Home: a place of shielding and freedom: our CEO’s weekly blog.

I’m writing these words from the Isle of Skye where I arrived yesterday to visit family for the weekend. Every time I come to Skye I have a sense of coming home.

As the child of two Skye parents my life-story is punctuated by journeys ‘home’ to Skye; not least the activity of packing and going on the seemingly never-ending journey north from Glasgow. Decades ago, it did indeed feel like an intrepid adventure taking as it did an inordinate 12 hours for one large family to travel by buses and taxi and arrive at the place which for generations my family had called theirs. I possess memories of ridiculously hot summers spent with grandparents who seemed to me already ancient beyond years; I resurrected my Gaelic by listening in on the latest gossip; I gained insight into the strong cultural dialects of church and tradition, of music and poetry; I have memories of the rituals of crofting as my eldest son father took his part in shearing sheep, repairing byres and erecting fences.

As I grew up I recognised that deep within me was an inner truth that I sensed a wholeness of self only when I was in that space of open glens and brooding mountains, breathing in a beauty so raw it’s reality caught your breath, witnessing the vibrant power of nature in daytime storm and evening calmness. I also sensed a need to be away, to be distant, to be free and far. I now know that this was a sense of ‘home’ which despite all efforts I did not have away from this space.

To return home restores and renews, it re-invigorates, and it gives balance. I know acutely that this is not true for all and I am not blind to the brokenness of my own story. Home is not always a place of happiness but can be a harbour of hurt and a painful prison. But I also know from years of conversations with those who have never found a space to be themselves, and to feel secure and safe, that there remains a yearning and a desire to find that space which we often call ‘home.’

In this last week I have been reflecting with many others about the value of home.

I am especially mindful today of those who have spent months shielding themselves from Covid and who are being ‘allowed out.’ That is the phrase used by someone who wrote to me this past week. Fiona is receiving treatment for cancer and has been unable to go and see her father in a care home not just because the care home has been closed but because she has been shielding herself in her own home. She reflected in her letter the way in which she feels safe and secure, protected from harm and the unknown of this virus behind her windows and doors. She reflected that she was concerned about how she would cope with being away from that place of protection; a place where in her own words she has ‘cocooned herself from harm’.

Our home is a place of memory and belonging. It is not just a construction of brick and mortar, of stone and wood, though the physicality is part of what makes a place special. Home is a place and space which enables us to be authentically who we are as a person. It should be a place that we feel protected, able to be who we are without mask or pretence, able to be at ease inside our own skin.

But I also recognise that the best homes are places which enable you to have a sense of confidence and freedom to go out into the world to be changed and to grow, to fail and to flourish, and in both to be able to return with the confidence of acceptance, welcome and warmth.

So, I am thinking of those who are making that journey out today for the first time from the place of shielding to encounter and engagement with others. It is one which will no doubt be faltering at first but which I hope the rest of society will support not least by adhering to the safe practices which will keep us all safe from this virus.

But I am also thinking today about what home has felt like for those who have been caring for a loved one in their own homes. Many of them lost the packages of support which they had before the pandemic and these are only slowly getting back. Others chose to cancel care packages because they feared that workers would bring in the virus and these have still in most instances not been renewed. I am very aware from conversations this week that family and ‘informal’ carers across Scotland are exhausted and at the stage of really needing immediate support. The task of caring for a loved one is draining and depleting even of the energies of loving. Yet day centres remain closed and many sources of traditional respite are shut off to carers, including many care homes. There are older Scots at home who today are anxious about getting access to their GPs, unsure about when the podiatrist or community physiotherapist will next see them, who know that their own health has been affected by lockdown whether as an individual or as a carer or as someone who has been technically shielding.

Lastly when I reflect about ‘home’ today I am thinking of all those who I have spoken to and been in communication with in the last week about the place which their mother or father, wife or husband, grandparent has called home – their care home.

Yet another week has passed, and we still have not had an announcement about what date residents will be able to be visited inside their care home. I have said before and I fully acknowledge the need to carefully balance the risk of the virus getting into our care homes with the desire and urgent imperative to restore the rights of family and residents to be re-united. I am not naïve to the hardness of these decisions, but I am increasingly concerned that our scientists and others are not aware of the damage and effects of separation.  There are thousands who have not seen a family member for 21 weeks. Their care home is their home, a place of security and safety, a place which they have been protected in despite the ravages of this disease. There is a growing sense of anger and frustration that as the rest of society prioritises children going back to school and as snooker halls and bingo, funfairs and casinos are given dates for opening, we still do not have a date to restore life to our care homes, to allow indoor visiting, to inch closer to making our care homes back into real ‘homes.’

