in and we respond in very basic human and instinctive ways (our ‘gut response’) Fight, Flight, Freeze or Follow.

Grief

Grief is what we feel and this can be a ‘whirlpool’ of many emotions all churned up and colliding with and washing over one another, or a quiet still pool where feeling numb and non-reactive is just another way of being with the loss. It is a process of stages that can come and go, co-exist and last for as long as we need them to. There are many ways people have written about grief. Possibly the most recognisable is the Five Stages of Grief described by Dr Elisabeth Kubler-Ross in 1969. They are Denial, Ange, Depression, Bargaining and Acceptance.

It is important to remember that we all grieve in our own unique way, and these are just guidelines that might help to make sense of your experience. If it doesn’t, that’s fine. Something and somebody else will be there to help you, if you ask, when you are ready. That might be tomorrow, it might not be for a long time.

At this particular time, it seems to me that there are a few kinds of grief that we are experiencing within this pandemic.

Global grief
My grief
Your grief

What if… grief (or ‘Anticipatory grief ‘ – our real worry and concern about what might happen in the future – can feel as real as if it is happening NOW).

This diagram might be helpful in visualising how your experience of grief might be at the moment.
Notice that the river does keep flowing onwards, away from the chaos and pain.

Living with loss and grief in a care home

A Whirlpool of Feelings

You might be feeling ANY or ALL of these… Being sad, angry, annoyed with others, numb, hopeless, feeling like arguing, in despair, swearing, ‘not myself’ shutting others out, sleeping more than usual, not sleeping, not eating, comfort eating, guilty (I am safe, others are not; can I be doing more? Why am I at home when I should be with my colleagues?), crying, frightened, alone, lost, ignored, suicidal, wanting to harm yourself, confusion, panic, anxiety, disbelief, astonished by kindness, hopeful. These and more feelings are natural in these difficult and uncertain times.

You might be by yourself at this moment, and you may be feeling alone, even in the midst of a busy care home. But you do not have to stay alone in your thoughts and feelings, you can be seen on an app, online if you choose, or on the other side of the fence at the back of your house.

Mourning is what we do to acknowledge the pain and the loss and offers a ritual, a tradition, a faith or spiritual based activity which focuses on the loss.

For some helpful tips and ideas on to cope have a look at Part II – Coping with loss and grief

With thanks to Danuta Lipinska 

About Danuta Lipinska

A passionate specialist in the understanding and care of any older person and those with dementia, successful author, counsellor, supervisor, Action Learning facilitator, trainer and International speaker.

Check out more articles and helpful guides covering ‘Wellbeing for Carers’ here >

Coping with loss and grief

Coping with loss and grief

Photo by Arno Smit on Unsplash

Part II – Coping with loss and grief and Some tips to help

What can we do about it?

When you stop to consider, take a deep breath. Perhaps you can share your feelings with a co-worker or manager and when you get home, with a trusted partner, friend or family member, your faith leader, counsellor, or call a Helpline. Their staff are there to listen to your concerns, not just to respond to suicidal feelings.

Talk and listen to one another

This is important even if we are not in the same room or close enough to touch or hug. You don’t have to do this by yourself, even though you may physically be alone.

Find a friend at the care home, or your manager. “I need a minute please” is a good place to start. Often your work colleague will know exactly what you might be thinking or feeling, as they share the same experiences as you. They might just be feeling or seeing things differently to you and that can be helpful for both of you.

If you are feeling overwhelmed, suicidal or self-harming, or your usual coping strategies are not working ­– you may be drinking or using more drugs than usual, call one of the Helplines listed below.

Take a break from the routine​

This will take just 5 minutes so why not go to the staff room, or step outside for a moment. Let a colleague or your manager know you need to take time out. Many managers have relaxed the usual routine of working to allow for more breaks in the long shifts.

Breathe

Taking some deep breaths really can help clear the stress, anxiety, the ‘fog’ in our minds, bringing more oxygen into our bodies and brains which is really helpful for shifting our thoughts and worries (see here) and this helps bring new energy to tired muscles and organs.

Have a drink of water – now

Just do it! Even as a temporary measure until you can make your favourite warm drink or soft drink. Staying hydrated helps our mood and brain function – the place from where all the thoughts, feelings and behaviour are controlled.

Have a snack

Pizza, cakes, chocolate, fruit, raw vegetables with dips and healthy chips, nuts, drinks and goodies can keep spirits up in the staff room.

Ending the shift

Write down three things you feel good about today. It can be very simple. “I gave Barry a great shave”; “Marion really enjoyed her strawberry ice cream”; “I helped Amy talk to her Dad on the iPad.”
Write down the names of anyone you are especially concerned about and add a kind word next to their name.
Add the thought, “I have done the best that I could do today. Well done.” Leave the piece of paper in an envelope in your locker. Close the door and leave it there. Now you are ready to leave your work place and move to the next. You do not have to open the envelope when you come back tomorrow.

Remembering together

Recalling happy memories, though it may be painful, can also be comforting. Many care homes are gathering residents and staff together once a week and sit together, light a candle, look at photographs of the person in the home during activities or events and talk about the person who has died, playing their favourite piece of music, having their favourite dessert, baking a cake together for tea time, watching his/her favourite film with ice-cream cones. Everyone is encouraged to share a word, a brief thought or memory, aloud.

