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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Remember me

My dad's legacy

Since 2012, this slide is how I have finished many a presentation at a conference or event. It's a simple philosophy, but a highly effective one at helping audiences remain grounded in the most vital aspect of any dementia-related discussion – the need to remember the person.

 

Remembering the person one of the topics of this year’s World Alzheimer’s Month (or World Dementia Month as I would prefer it to be called). For me, not a day goes by when I don't remember my dad, either through my personal reflections or through my work. I find that keeping my dad's memory alive, and helping others to learn from our experiences, is not only extremely cathartic but an amazing opportunity to help others that is really unlike anything else I could possibly do with my life.

 

I am mindful, however, that for some people whose loved ones have passed away having lived with dementia, remembering those relatives can be an acutely painful experience. We all experience dementia differently, and observe our loved ones through our own unique vision of them; for some people the pain, heartbreak and sadness is all they see and all they can remember.

 

Whilst I never deny the difficulties, sadness and heartbreak that accompanied my dad’s life with dementia - and actually frequently find that people would rather hear about those elements than the positives - it is the more positive aspects of my dad's life and care that I feel potentially offer the greatest insight, not least because despite all the awareness raising work that has happened around dementia, negative perceptions still outweigh positive ones.

 

For people whose loved ones are living with dementia now, if the positive messages don’t reach their ears and eyes, how are they to feel any hope, any sense of being able to live in the moment, and any way of appreciating how there are positive aspects to be found and enjoyed, if only you can find them and capture them, for however long they last?

 

Me and my dad

Without having those positive influences, so many families feel bereft, and often some family members will walk away from the person with the diagnosis. This leaves any remaining relatives to manage as best they can, and for the person with dementia to be condemned to feeling as though they’ve done something wrong. It’s no one’s fault that they develop dementia, but sometimes human emotions can be strangely mercurial in difficult circumstances.

 

I always feel immensely sad when I read about or talk to people who are really struggling to remember their loved one with dementia while that person is still alive. People sometimes hope distance brings closure, but if someone has been an important part of your life they can’t just be airbrushed out. Not everyone feels a natural inclination to stand by a loved one after a diagnosis of dementia, or indeed even just keep in touch, but some of those people perhaps just need a bit more support to see the difference they have the potential to make.

 

In my view, as networks, communities and societies we all have a responsibility here, because while the negative tidal wave of perceptions regarding dementia continues, it proliferates myths, intolerance and stigma, not to mention creating divisions that often wound people deeply, long after their loved one with dementia may have passed away. 

 

So, if you only do one thing this September for World Alzheimer’s Month, make it to put in that phone call, or write that letter, or make that visit, that says you haven’t forgotten a person you know who is currently living with dementia. And if you’re in the position I’m in with my dad and the person you loved is no longer here, think back, find that positive moment and tell people in your networks about it. 

 

We all have the potential to be the change we want to see, and from the smallest actions the greatest difference is often made. 

 

Until next time...

You can follow me on Twitter: @bethyb1886

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Humanity in care - The role of touch

One of the most controversial elements of care provision is touch. It has a discomfort associated with it for many professionals, and even family members can have deep reservations about touch. It can be associated with abuse, both by ignoring someone's need for a comforting touch or the more commonly made association of inappropriate touch. It is also a topic that us famously reserved Brits don't really like talking about.

Touching another person can happen in a variety of situations and for a multitude of different purposes. It can be the basic things, like a clasp of the hand when you greet someone, a hug, a kiss on the cheek, ruffling hair or brushing against an arm. It can be touch that is necessary to help a person with something, like personal care or eating and drinking. Touch can be used to support, comfort or reassure, but it can also cause alarm or anxiety.

Touch has an important role to play in dementia care for the majority of people who are living with dementia. Understanding the individual preferences of a person around touch is vital to ensure that you don't dismiss a person who seeks comfort, or distress a person who feels that touching them is an invasion of their personal space.

Against this backdrop, why do we have such a deeply uneasy relationship with touch, given that it is a natural part of life from the moment we are born?

For professionals, a lot of the issues around touch are about what is appropriate - there is an underlying fear that any intervention must be proportional for a particular situation and justifiable to anyone who may observe and question. Yes, touch is sometimes associated with inappropriate behaviour and criminal acts, but those incidents are few in comparison to the vast majority of instances where touch is giving support, comfort and putting humanity into care.

Occasionally, issues around touch can be rooted in fear about older people and advanced dementia. A good example comes from a particular interaction between my dad and an out-of-hours doctor. It was late on a Saturday evening when the doctor called to see my dad for a suspected chest infection. During the necessary examination, the doctor refused to touch my dad, instead issuing instructions to remove clothing and position dad in a certain way. I was appalled - the lack of warmth in that doctor's approach betrayed everything that was wrong with his bedside manner.

Fear of touch can also come from concerns about protocols. I remember seeing care workers walking past and ignoring a lady who was crying out to see her husband. When I asked why they were not comforting her, they said they weren't allowed to. I was horrified and couldn’t just walk on by, so I stopped and put my arm around the lady. We sat there for a while, she was crying, I was trying to be soothing. I can't prove my intervention helped, but I can say that if I had been that lady I would have felt considerably less alone as a result of a comforting touch.

Sitting holding my dad's hand was a standard element of all the hours we spent together, as was stroking his head or his arms. However, not all family members feel comfortable about touching their relatives in this way. Visiting a loved one with dementia can bring with it a raft of emotions, and as much as we don't like to talk about some of the more uncomfortable aspects, for some people this can include feelings of revulsion, of not wanting to become 'dirty' or 'catch' something. In short, not touching can be method of protection for some individuals.

