Experiences of loss

With over 200 blogs on D4Dementia now, some of them approaching 7 years old next month, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. This month, I want to look at loss.

Losing my dad

One of my most popular and shared blogs on D4Dementia is ‘End-of-life care: A very personal story’. I wrote the blog less than two months after my dad had died, and with my emotions still very raw I began the blog by saying:

"Planting up my father’s grave recently, I found my mind wandering back to our last few days with him, painful in so many ways and yet hugely comforting as well. Nothing is more important to me than knowing that we spent all day every day with dad during that time, that we were with him at the very end, and that he had what I would describe as outstanding end-of-life care."

I’ve been back to plant up dad’s grave many times since I wrote that blog, most recently last week to give it some spring colour as we marked what would have been dad’s 92^nd birthday. That was the first time our daughter could really participate in the gardening, and my feelings watching her digging little holes and helping to arrange the plants are something I can’t quite find the words to describe. It’s the closest she will ever get to my dad, which is a huge sadness as I know my dad would have adored being a grandpa and he never got that chance. The emotions may not be as raw now, but dad’s physical absence from our lives means that there will always be a missing piece in our family jigsaw. 

Loss from a distance

Very sadly I’ve had further personal experience of loss recently as my father-in-law passed away in South Africa, just 15 days before the 7th anniversary of my own dad’s passing and having lived and died from the same type of dementia – vascular dementia. Experiencing bereavement from a distance, having not been there to support my in-laws, as well as supporting my other half as he comes to terms with the loss of his dad, is the strangest mix of emotions, and the timing in particular has brought back many memories of my own dad’s passing. 

Distant bereavement means that you don’t have all of the practicalities to attend to, and you don’t feel remotely useful. Life is expected to carry on, and yet it isn’t the same and won’t ever be. Our parents shape our lives and the people we are – losing a figure so influential in your life is like having the rug pulled out from under you, and seven years on from losing my dad I have realised that you can never replace that carpet of stability and wisdom. All you can do is celebrate all that person gave you, and how they’ve helped you to become the individual you are.

Losing a new life

In my work life I draw on the strengths my dad gave me a huge amount, especially when dealing with any topic that involves loss. There is no denying the need to talk about advanced care planning, palliative and end of life care, loss, grief and bereavement, but while my personal experiences positively influence me as a trainer and writer they can also be painful to revisit in many different ways. 

One particular example of recent work, albeit ghost-written so I can’t signpost you to it as the author, was around how life story work can bring up thoughts and the associated feelings of bereavement(s) an older person experienced when they were younger. One of the most powerful ways I illustrated this was by drawing on the experiences of a lady I knew in her 80’s, who had heartbreakingly recalled a miscarriage as a young 20-something woman. 

At the time I never imagined this would resonate with me, but having had a miscarriage at 10 weeks last month I now know that an experience like that changes you. Other women older than me have told me they’ve never forgotten how they felt at the loss of the life they’d had growing inside them, and all I can really say is that in terms of pregnancy it reminded me of the title of a blog I wrote in 2014, ‘A loss of innocence’.

A loss of innocence not because I didn’t know miscarriages can happen, indeed my own mother had one before having me and I know many other women who’ve had miscarriages amongst my circle of family and friends, but because I will never view pregnancy, should it ever happen for us again, in the same way. As I said in my ‘A loss of innocence’ blog:

“Life is not and will never be as it was, and unlike many aspects of our existence this is something that we have no control over.”

For that lady in her 80’s recalling a loss of new life 60 years ago, as real then as the day it happened, is proof that living with loss is a lifetime’s work. Despite dementia taking many of this lady’s memories, it had left that one perfectly intact and able to torment her if the right care and support wasn't in place to help her overcome reliving those experiences whenever she saw a pregnant lady or a baby, having never been able to have children herself.

I’ve come to realise that any loss changes you, and perhaps the most important message about loss is that you don’t forget, and that’s ok. You can’t erase loss from your life however it has touched you; all you can do is find ways to acknowledge your loss and to live with it.