Home is a space and place,  a feeling and sense of being at ease and secure, of being able to become who you are and be what you dream of. Home is a place of memory and dreaming, of creating and growing. But home does not just happen – it is a work of heart and soul, of sinew and sacrifice.

Today we need to work with even greater energy to ensure that family homes are spaces where the old and ill, those shielded and in need of extra protection, feel they have the level of support and care, guidance and assurance that they need. Today we have to renew our efforts to ensure that our care homes do not become antiseptic units of infection management devoid of presence and humanity but are restored to being places of encounter and life. We need to get family back to start re-creating home not least for those whose time is in days and weeks, not months and years.

Home is the labour of those who feel the need to root their loving and compassion into a place and space, to create a cradle of belonging for family and friend, stranger and guest . When I close my senses there is only one place which webs me together. In that I am lucky. For at least a couple of days I am ‘home’ but with the conviction that we must restore and affirm that sense of home to and for all.

“In the distance day was dawning,
Comes to me the early morning,
Something tells me that I’m going home

The brand new sun shining bright
From the darkness fields of light
Something tells me that I’m going home

Going home
When the summer’s coming in
And the moonlight on the river
Shows me where I’ve been

Soft the rain is gently falling
Lightly cross the city morning
I get the feeling that I’m going home

Across the moorlands, past the mountains,
O’er the rivers, beside the new streams,
Something tells me that I’m going home

Going home
When the summer’s coming in
And the moonlight on the river
Shows me where I’ve been

As the train is rolling nearer
Ah, the feeling just to be there,
Something tells me that I’m going home

Now the skylines reach my eyes
The ridge stands out in highland skies
I just can’t believe I’m going home.”

(Lyrics of ‘Going Home’ by Runrig)

 

Donald Macaskill 

 

Dying of a broken heart: the pain of care home deaths. A personal reflection.

I interrupted one of my many Zoom meetings this week to go outside briefly and stand with others as the hearse carrying the remains of a neighbour left his home for the last time accompanied by the small family group able to attend his funeral. I was saying goodbye to a man of quiet dignity and constant smile who had left his home for the last time just before the pandemic as his dementia worsened to the extent that he needed to enter a care home.

As I stood there clapping with others in memory and thanks I could not get out of my mind the words his now widow had spoken to me a few days earlier. I had met her and as I expressed my condolences she told me of how she had been unable to see him for four months until his last few hours. She had nothing but praise for the care home staff but she was deeply upset about restrictions that prevented them from being in contact as they had for virtually every day of their married lives. I parted with her words ringing in my ears. “Donald you have to sort it. His death certificate said he died of his dementia, but I wanted them to write in it that he died of a broken heart, but they wouldn’t. He died of a broken heart. I just know it.”

As the weeks have gone on fewer and fewer people thankfully have died from Covid19 in our care homes and this past week we have seen the lowest level since the start of the pandemic. But sadly, in the rhythm of time there are still people dying in our care homes as there always has been and always will be. Care homes as I have said elsewhere are increasingly hospices in the heart of our communities; places of living in fullness and love until the end; places which give solace, comfort and care as folks come to the end of their days. So, there is nothing new about death and dying in our care homes. Indeed, over the years the ability to get to know residents as individuals, especially those wracked with dementia and its horrific hold, have made care homes places capable of giving people as personal and as appropriate an end as possible.

During Covid19 the natural humanity of caring has been interrupted. Part of the rhythm of a death which is expected is the necessary and essential presence of family and friends, to give assurance, offer comfort and to simply be present. Being with the dying is our greatest gift to a human life; surrounding a life with love and memory, holding one another in our first steps of grieving are intrinsic to good bereavement. The times I have been privileged to be with someone as they have died will forever be etched in my soul, without diminishing the aching sadness and emptiness that those moments brought. I have learned more about life in the presence of death than from any textbook or any teacher.

