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...

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The rainbow of dementia

This week will mark what would have been my dad’s 91st birthday, and later on in April, the 6th anniversary of his passing. These milestones have left me reflecting on the last 19 years of dad’s life, how dementia crept into his life and year by year gradually overwhelmed him.

The picture painted of dementia in 2018 seems to have two distinct hues - the brightness of those who are living well, or as well as they can, and the darkness of those nearing the end of their lives, with the multiple physical health problems that I remember only too well. Yet as I think back over those 19 years, it was never as simple as two different hues for my dad.

If anything, it was much more like a rainbow, with the red roughly representing the beginning of my dad’s dementia (which was a gradual onset rather than a distinct change from one day to the next) and the violet representing the end of dad’s life. As the curves change colour, and reduce in size, so my dad’s dementia deteriorated, leaving him with fewer skills and more struggles.

Why a rainbow though you might wonder? It’s bright and cheerful and associated with the freshness and beauty that follows the darkness and rain. I certainly haven’t chosen it because I’m a 100 percent devotee of optimism where dementia is concerned. My positivity has always been tempered by stark memories of times that whilst difficult for me, were undoubtedly far worse for my dad.

I’ve chosen a rainbow because to me it represents balance: The brightness of the colours suggests something special and positive is possible at any point in a person’s dementia, but the reducing curves remind us that the struggles, or the paddling as my friend Kate Swaffer describes it, only becomes more pronounced.

If I think about my dad’s 19 years with dementia - certainly for the majority of the first 10 years - whilst the difficulties gradually increased, my dad had independence, looked after himself reasonably well for maybe five of those years, could read and write for the early years, follow TV programmes and sports, had a fairly good command of language, was able to participate in conversations, and certainly wasn’t slow in articulating his viewpoints. By 2018 standards, he would have made a good Dementia Diarist, a popular DEEP (Dementia Engagement and Empowerment Project) or DAI  (Dementia Alliance International) member, and an engaging public speaker (although my optimism on all of these fronts is tempered by knowing that my dad was a fairly private man by nature, so maybe wouldn’t have wanted to speak publicly).

Those are probably the red, orange and yellow years. By the time we get to the green and blue on the rainbow, dad’s in and out of hospital, and moving from a residential care home to a nursing home. For my dad, the key turning point is his larger stroke, and from that day confusion, communication difficulties, urinary incontinence, changed behaviour and a whole raft of inappropriate interventions (most notably antipsychotic medication) follow. My dad is becoming a much more stereotypical example of what society thinks about when it thinks about a person with dementia.

The indigo and violet years are characterised by further physical decline, with immobility, double incontinence and four years of dysphagia for my dad to cope with before the end of his life. This is the picture most people conjure up when they or a loved one are diagnosed. But as much as the ‘red’ years don’t go on forever, so most people with dementia don’t jump from ‘red’ to ‘violet’ either.

I am a great believer in seeing every face of dementia for what it is: The person living as well as they can in the red to green curves of the rainbow is giving hope to every single individual who has just been diagnosed or will be in the future. Without that hope, everyone just fast forwards to a picture of what 'violet' looks like, and that is only going to lead to more rapid deterioration with the added pain of potentially severe depression, hopelessness and even suicidal thoughts.

The person living in the blue to violet curves is never going to offer the same type of hope. They are coping with a greater array of physical health problems and are increasingly reliant on others for their care and support. Our perception is that brightness is fading, but what we learn from these individuals about the human spirit is perhaps even greater than their more articulate peers. Moreover, the qualities we find in ourselves from becoming caregivers represents invaluable, albeit sometimes very painful, life lessons.

Aside from my dad and the people I’ve known personally who are affected by dementia, I’ve met so many other individuals through my professional work who are living with dementia, coping (or not coping, and yes, sometimes suffering) and every single person has taught me something. As my dad took his last breaths I learnt about peaceful serenity. As I see a person living with dementia giving a conference speech, I learn about their strength to stand there and tell their story (often without notes, something I cannot do). As I see a person living with dementia in a care home trying to regain mobility after a broken hip, I learn about determination. As I read a book, a blog, or a social media post from a person with dementia who is laying bare their personal experiences, I learn more about living with dementia than I ever could from a textbook. As I see someone managing a few mouthfuls of food, and breaking out into a satisfied smile that they’ve outwitted dysphagia for one mealtime, I see a will to go on living despite the obvious struggles.