Until next time...

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

Inspiring end-of-life care

When I had my abstract, ‘End-of-life care: A very personal story’ accepted for oral presentation at the 2014 Alzheimer Europe Conference in Glasgow, I honestly never expected that it would receive a standing ovation from the audience. My presentation was included as part of the session on Palliative Care, and given the difficult nature of this topic I thought the audience would be small and very reserved. How wrong I was!

 

My presentation was inspired by my blog post of the same name published in 2012 that detailed my dad’s end-of-life care. The reason I chose to submit an abstract about it was purely because I feel that it is an outstanding example of end-of-life care being delivered in a care home setting, with the potential to inspire care providers as the very best of ‘best practice’. 

 

Whilst it may be intensely difficult for me to talk about, mostly because it brings back very vivid memories of great sadness at losing my dad, it is vital that professionals caring for people at the end of their life (whether those people have dementia or not) understand what good end-of-life care looks like, how to deliver it and why it is so important.

 

End-of-life care is emotive. It is something many of us instinctively steer clear of, and as I told the audience at the Alzheimer Europe conference, it is something I never really thought about until my dad needed it. What I also learned from other presenters in our session is that end-of-life care is something that many professionals aren’t very well equipped to deliver either.

 

There is a lack of training for healthcare professionals in end-of-life care, and training within social care settings is patchy and often inadequate. It’s not just about how to provide end-of-life care either; it also about how seeing someone through to the end of their life impacts upon the professionals who have provided that care.

 

The landscape in end-of-life care is complex, and full of stark realisations about facing up to our own mortality whilst providing the very best care to the person who is passing away. The overwhelming message from the Palliative Care session at the Alzheimer Europe Conference, however, was that despite the complexity of our emotional responses, the practical nature of end-of-life care is generally about simplicity and humanity.

 

For example, in my presentation I detailed the environment that my dad spent the last two weeks of his life in:

"Before dad’s arrival at the (care) home we had filled his room with his favourite things. Surrounded by his books, pictures and mementoes, with his much loved music playing and a lavender scent in the air, dad spent the last days of his life in bed, in his own cotton sheets and dressed in his own smart clothes. His bed faced a large window that looked out onto the garden where squirrels and cats played – a perfect scene for a man who had always loved animals."

I also spoke about the care he received from the care home staff, including a lovely soak in the bath, delicious puree food (up until the last 5 days of his life) and how he was regularly turned and changed, enabling his pressure sores to almost heal by the time he passed away. There was a special mention for the care home staff too:

"We could not have asked for professionals who were more caring, attentive and loving than those people were towards dad."

In these days of negative perceptions towards social care, and the people who work on the frontline in care homes up and down the UK, it is sadly very rare to hear good news stories, not least about end-of-life care, which is often fraught with disagreements and issues about palliative care being tantamount to ‘giving up’ on a person.

 

Yet good social care, and indeed good palliative care, can give immeasurable help and support to families when their loved one is nearing the end of their life. As I told the audience in Glasgow:

"An intensely sad time was made bearable for us as a family precisely because of the care given to dad. We felt huge relief that we no longer had to worry about whether dad was receiving the care that he needed, and the fact that he was so comfortable, calm and peaceful was testimony to that care."

What of the staff providing that care though, and their feelings? I could never have made this presentation without eluding to how they reacted to my dad’s passing, mostly because their humanity shone through in a way that for me should be celebrated:

"When dad was wheeled out of the home for the last time by the undertakers, the staff cried with us – for them, although losing a resident wasn’t a new experience, it was clear that every resident and their family matters. In that moment, their humanity might have ‘gone against’ protocol and practice, but it said so much about the care and compassion that underpins their work and which no amount of mandatory box ticking should ever be allowed to eradicate."

People who work in care jobs are human beings, with natural human emotions. Any attempt to turn them into robots who don’t have those feelings is basically asking them to remove the element of themselves that is most vital in providing the warm, caring, compassionate support that we would all want for our loved ones and ourselves.