A Memory Tree

Photos of the person who has died and thoughts from anyone in the home about them can be written on the ‘leaves’ and hung from the branches of the tree. This can be a small tree with fairy lights inside the branches or painted onto a wall or a cut-out of a tree tacked onto the notice board.

You can be as creative as you like with these processes of community remembrance as it aids our grief and mourning process and acknowledges our shared experience of loss. Care home staff have said how helpful this can be, and the residents feel part of what is happening too. Which is also essential to their wellbeing.

Be gentle with yourself

Remind yourself that you are doing the very best you can in the situation. We think that you are doing a tremendous job and one that is often unseen and unheard. You are caring for the most frail, unwell and vulnerable people in our families and communities. You are providing caring and skilled accompaniment for women and men at the end of their lives.

You are ‘standing in’ for loved ones, families, friends and faith leaders who are unable to be there. What an important role this is and gives comfort to so many family members who cannot be there with their loved one. THANK YOU.

Samaritans HELP LINE 116 123 or Cruse Bereavement Support, 0808 808 1677
Whirlpool of Grief Dr Richard Wilson, 1992
Dr Elisabeth Kubler-Ross, The Stages of Grief 1969

With thanks to Danuta Lipinska 

About Danuta Lipinska

A passionate specialist in the understanding and care of any older person and those with dementia, successful author, counsellor, supervisor, Action Learning facilitator, trainer and International speaker.

Living with loss and grief Part I – A time for a bit of extra support?  

Check out more Wellbeing for Carers here >

SCIE have great resources – and here’s why

SCIE have great resources – and here’s why

By Sarah Reed 17 June 2013

I recently tweeted that SCIE have great resources – and here’s why:

We’ve just celebrated Carers Week 2013, and it’s important to remember that getting anything right in meaningful dementia care for a person can be a challenge. The cognition, awareness and linguistic goalposts are continually on the move and the very personal and unique nature of the condition is challenging.

Help is at hand. The lovely people at SCIE have invited me to write this opinion piece after I tweeted “@SCIE_socialcare is probably THE best care resource on the web – excellent in every way! Thank you.”

I really meant it. The resources on the site are extraordinary. Want to know more about reablement? They’ve got it. Need guidance on how carers can work with care staff over dementia care? This is where you’ll find it. Keen to up-skill yourself in co-production? Here’s the seminal advice.

SCIE has gathered a stellar group of care specialists and persuaded them to share their deep experience and knowledge on a wide range of subjects, which any carer can use whether working professionally or in an entirely domestic setting with a family member of friend. This is where you’ll find some of the most expert trainers.

I publish Many Happy Returns’ “conversation trigger” Chatterbox 1940s and 1950s cards for people with dementia; I also run REAL Communication Works™ skills development workshops, to promote better interaction with people with dementia for health and social care care-givers, and University students. The participants are often thirsty for knowledge and it’s great to know that I never need to swamp them with paperwork to support the programme. I just point them in the direction of the SCIE website. Job done –and a few trees saved, into the bargain!

And when writing articles or developing other resources of my own, it’s vital to get it right in every respect, so the SCIE website is my first port of call to check that my point of view is supported and endorsed by the best of the best-practice experts.

SCIE always remember the people they serve – the people who use services and their carers. It’s good to be reminded and as growing numbers of people are caring for their families at home, this is more important than ever. Here’s the story of one such couple; they happen to be my parents.

My Dad was a stiff-upper-lip kind of man

When a loved one develops dementia, those closest to them are likely to experience feelings of confusion themselves, as well as anxiety, guilt, grief and bereavement – even before the person dies, as the illness progresses.

No sooner do they come to terms with one stage of the loved one’s illness than the person’s behaviour changes again or their cognition declines further and the grieving starts all over again. A sense of loss is one of the most powerful feelings that people experience when someone close to them develops a dementia.

My father spoke about this with me on a number of occasions during the decade that my mother had dementia. Had SCIE been in existence at the time I know how it would have helped us.

He said that not only had he lost the person he had married in 1940, he’d also lost their future together. He missed the years of happy companionship they’d enjoyed, but equally, he was frustrated by the constraints on his freedom.

After three years at home, my 85 year-old mother was admitted to a care home. For my father, whilst relieved, this rendered the family home an empty vessel, with only the ghosts of their former lives for company. Of course my mother’s life was hardly better, coping with an utterly different and mystifying life, in the company of strangers.

My father seemed overwhelmed by sadness and anger. I noticed his underlying resentment and unhappiness that things had not turned out as he hoped. He was lonely and isolated and he worried a lot about the potential cost of ongoing care.

Unable to recognise that he was under a lot of stress and unable to to ask for the emotional support he needed, he would bottle up his feelings. He began to weep openly.

We encouraged him to spend time with friends, but he found it difficult to do things that would normally have included my mother. He tried to muster his old energy, but without his beloved partner of sixty years, he gave up.

A few years on, after a short illness and three years ahead of my mother, he died.

“Who’s in that box?” she asked at the funeral.

Sarah Reed is a dementia communication specialist and trainer; and founder of social enterprise, Many Happy Returns