When my dad's life started to change, which in hindsight was when he began developing dementia, I had no idea we had 19 years ahead of us. As every year went by, we just tried to make the most of whatever situation we found ourselves in and give dad the best quality of life possible. I certainly don’t think we always managed that, and I dearly wish I’d known then what I know now.

Did my dad live well? Yes sometimes. Did he suffer? Yes sometimes. But when I reflect now, the fact that it’s a rainbow I gravitate towards, feeling an affinity with the brightness rather than the reducing curves, reminds me that although dad is gone we lived those 19 years together, and for all their ups and downs there was a beauty in the love that bound us together and that shines on.

Until next time...

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Why are you a carer?

On the face of it this is a really simple question, yet it is one that can generate so much discussion. It's something I've been asked a lot in the last few years in the context of, "Why did you care for your dad?"

People are often surprised that as a teenager, twenty-something and thirty-something I would have put my life on hold to care for my dad. Yet consider this: when people begin a family they are rarely asked, “Why would you want to have children?” despite the massive life-change and life-long commitment parenthood entails.

Although the motivation for becoming a carer, the reasons people continue with caring (often against a backdrop of significant difficulties), and the way in which many carers struggle to move on with their life after their caring role ends are very individual, there are some common themes that often surface when you talk to carers, and I want to explore those commonalities in this Carers Week 2017 blog.

Why become a carer?

Many people who’ve never been a carer often approach the topic under the premise that people who are carers have made a lifestyle choice to be so. Big mistake. I have never met anyone who woke up one morning and actively decided to become a carer for a relative or friend. Every carer I have met fell into caring for someone they love due to various circumstances, largely beyond their control, and generally never realised they were becoming a carer.

It is a well-worn phrase, but worth repeating: I never considered myself a carer for my dad, just a daughter looking after her dad.

My G8 Dementia Summit film

Do labels matter? In essence no, if you realise that you have taken on a responsibility that has consequences for your life and your health and are proactive in ensuring that you look after yourself as well as the person that you are caring for. In reality, however, the 'carer' label will - in theory - give you access to services (if they exist!) that without that label you wouldn't be able to access. If those services are fit for purpose, they can help to prevent carer ill-health and carer breakdown.

Why do you continue to be a carer?

Again, this question suggests most people make an active choice. They don't. Carers remain as carers often through a lack of choice, and as much as it may be very un-politically-correct to admit it, often through a sense of duty, obligation or necessity.

However, that isn't to underestimate the human emotions that accompany caring. They are potentially the biggest driving factor towards carers remaining as carers once you remove the 'circumstances beyond your control' element. Moreover, it's emotional ties that often keep a carer caring for longer than is perhaps good for them or the person they are caring for.

As much as caring is immensely difficult, there is something in the depths of the human psyche that wires us to prevent suffering in those we love and give comfort and support. The rawness of this emotional pull isn't the same for everyone though, which may explain why in a large family it's often one person who is the primary carer with other family members very much on the peripheries. And that is no one's fault - again, it's often a mix of circumstances with a good helping of emotions.

Why is it so hard to move on when your caring role ends?

Again, it's those emotional factors biting us in the depths of our hearts and souls. You don't spend that much time with a person, and potentially nurse them through the end of their life, only for your life to return to your pre-caring days afterwards.

For a start, the bereavement experience is very different - you aren't just grieving the loss of the person, but a loss of the purpose and routine you had. Caring, for all its challenges, is something many people become exceptionally adept at, and the feeling of doing something so important so well is a huge source of pride which can be lost when you are no longer caring for the person.

Why is capturing carer knowledge and experiences so important?

One way of combatting the loss of skills and purpose is to go into a social care role professionally, and some of the very best care workers I've met in my consultancy work have a strong background of being family carers. For other people, caring for 'strangers' is just too difficult after caring for a loved one, no matter how much we might say that 'Strangers are just friends you haven't met yet', or indeed the former carer's own health or age make such a career choice prohibitive.

My interview with Havas Lynx where I talk about the wealth of knowledge and experience carers have and the importance of capturing that

The challenge for all of us, however, is to find ways of capturing carer knowledge - at every juncture of a carer's life - to benefit others, be they family carers or professionals. And if you are a health or social care professional, NEVER consider yourself more learned or accomplished than a family carer, be they a current or former family carer. That unique pull of circumstances and emotions creates a rarefied learning experience that really is - both positively and sometimes negatively - second to none.

 

Until next time...

You can follow me on Twitter: @bethyb1886

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B for Burden?

I vividly remember as a child the first major bereavement in my life. The sudden death of my maternal grandmother came as a huge shock to my whole family and left my mother utterly devastated. As a small child I had little concept of what this grief and shock really meant, but I do clearly remember my mother telling me that gran had always said that she, “Didn’t want to be a burden on her daughters,” like her mother (my great grandmother) had been to her sisters (my great aunts), and that she would at least be glad that her sudden death had ensured this.

I never thought much more about the issue of burden at the time. What it really was and what it meant was of little interest to me then, but it would come into much sharper focus in my teens and twenties as my dad lived with dementia. Many people expressed their belief that my dad’s dementia must have been a huge burden on my life and that of other family members, with my peer group in particular finding the whole notion of having a parent with dementia just too burdensome to contemplate.

At the time, as ‘friends’ dropped by the wayside, I remember thinking that one day they may be walking in my shoes. Would it simply be the case that as adults with their own life, job, partner and children of their own, that their parent(s) would become a burden that they just didn’t have the time and energy for? The whole concept of burden is incredibly interesting, not least because technically we are a ‘burden’ to someone from the moment we are born until the moment we die.

Looking at burden through that technical viewpoint would mean that when we are born we are a ‘burden’ to our parents, because without their care, which takes a considerable amount of time, effort and money over many years, we are unlikely to survive to even make it to adulthood. We are a ‘burden’ to our teachers who must educate us, and we are a ‘burden’ to any healthcare professional who is charged with helping us in the face of serious illness or injury.

As young adults we often become very focused on our own lives, and of making a ‘new’ life that moves us away from that model of our early family existence and into being an independent entity. But we don’t stop being a ‘burden’ – technically if we have an employer they could consider us a ‘burden’ given the rights and protection employees have under employment law. Likewise in our private lives, any partner we may have could find domestic daily life with us has elements of being ‘burdensome’. We may even become a ‘burden’ on the state if we need financial or housing assistance - anyone can fall on hard times.

In adulthood many of us also start to take on additional ‘burdens’ in the form of having children and beginning the whole cycle of ‘burden’ from a different perspective. By the time our parents age, many people simply don’t have the time or energy for another ‘burden’ in their life.

But what is this ‘burden’ exactly? Is it financial? Is it emotional? Or, when related to someone older, or someone ill, is it about confronting our own mortality? I suspect that for many people it is a mixture of many facets. Yet interestingly, despite the effect my dad’s dementia had on my life, I never saw my dad as a burden. In fact quite the opposite. I saw him as someone to love and care for in much the same way that he had loved and cared for me. It was a role reversal, but not a burden.

Of course not everyone views the concept of burden in the same way. In two recent meetings I attended the word burden came up twice. In one instance it was in relation to ‘carer burden’, a method of describing the effects of being a carer to a person with dementia. The other example came in a discussion about dementia, where a contributor suggested that if they were to develop dementia they would like the option of euthanasia to make sure that they didn’t become a burden to their family.

The point about euthanasia is too big for this blog post so I will tackle it at a later date, but the overarching theme from both of these references to burden is the perception that:

A) Caring for a person with dementia is a burden and

B) That the burden only ends when the person dies (and potentially not even then, given the problems that can arise when you are no longer a carer). This then leads into the thorny area of debating if we should hasten the death of the person.

This is a familiar portrayal, and for some people these feelings of burden are their reality – I wouldn’t seek to deny that at all. But I believe we do people with dementia and those caring for them a huge disservice if we only view a life with dementia, and a life caring for a person with dementia, through this stark, dark portrayal of burden.

My experience, and I only speak for myself here, is that rather than being a burden, my dad taught me more in the 31 years I had with him than I suspect I will learn in the equivalent next 31. Dad gave me so much, and showed me the way to use my life and his legacy to make a real and lasting difference to the lives of others. So, not so much a burden as a joy.

When I talk now to the people in my life who I love the most, and they (sometimes) express their desire to never become a burden to me, my reply is that in my mind when you really love someone that love supersedes any burden. For me, looking at a caring role in the context of love rather than burden is an infinitely more meaningful portrayal.

Until next time...

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A moving experience

Moving into a new home is always stressful. I spent most of 2014 trying to move house, and I can testify to why it is generally considered to be one of the most stressful life events, alongside bereavement, divorce, major illness and losing your job.

Fortunately, at the end of our very protracted move was a lovely new home, and even unpacking became strangely exciting – the thrill of finding new places to keep treasured possessions. Some items had to be given to charity shops, but the vast majority of the things that we have accumulated over the years came with us. From the day we moved in we were able to close our front door to peace and quiet, our own space, our own choices of food and entertainment and a life of domesticity that is exactly how we want it to be.

There is a another kind of moving house, though, that is altogether different. A move that is more traumatic than most and yet remains shrouded in stigma: moving into a care home.

It’s the kind of move that is often not of the person’s choosing (although sometimes it is), where your personal ‘front door’ is just your bedroom door, where peace and quiet and sometimes even privacy are at a premium, where you live in extremely close proximity to numerous other people, and where complete personal choice around food, entertainment and daily life isn’t the norm for everyone. Perhaps even more significantly though, it is a move that doesn’t involve packing up every item you have accumulated over the years, but instead forces you to choose a select group of possessions – only as much as will fit into your bedroom.

As if the stress of the move itself isn’t enough, a move into a care home often also brings with it elements of those other most stressful life events for either the person or their immediate family.

·       Bereavement:  As I wrote about in my blog post ‘Decisions, decisions’, care homes are perceived by some people as being ‘God’s Waiting Room’. I vividly remember in one of my dad’s care homes, a new resident arriving on the morning when a much loved resident had just passed away after a short illness. Although the new resident’s arrival had been planned for some time and their room was in a different part of the home, there was something very thought-provoking for that family: they were settling their loved one in as the undertakers were arriving to collect the deceased. If nothing else, it reminds you of the fragility of life. 

·       Divorce: For some couples who have been together for most of their lives, the day one of them needs to move into a care home and the other remains in the family home is one of unspeakable heartbreak. In some ways it could be considered even more upsetting than divorce because it is almost always a decision forced upon the couple, where neither wants it to happen and in any other circumstances neither would ever instigate it. No matter how many hours you go on to spend in that care home with your partner, you no longer live together:  your bed at night and your table for breakfast in the morning are now just for one.

·       Major illness: This is one of the main reasons a loved one moves into a care home, and it is often the fact that that illness has progressed that makes the move necessary, certainly in the case of a person who is living with dementia. For many families this can also go back to the point about bereavement, with many relatives feeling a huge sense of loss.

·       Losing your job: If you’ve been caring for a loved one who now needs specialist residential care, or indeed you can no longer cope as a carer, your loved one’s move into a care home - however much it may be needed - will permanently alter your way of life. You effectively lose your job as their primary carer overnight. For some people that may be a huge relief, but for many others it can leave them with feelings of hopelessness, lack of purpose and huge anxiety about how their loved one is being cared for in the care home.

Taking all of that into account, it puts the stress of the average house move - however stressful you think it is - into context. Moving into a care home isn’t just about changing your physical environment and leaving behind many of the items you have been surrounded with over the years; it also changes relationships and has an emotional element to it that you only really appreciate once you find yourself in that situation.

 

In many ways, I had that emotional toll softened by the fact that for the 3 moves my dad had into 3 different care homes over a 9 year period, each one meant a release from hospital, which was an infinitely more impersonal, regimented and clinical environment than any of those 3 care homes were. Had moving into a care home meant dad walking out of the family home, getting into a car and us driving him to a care home, it would have been far more emotionally difficult.

 

In my dad’s case the first move into a residential care home was possibly the most upsetting for him and for us – it came following a decision by dad’s care team that he couldn’t return home from hospital as he was considered at that time to be a danger to himself and others. The upset, however, was largely because of a fear of the unknown. We certainly weren’t sorry he was leaving hospital, and neither was dad.

 

The second move came after another spell in hospital, only this time dad had been there 3 months and lost half of his body weight. We just desperately wanted him to be in a more homely environment and be properly fed – it may sound a very basic aspiration but believe me, we were truly at our wits end with hospital care. The third move came at a time when dad was near the end of his life, and this time our desperation was for him not to die in hospital but instead to be somewhere as close to a home from home as possible.

 

And that’s the point, care homes really can be a lovely home from home if you are fortunate to find a good care home; a place where your loved one is happy and where together you make new friends that help you celebrate the happy times and comfort you in the sad ones. There are lots of negative stereotypes about what motivates families whose loved ones move into care homes, but being part of a care home community truly can be an enriching experience and, even if you are only an occasional visitor, it can be ‘Time well spent’.

 

For anyone feeling anxious about the impending move of a loved one into a care home, or indeed is feeling the emotional fallout (particularly guilt) after such a move, this Facebook status update from a lovely lady whose mum has just moved into a care home will hopefully make you smile as much as it made me smile when I read it:

 

“Just love the fact that I turn up to take mum out today and she tells me she can't because her friends will miss her, and then tells me to go home because she's busy”

 

Until next time...

You can follow me on Twitter: @bethyb1886

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