 

That theme of humanity featured heavily in the list of the key elements of my dad’s end-of-life care that I concluded my presentation with, and that motivated me to write this blog. I would give each entry on this list equal importance and suggest that together they are viewed as part of a holistic package of end-of-life care: 

• Person-centred care
• Teamwork with families
• Attention to detail
• Well-trained and well-led staff
• Dignity and respect
• Kindness and compassion
• Personalised environment
• Time and patience
• Continuity of care
• Can-do attitude
• Multi-disciplinary team approach

These key qualities embody the simplicity I mentioned earlier, and also include one of the two main themes of the 2014 Alzheimer Europe Conference – Dignity. You would think that achieving dignity in the last days and hours of someone’s life is something that would happen routinely, but sadly not everyone is as lucky as we were as a family. 

 

I hope that the standing ovation my presentation received is proof that my dad’s story can inspire better end-of-life care for other people in the future, and that speaking about even the most difficult topics can be warmly received if you connect with people on a human level. And that is perhaps the most important message of all: we have great caring qualities as human beings that have the ability to change lives at every stage of life, even at the end.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook 

A loss of innocence

As those of you who read this blog post last year will know, April is a difficult month for my family. While the spring flowers come into full bloom, the lambs scamper in the fields and the temperatures warm up, this ambush of fresh colour and new life contrasts with memories of April 2012, a month that changed my life forever.

I've written about bereavement before, but I've found that as the time passes and I reflect on coping with the loss of my father, so my understanding about the process of grief and healing evolves. The title of this blog post perhaps reflects that more than anything else I could write. Put simply, losing such a close loved one is, I feel, a loss of innocence.

We associate innocence with childhood, and arguably losing a parent during childhood would potentially be even more life-changing. Yet as adults we aren't immune to feeling utterly bereft as a result of bereavement. I've heard many adults describe losing a parent as being orphaned, even though society generally only sees orphans as children.

When we are surrounded by the people that fill our earliest memories and who are most closely linked to our life experiences we feel secure. When one of those people departs, as is certain to happen one day, we are confronted by the full force of bereavement - something we can never really prepare for even if a loved one's passing is expected.

Life is not and will never be as it was, and unlike many aspects of our existence this is something that we have no control over - we cannot bring our loved ones back. The innocence we had towards life, love and the complex web of feelings that joins all of that up is gone. I think for me this is most starkly illustrated in a particularly bleak reoccurring memory I have.

I was with my dad when he died, and life-changing though that was I could never have been anywhere other than by his side. I recall it very vividly, and the aftermath, as first the GP came to certify his death and then the undertakers came to move his body to the chapel of rest. All first-time experiences for me, and none of them made any easier by knowing that those moments were coming many days before they happened.

My most bleak reoccurring memory, however, is from over a week later, when we visited dad at the chapel of rest before his funeral. Seeing his body perfectly presented but coldly lifeless in his coffin has haunted many a night-time for me. It is that image that forces my mind to relive his passing, questioning if I should have visited the chapel of rest at all.

I think that memory remains so vivid, when others associated with dad's death sit more peacefully in the back of my mind, because it represented a loss of innocence for me. Dad gently slipping away in his bed seems more natural than dad's body lying in a coffin. That visit to the chapel of rest was very confronting and may never sit easily with me, which is a reality I have to accept.

It was a visit I made because I needed to see for myself that everything was as it should be, but nothing could prepare me for it or will soothe the memories it leaves me with, save for dad's strong arms to give me a big hug and comfort me, something of course that can never happen.

My mum tells me that losing her mum is still incredibly hard to come to terms with 26 years later. Sadly I know many friends who have faced their own bereavements more recently - for some the tears are daily, for others the regrets are haunting. Some say their children have helped them cope. Others have found strength through their faith. What I believe we all have in common, however, is that loss of innocence. Bring brave in this new world is a struggle that for some people becomes engulfing.