“He died of a broken heart.” Living is not just the intaking of breath into the frame of a physical body of flesh and bone; living is not just the occupying of space and earth; living is not just being there. Living is about relatedness,  knowing that you are part of a story, being assured that you matter, that your voice is heard and your personhood upheld. What is the point of simply continuing to be here when all that is of worth and meaning, of value and heart, is absent and held back from you. The number of our days are as nothing without a quality within those days.

So it is that I do indeed believe that there are many others just like my neighbour who have died and are dying in our care homes not because of the vicious virulence of a virus but because of the measures put in place to protect and save their lives.  I am definitely not saying that actions taken to protect are misplaced or wrong, certainly not in the earliest days of this virus. But now we have entered the 20th week of lockdown in our care homes and with regretfully no immediate move to visiting indoors, I have to with all honesty and I hope with integrity and sincerity, question whether we are now doing more harm than anything else.

I cannot imagine what it is like to have been in love with someone for decades, to have so become inter-twinned with another, that your steps are as one, your memories wrapped up in an alongsideness so intimate that there is nothing to separate them – and then to be separated, kept distant, only able to touch through glass, or speak through a machine. I cannot conceive the agony that it has been and still is for so many hundreds of not being able to touch and hold and be with those you love. I dare not imagine what it is like not to be with those I love.

There are loads of attempts to find a vaccine for this virus. But what I want – in the sad awareness that this virus will be around for many many years to come and that a vaccine may not work for all – is that we put equal effort into finding ways in which we can  better balance protection and presence; that we can devise ways in which families can be with their loved ones so that the scar of separation is removed from our care homes.

I have seen it before, and I know deep inside myself the truth that my neighbour spoke. It is possible to die of a broken heart; to turn your face to the wall because the voice that gives you confidence is not heard; the hand that strokes you in assurance is not felt; the smile that lightens your soul is not present. There is no science for such an assertion only the evidence of experience and the truth of knowing.

In the weeks and months ahead, we have to get better systems of Infection prevention and control for our care homes which are appropriate to their nature as a home first and foremost and not simply adopt measures and approaches from an acute hospital setting. In the coming weeks we have to give very serious consideration as testing techniques develop to appointing at least one relative for each resident to enable the continuation of contact and human presence throughout any future outbreak. Over the next few weeks we have to really start to hear and listen to the voices of those who have autonomy and rights. We have to stop doing to and for and start listening to the voice of resident and family.

We cannot mend a heart which is broken; we cannot bring back a life which is lost or fill the emptiness of the days which hundreds have experienced, but moving forward we all, I believe, need to commit to responding better and doing differently in the future of this pandemic.

There are few poems about loss and dying more beautiful than Maya Angelou’s ‘When Great Trees Fall.’ I end this piece with the last stanza of her poem because it reminds us that when anyone dies they leave not just a memory but a call to action based on their living. The hundreds who have died in care homes in the last few months, my neighbour amongst them, need action not memorials, they deserve change so that no more hearts may break, and to that I for one will commit.

‘And when great souls die,


after a period peace blooms,


slowly and always


irregularly. Spaces fill


with a kind of


soothing electric vibration.


Our senses, restored, never


to be the same, whisper to us.


They existed. They existed.


We can be. Be and be


better. For they existed.’

 

Donald Macaskill 

Welcome to Care Home Day 20!

Today (15 July) Scottish Care is organising Care Home Day!

This year we are organising the second Care Home Day. This day is a largely online event to raise awareness and promote care homes. We hope to share good news stories to bust myths about care homes and recognise the role they play in communities. Care home providers are encouraged to mark the day by doing a virtual activity which families and local communities can participate in

The theme is ‘Care Community, to highlight how care homes are essential parts of the health and social care community as well as local communities in Scotland. Care homes are places which provide high quality, person-centred care to support the health and wellbeing of residents and where staff demonstrate commitment and compassion every day.

At 2pm, we will be holding our first ‘Care Conversation’ where Dr Tara French – Technology and Digital Innovation Lead, Scottish Care, will be joined by Jenni Mack – Marketing Execute, Holmes Care Group. Together they will discuss the topic of social media in care homes, how social media can foster community, sharing positive stories and overcoming fears. If you are interested in taking part, please register here: https://us02web.zoom.us/webinar/register/WN_duD-F4LWS8C4dN34SpZO5Q

Between 3-4pm, we will be hosting a Twitter Discussion with a few questions centred on ‘Care Community’. Please join us and share your thoughts.

You can get involved by sharing content on social media using the hashtag #carehomeday20.