At the other end of the scale are family carers, who find themselves thrown into an unfamiliar role that is inevitably going to involve a lot of touch. Having to cope with an increasing need from their loved one for help with personal care can be hugely difficult. Any care that involves touching intimate areas, such as changing incontinence pads or bathing, can be especially problematic, and even more so when the relationship is between a child and a parent, and where the two people involved are of the opposite sex.

So how do we become more comfortable about touch, and the vital role it plays in caring for people with dementia? 

A significant part of the answer to this lies within ourselves. Confronting our own reservations about touch is the first step towards feeling more comfortable about it. Reservations in relation to touching people with dementia can often be rooted in stigma - one of the most astonishing things I ever heard was the idea that somehow you might 'catch' dementia from touching someone who is living with it. Perhaps that is what that out-of-hours doctor was afraid of.

As a family member visiting a relative who is living with dementia, engaging in practical activities that may naturally lead to an element of touch - in terms of guiding or assisting the person with dementia - can help to make touch feel like the normal part of life that it is. If you are a family carer having to undertake increasingly personal touch-related care, knowing that you are doing things in the right way (for example techniques for moving and handling, washing and dressing etc) can often help to reassure the carer. That guidance could come from a district nurse or other qualified health or social care professional.

For professionals, I think touch will inevitably remain a difficult area. Some people can naturally incorporate touch into their care provision, and so long as that is done in a way that the individual receiving care is comfortable with, then it is a win-win for all. Learning to gauge that comfort level takes a degree of skill and experience, and guidance from other members of the team.

Most importantly though, it is about communication with the person you are caring for and observation of their needs and reactions. It's about being adaptable, and not assuming that what was ok yesterday is ok today or tomorrow. It is also about establishing relationships through continuity of care and reflecting on what is going well and what could be done better. 

In the end, touch is a human reaction, and hugely associated with our emotions. It is part of who we are, and as such it has to be part of the care we provide.

Until next time...

You can follow me on Twitter: @bethyb1886

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G8 Dementia Summit – Our time is now

 

Me and my dad in 1980...

...and 2011

The first ever G8 Summit on Dementia will take place in London today. A historic moment that finally demonstrates an acknowledgement from the world that dementia is THE global health and care priority that governments worldwide are grappling with.

Looking beyond the big vehicles of government and global politics that will dominate the headlines today though, and actually what I see is people. Most individuals in that room will be there because their job demands it, but when they leave their offices, get out of their ministerial cars and close their own front doors, they are first and foremost people.

I hope today’s Summit has a real humanity about it, because like every global focus on something that afflicts the body, it is about raw humanity. It’s about life and death, degeneration and pain, and the hope that we can do something better for people who are experiencing that now and in the future.

Whilst recording my personal experiences of dementia for one of the films that will be shown at the Summit today (you can watch my film here), I broke down in tears. Whilst I may cry in private in those moments that still sting me following my father’s passing after 19 years with vascular dementia, I have never cried in public whilst on a ‘work’ assignment. Professionalism demands that my message has controlled emotion, not the sort of breakdowns associated with those who are grieving – tears suggest you want sympathy, when actually I want action.

Yet in that studio the moment got to me in a way that no other moment quite had in a public arena. The cameras stopped, and looking back now, I wonder how many people who have lost a loved one to dementia had wished in those dark and difficult moments that the world could stop, just like those cameras did. Many of the people watching my recording were also moist around their eyes, on my journey home those emotions were still simmering under the surface, and even now as I watch the film I feel tearful.

Despite all of my public speaking engagements, nothing really prepared me for what sitting in front of those cameras, talking about my personal experiences of my dad’s dementia, would really be like. I hope that despite all of their years as hardened politicians, civil servants and business moguls that nothing really prepares the delegates at today’s Summit either.

If I could ask one thing it would be that everyone in Lancaster House today arrives with a clear mind and a willingness to embrace the message of humanity that I anticipate will be set early on by hearing the personal accounts of people who have dementia, and those who have cared for a loved one with dementia. My message, although sad, has hope in it too, and my wish more than anything is for that hope to shine through.

We need a fresh look at how we approach dementia. How we care for people living with it, how we support them and their families, and how we give everyone who is touched by dementia some of my hope. In short ,a strategy that goes beyond partisan boundaries and political colours and puts people with dementia and their families at its heart: an outcome that is about people and humanity.

In my mind it is also about delivering something that de-stigmatises and empowers people living with dementia and their families. I fear a rush of headlines that depict dementia in the same way that you would wars and disasters. I can tell you now, as someone whose father lived with dementia for 19 years, I largely avoided any dementia related media coverage in that time. That which I couldn’t avoid often demonised people living with dementia, yet my father was a loving, intelligent, family man, not some raging brute who needed to be caged and forgotten about.

Gravitas in the argument around dementia doesn’t come from using ever more extreme language in describing it. Nor does it make improvements in care and support, treatments, prevention and cure any more likely – if it did then they would be here by now. It comes from humanity. From seeing people with dementia as people. The politician who takes his children to visit their gran in her care home. The businessman whose mum has just had a fall at home and is feeling really confused. Me and my dad.

I don’t want to call the G8 Dementia Summit a once in a lifetime opportunity, because I believe the chance to make a difference exists every day, whether you are a scientist, a politician, a journalist, a medic or a care worker. Whatever profession we choose we are still people, subject to human frailty, and foolish if we are not mindful that if dementia doesn’t affect our grandparents or our parents, it might just affect us or our children.

Our time to make a difference is now.

Until next time...

Watch the live stream of the summit here: http://dementiachallenge.dh.gov.uk/

You can follow me on Twitter: @bethyb1886

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