I've had conversations with friends about acceptable time-frames for bereavement. How long is it 'ok' to grieve for? My personal view is there is no time limit, nor is there an 'acceptable' path, a one-size-fits-all coping method, or a magic solution. Some people say time heals. With the two year anniversary of my dad's passing upcoming, all I can say is that time has given me a mixture of emotions - the positive has been a reflective perspective and a huge amount of love and pride in being able to call such an amazing man my dad, but the negative remains those vivid images.

Each of us will have our own positives and negatives. No one can jump inside someone else’s head and tell them how to feel or cope or 'get on with life'. Finding your own way is one of the great unknowns in bereavement. The only way to protect yourself from this is to have no one and nothing in your life that you would ever or could ever mourn but that, for me, really wouldn't be a life. The joy our loved ones give us is the reason the pain is so acutely felt when they leave us. An irreversible loss of innocence that binds us to our everlasting love for them.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook 

Reflections on a life lived and a man loved



My dad

It seems hard to believe that April 2013 marks two very sad milestones for me and my family. This month will see us celebrating my dad’s birthday for the first time without him here. Less than two weeks later, it will be the first anniversary of his passing.

We often say how ‘time flies’ – well the first year without my dad has vanished in tears, memories, hopes, ambitions, achievements and still an almost overwhelming sadness that he isn’t here to share in my life. Without my dad’s courage, strength, love, determination and inspiration I wouldn’t be writing, blogging, speaking, advising and campaigning in the way that I am.

I’ve written before about my dad’s legacy. My desire to share his story - our story - and use the experiences we had together to try and make things better for the many families who are supporting a loved one with dementia. More than anything I wish you could all have met my dad – although I doubt he would agree, since he was generally a very private man who never sought the limelight. To me he was an example of dignity, grace, humour, kindness and insight into what living with dementia means that no words I could choose will ever accurately sum up. You just had to have known him, and I was very privileged to call him my dad.

I would like to think that the dates we will mark this month as a family will be more about happy memories and reflections on good times than dwelling on what we were going through this time last year, which still haunts my dreams and brings tears to my eyes. In truth, however, I really don’t know how we will feel and how the emotions will affect us. Bereavement is a strange beast – it can allow you to live in relative happiness one minute, then plunge you back into deep sorrow, longing for the person you have lost and taunting you with that precious wish for just one more day with your loved one.

I have thought long and hard about what losing a parent means, and how you can possibly move forward after that. When half of the partnership that created you, dictated your DNA, and in my case gave me a happy, stable and loving childhood filled with cherished memories, is taken from you, my view is that it breaks a bond that can never be replicated or replaced. The love you feel cannot be transferred to someone else. Losing a parent leaves you with an emptiness in your life that you will never fill.

As anyone who has had a good relationship with their parents will know, from an early age you come to rely on their guidance and wisdom, the care they show you, the support they give you and the unconditional love they surround you with. No one else celebrates your successes like a proud parent, and no one is ready to pick up the pieces when you make mistakes like a loving mum or dad.

I feel immensely sad that my dad won’t be by my side to see me make my way in the world, develop my career, maybe get married. If I ever become a parent, he will never know the joy of being a grandparent, and sadly for any child I may have they will only be able to learn about my amazing dad from me, rather than having their own relationship with him.

What dad’s passing will never take away, however, is the memories I have of him, including the many happy times we had together during his dementia. It cannot take away all of his qualities as a human being that he shared with me through his parenting, and it will never take away my pride in him and in being able to call him my dad. His honesty, integrity, desire to help humans and animals alike, care and compassion is something the world needs far more of than it currently has.

They say only the good die young. Well my dad was 85, to me just a number since he certainly didn’t look it. Without the toll dementia took on his body I am certain he would have lived far longer, so in my mind he was a mere spring chicken at 85 years young. Surprisingly, maybe, I am not angry or bitter at his passing – I honestly believe that he felt he had given me everything I needed to go on in my life, represent and share his values and make him proud, and so he was able to take his rest.

