Finding love again

With over 200 blogs on D4Dementia now, some of them approaching 7 years old in May this year, 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 love.

I finished my January 2019 blog with a quote that talked about how a person who is struggling to express themselves, perhaps because of their dementia, is:

“Ultimately looking for understanding, appreciation and love.”

Of course that could be said for all of us regardless of the circumstances surrounding our health, but a diagnosis of dementia brings the importance of love and expressing love into an even sharper focus, as I described in my 2014 blog, ‘Amour’:

“Dementia taught me to tell my dad I loved him every time I saw him. I say dementia taught me because a diagnosis of a terminal disease makes it imperative that you make the most of every moment. There isn't time to be bashful - you will have a long time to regret what you didn't have the courage to say or do.”

But that isn’t to say it’s always easy to express love or feel love when dementia is part of life. Last year I met a lady who very candidly spoke about her relationship with her mother, who is living with dementia, saying that she found it very hard to love her mother now.

Many people might harshly judge this lady for a comment like that, but on further exploration it was clear it was a remark that came from a place of immense love and a longing for that love to be reciprocated. The lady felt bereft because of her perception that her mother didn’t love her, but when we reflected on her time with her mother, it became clear that she was missing very subtle signs of her mother’s love, purely because they weren’t the obvious expressions of it that she’d been used to her whole life.

This lady viewed the changes in her mother only through a negative lens. She spoke about her mother’s repetitive speech, her lack of interest in previous hobbies, how she no longer wanted to eat foods she’d always enjoyed and how she constantly walked, making her daughter feel that she just wanted to get away from her.

But we found a flip side to this. The repetitive speech was an opportunity for the lady to reinforce the information her mother needed, and that could come from a place of love if she realised the trust her mother was placing in her to provide that information in a calm and consistent way.

The lack of enthusiasm for previous hobbies could be interpreted as an opportunity to try new things, finding common interests that they could enjoy together, and likewise with trying new foods. We also talked about walking, and the joy that could be found in walking together, exploring the environment and taking notice of the details around them, something that is known to be very good for improving wellbeing.

Like many people, this daughter saw her mother’s walking through the negative concept of wandering (not a phrase I like or agree with), which is a topic I wrote about in my 2012 blog ‘Going Places’:

“Wandering suggests aimless moving from place to place without any clear objective, but that is not the case in people with dementia. I have written previously about the need to appreciate, understand and connect with a person who has dementia within the world THEY are living in. It may be a world from their childhood or their years as a youthful adult, it may be a happy place or a sad and worrying place. Wherever it is and whatever the circumstances, the person with dementia may well feel compelled to do certain things, and have great purpose and direction in doing them, however fleeting that may be.” 

For this lady’s mother, walking was something she needed and wanted to do, not something to be in any way suppressed as her daughter thought it perhaps should be. Supporting someone you love to do something that they love is in itself an act of love. Not one with big declarations or fancy ribbons attached, but one that is far more meaningful when you consider that many people who are living with dementia and want to do things like walking are prevented, sometimes forcibly, from doing so.

I think, and hope, that I helped this lady to find a different perspective to the one of desolation and isolation that she was feeling. Accepting that dementia sometimes changes our perception of loving and being loved is a tough realisation, but it is one that provides a degree of peace, and sometimes even hope – hope that you can still have those moments of connection with the person you love, however fleeting those moments may be, and feel that surge of emotion that only love can give you.

As I said in my Amour blog:

“During those difficult moments, the sadness, the emptiness, the emotional rollercoaster of being a carer, it's the love you feel that gets you through.”

Until next time...

You can follow me on Twitter: @bethyb1886
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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...

You can follow me on Twitter: @bethyb1886
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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...

You can follow me on Twitter: @bethyb1886

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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...

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