Having dementia often meant huge struggles for my dad, and I will never truly understand how he bore them with such resilience and good humour. I would like to think that one of his coping methods was the hope that he had managed to inspire his youngest daughter to make sure that his experiences were not in vain. The promises I made to him in the days before his passing should have reassured him of that.

Although my dad was the catalyst for what I do, the beneficiaries are all of us. I hope that my dad’s gift to society will be greater understanding, support, insight, and ultimately improvement in the lives of everyone who he has left behind.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook

In sickness and in health

Through my work I am very privileged to meet and chat with people whose day-to-day life revolves around caring for someone with dementia or living with it themselves. Why ‘privileged’ you might wonder? Simply because having walked this path with my father, I know how tough it can be, and I have the ultimate respect and appreciation for what living with dementia really means both for the person themselves but also for those who are closest to them.

A lady currently caring for her husband said to me last week that she feels like she is drowning, that bit by bit dementia is literally sucking the life out of her, her marriage, her greatest friendship, her home life and her future. She is realistic about what the years ahead hold; she notices every change, every deterioration in her husband and plans everything, such as she can, on ‘worst case scenario’. She says she sees nothing ahead of her except darkness and sadness.

Another lady contacted me to describe the great emptiness in her life. Due to her own health she could no longer continue to care for her husband of 50 years at home, and reluctantly had to take the decision to move him into a care home last year. Having been married at 22, and never spending more than a few nights apart in all those years, she felt as though the blow dementia had dealt her life was, in many ways, worse than the bereavement that comes when a loved one passes away. She described it as if the disease was taunting her, explaining that although she still visited her husband every day, he appeared utterly oblivious to her presence.

Dementia doesn’t just affect older people either. I still remember very vividly hearing the heart-breaking tale of a lady whose husband had been a high-flyer in London. He had been offered and taken early retirement at 51, and he and his wife had planned to enjoy what they hoped would be golden years of rest, relaxation, travel and doing all the things that they had never been able to do whilst he was working and she was bringing up their family. Within a year of his retirement, her husband had been diagnosed with early onset dementia and his symptoms were advancing at an alarming rate. She felt bereft and cried daily, expecting that her husband would possibly never see his 60^th birthday.

These are just three couples in amongst hundreds of thousands, in the UK alone, whose lives have been invaded by dementia. I write a lot about how having a parent with dementia affects your relationship with your mum or dad, but if anything the effect on a marriage or partnership can be even more profound partially due, I think, to the age demographics involved.

When you are part of the younger generation, you grow up to appreciate the fragility of life as beloved older relatives experience health problems and pass away. I vividly remember losing my much cherished grandmother when I was only 7. My grandfather had died when I was just a baby, and both my father’s parents passed away long before he even married my mother. If anything life as a youngster tries to prepare you for looking after your parents and coping with whatever their needs may be in the future, not that such preparation is ever enough.

In a marriage or long term relationship, where both partners are often of a similar age, having made a life-long commitment to each other and with expectations of growing old together as their children go off and live their own lives, the blow can be even more cruel. That life you thought you would always have together will never be as you expected it to be once dementia intervenes. One partner will often be faced with providing care and coping with changes in their spouse that leave them feeling completely empty , isolated and vulnerable. Moreover, as dementia is terminal, you face one day laying to rest someone who may be the only person in your world that you could truly rely on.

There are also additional considerations when a partner has dementia. I have heard people with dementia describe their sadness at being unable to share a bed with their husband or wife due to dementia giving them violent night terrors that puts their spouse at risk of being unintentionally hurt. Many couples also bravely talk very candidly about dementia wrecking the intimacy in their relationship. How their partner’s dementia means that they have lost the understanding of what intimacy is, and that they no longer reciprocate even a hug or a kiss.

Maybe as a society, with preconceptions that dementia is a disease of the old and that sex is the preserve of the young, some may feel that this is all a perfectly normal part of aging. But try telling that to the husband or wife who misses the warmth of their partner’s body next to them on a cold winter’s night, or the expression of love, reassurance, solidarity, tenderness and kindness that a kiss or a hug provides. Without those fundamental aspects of a loving relationship, loneliness, depression and the searing pain and sadness of what feels like a separation can be overwhelming.

To anyone who is on the dementia journey with their best friend, lover and life-partner, I send you my thoughts and hopes that you find strength amidst the struggle, and love within the despair. For you, ‘In sickness and in health’ has a meaning well beyond anything you ever thought it would.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook

You are not alone

Isolation amongst those caring for or grieving for a loved one is one of the saddest aspects of being a carer. Feeling that you are without support, help and guidance, trapped within an environment that has shrunk down to just your immediate living space, losing social interaction, and in some cases being ostracised through stigma and lack of understanding, can bring people to the brink of despair, and lead to problems ranging from depression to a dependency on alcohol or even contemplating suicide.

When caring for someone with dementia, you are stuck on an emotional rollercoaster which for almost everyone who has ever had a loved one with dementia means grieving for the person you feel you are losing in front of you, and then grieving again when they pass away. Feelings of loss both during the dementia journey and when it ends are major factors in isolating carers and impacting upon their long-term health and wellbeing.

Life after caring is a very strange mixture of feelings. The natural grieving process is individual to each person, but common feelings can include a loss of purpose, a craving for the routine you had (however exhausting it was) and a need within you to care that is no longer fulfilled. If you are of working age, returning to employment can see you coming face-to-face with colleagues who have no concept of what you have been through, and if you are retired, the days can seem long and lonely without the structure that came with caring.

Family members, friends, neighbours or even pets can help to fill the void, whilst for others being proactive and seeking out new hobbies, activities or volunteering for a favourite charity can be very beneficial. For me, immersing myself in my work and enjoying an amazingly happy new relationship has been my salvation. That does not mean that I don’t miss my dad every day because I do, nor does it stop me wishing that we could just sit together and enjoy a cup of tea whilst listening to his favourite music and wordlessly sharing precious time in each other’s lives. My grieving process is still relatively new (not yet five months old), but it has taught me that if you do not fill your time with things that occupy you and make you happy, you will have lost more than your loved one, your life will go too.

I have seen the struggles others have had in my position, and whilst I would never pretend that there is a perfect solution to coping with the isolation caring for and grieving for a loved one brings, if you do not fight the isolation it can be very overwhelming. Often, however, it can be difficult for carers to find an outlet for themselves and their emotions. The common advice is to take a break, but of course in the true switching-off-from-everything sense, you can never really have a break. Even when you are no longer caring, your thoughts and memories of your loved one remain very vivid, and your dedication to them does not automatically end; you cannot just ‘switch off’ from caring.

People who became isolated during their time as a carer are at a very real danger of continuing in that vein as they grieve if they do not have proper support and help. As a society we have still not found the solution to combatting isolation, in fact with so many of us leading such a busy existence, people whose lives exist solely behind closed doors are often forgotten about. It is well known that carers are not supported properly when they are caring, so it is no great surprise that for many this continues after their caring role ends. So many lives fade to a pale imitation of what they once were through isolation, and it is a damming indictment on the UK that so many feel cut off, ignored, taken for granted and abandoned.

Dementia can feel like your greatest enemy, but when it is gone, the person you care for is gone too. In my case, I would still rather have my father, dementia and all it brings, than be living without him. Many assume that it is a ‘relief’ when someone with dementia has passed away, but that could not be further from the truth. Like many all-consuming forces in your life, you struggle to live with it and without it.

For anyone currently battling isolation either as a present or past carer, I hope relief comes from knowing that so many others are going through the same feelings, emotions and difficulties. However isolated you feel, you are never alone; someone else has trodden your path, is doing so currently, or sadly will do in the future. When you are giving, or have given, so much of yourself to someone, it can be hard to see beyond that, but I know that in my case my father would want so much more for me than an isolated existence, and I am sure that whoever you are caring for or have cared for would feel likewise.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook