What to do for 'the best'

Last year I wrote a popular blog post entitled ‘Five things I wish I'd known before my dad's dementia’. Point two was entitled ‘What to do for the best’ and said:

"The great problem when my dad was living with dementia is that I wasn't a researcher, or an observer of all things 'dementia'. I never Googled what other people's dad's who were living with dementia really enjoyed. Nor did I attend dementia groups, access social media extensively, or read dementia books or blogs (so the fact that you are reading this means you are one step ahead of where I was!). 

I learnt what worked for my dad eventually but it was often through trial and error, and when I think back so much time was wasted. For example, I would never have persevered with ensuring my dad had TV in his room: in hindsight I would have scrapped the TV on day one and replaced it with the CD player and music collection that brought infinitely more joy to his life. I’d have made the environmental changes that personalised dad’s room much quicker, and the life story work staff asked for my help with and I took ages to dig out photos and make the memory box, I’d have done that quicker too. 

We'd buy things, like CD's, for birthdays and Christmases thinking it was nice to space out the gifts. Big mistake. Dementia is terminal, you are 'on the clock' as it were. Get as many lovely things as you can afford and enjoy every single one of them as soon as possible so you have them for as long as possible. My dad was never into big birthday or Christmas celebrations, and looking back maybe he was onto something with that."

I often receive emails from family members outlining their situation and asking me what to do for 'the best', and my ‘Five things I wish I'd known before my dad's dementia’ post prompted a few more of those emails, so here are my thoughts on what to do for 'the best':

Don’t beat yourself up

Wanting to know what to do for ‘the best’ is a really common feeling that most of us have in relation to a variety of situations. A natural human instinct is to want to avoid getting things ‘wrong’, but when I was growing up my parents always said: “He who never made a mistake never made anything.” There is no such thing as the perfect way to support a loved one with dementia, so don’t beat yourself up.

'The best' in your situation is unique to your situation

Whenever anyone asks me what is for 'the best' in relation to their loved one with dementia my opening suggestion is always to remember that ‘the best’ in your situation will be unique to your situation. My best, your best and everyone else’s best is entirely individual to them. This phrase really underpins that: “When you’ve met one person with dementia, you’ve met one person with dementia.” Ultimately, there is no definitive rule book on what the best care and support looks like - I was guided more by instinct than knowledge, and sometimes that’s no bad thing.

Sometimes a desire to do our ‘best’ can lead to our worst

Reading the accounts of people living with dementia in the last few years has made me realise that as care partners we can unintentionally become very caught up in the desire to do our ‘best’, sometimes stifling the person with dementia, disabling or disempowering them, which is far from 'the best' for anyone but hard to recognise when we are living in the moment. I’ve only really learnt this lesson as a result of following the work of empowerment groups like DEEP and DAI, realising the 'I'm doing this for the best' trap is easy to fall into and one I fell into myself with my dad sometimes.

As Wendy Mitchell says in her book, 'Somebody I used to know':

"They were one of those typical couples, the ones where the wife takes the lead; she takes his coat from his arms, she folds it over, sits him down, checks on him - once, twice - then goes off to fetch a cup of tea. I see it a lot, wherever I go. I know they're only trying to help, so why does it always look to me as if these husbands - or wives - are so much more advanced in their disease than me, someone who has no one to fetch and carry for me, to finish my sentences, to decide that I can't even manage the small chores that are still very much physically and mentally possible."

Being the best YOU can be is enough

I was by my own admission far from perfect in supporting my dad, but I was the best I could be, and I’ve realised since dad's death that you can be no more than that. When dad was alive the decisions came thick and fast, from small things to big things and everything in-between. I would constantly wonder, “Is this for the best?” about everything from signing a consent form to deliberating about medication, or taking the ‘risk’ of supporting dad to eat when healthcare professionals questioned if he could cope with anything orally due to his dysphagia. Comparing yourself to others, as I’ve known some relatives to do, will only lead to feelings of failure, or the opposite - an exalted view of how great you are at supporting your loved one. Neither is helpful. This quote sums it up perfectly:

Coping with the feeling you haven’t done your 'best'

Sometimes I run information and knowledge session for the relatives of people who are supported by care providers. These often involve a lot of sharing of our individual stories, and sometimes become understandably very emotional for all of us. One of the biggest contributors to not feeling you are doing or have done 'the best' for your loved one is when professional care and support is needed. My view: asking for help doesn't mean you're a failure. We desperately need to move away from the rhetoric that being a family carer means doing everything for your loved one, alone, for the rest of their life, no matter what. Doing your 'best' should never be a byword for burning yourself out.

Until next time...

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Challenging stereotypes about families and care homes

Ask a cross-section of individuals what they think about care homes and you will often hear negative views of both the homes themselves and the families whose loved ones live in them. Having a relative in a care home has long been seen by the ill-informed as some sort of bypassing of responsibility, but for the majority of families that couldn’t be further from the truth.

Embarking on the heart-breaking process of finding a care home, and then trying to adjust yourself and your loved one to this new way of living, isn’t quite the throwaway experience that many people - including some of our politicians - have portrayed it to be. As someone whose dad lived in 3 different care homes over a 9 year period, the suggestion that we as a family somehow negated our responsibilities towards him infuriates me.

Neither my father nor us as his family were given a choice about dad’s care: his doctors decided that he would be a danger to himself and to others if he returned home after hospitalisation for a larger stroke that had led to a diagnosis of vascular dementia. Without a health and welfare Power of Attorney (such a document didn’t even exist then) or any advanced care directives, we were powerless to change that decision, although I don’t actually believe that the doctors were wrong in their assessment.

As a family we knew virtually nothing about dementia, and there was precious little support for us in trying to understand how best to alleviate my father’s symptoms and provide him with the best quality of life possible. With dad utterly miserable in hospital, it was an immense responsibility to be charged with finding him a care home. Like many families, we had no idea what we should be looking for and moved from visit to visit almost in a daze – arguably we were as lost and bewildered as poor dad was.

Against this backdrop, imagine feeling the need to justify yourself to people entirely unconnected with your own situation who feel it is their right to sit on the moral high ground and verbally punish relatives for talking what is seen by some as an ‘easy way out’. Moreover, those who proliferate this view only serve to further stigmatise care homes at a time when they have taken an immense public bashing.

Perhaps most worryingly of all though, is that by stigmatising those who seek help to care for a loved one we are in danger of making carers – that most isolated and undervalued group of people – even more isolated. We know that carers desperately need more support but many don’t feel that they can ask for help. They fear being seen as someone who ‘can’t cope’, and feel guilty at the prospect of asking for some respite for fear of the effect on their loved one. Yet no one can carry on caring alone forever without it having potentially very serious consequences for their own health, and in turn the welfare of the person that they are caring for.

There is also a particular stigma that many families from minority ethnic backgrounds face. Their culture is rooted in caring for ageing relatives at home and in private, but at the same time they are living in a UK society that has incompatible expectations and priorities. Often in Asian countries, different generations of a family are likely to be living in the same accommodation and can share the caring duties – both when nurturing the younger generations and helping the elders. The women will usually remain at home to perform these duties and can support each other.

In the UK, women increasingly need to work in order to contribute to housing and living costs, generations often live apart (and in the future more people will age as single adults with no children), and whilst there is support from employers for parents with young families, support for those who are caring for ageing relatives is severely lacking. Many families also feel very ill-equipped to take on a caring role, especially if someone becomes very frail or has advanced dementia. If they make mistakes, or a lack of specialist equipment leads to an injury or accident, those feelings can be compounded.

At the very least most families will end up needing a level of domiciliary care in order to look after a relative and continue to work, and many will eventually need a care home if the person’s needs become very complex. Ultimately, of course, that decision can also be taken out of the hands of families by health and social care professionals. They are duty bound to act in the best interests of the vulnerable person, and indeed a carer who they may have identified as someone who can no longer go on providing 24/7 care, particularly if that carer is older and in poor health themselves or has more than one person to care for.

So the idea that somehow families are abandoning their loved ones, en-mass, to abusive sub-standard care homes is wholly wrong. For a start most care homes are actually staffed by very caring people who do a wonderful job, as I spoke about in my recent film for Care England. In the minority of homes where that isn’t the case, it is completely abhorrent to take the view that families have ‘got what they deserved’ and if the care isn’t good enough that they should ‘do it themselves’.

Social care has, for a long time, been part of the fabric of UK society, and rather than trying to reverse that model we should be embracing ways to use it as creatively as possible. Ensuring that everyone has access to good quality care, be that short-term respite or long-term care, is vital for a healthy and vibrant society. When care is caring and compassionate, it can be a breath of fresh air into the lives of all that it touches.

I also believe that we need to stop looking at care as ‘them’ and ‘us’. Care, in all settings, should be about professionals and families working together, sharing knowledge and experiences. With an ever-increasing ageing population, my view is that this will need to become the norm if everyone - be they a person needing care, a family or a social care professional - is to cope with this new reality.

Until next time...

You can follow me on Twitter: @bethyb1886

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The best of your ability

As regular readers of this blog will know, I am very candid about dementia and the experiences my dad had during his 19 years with this disease. It should come as no surprise then that this post is on one of the most sensitive subjects in dementia care, and one that has polarised opinions amongst many people that I know. Indeed the merits or otherwise of it divide clinicians, therapists and relatives alike – everyone searching for the ‘right’ answer.

As human beings most of us are conditioned from a very young age to answer questions 'as is' and as so many application forms tell us in our adult life, ‘To the best of your ability’. So when you are faced with a relative who has dementia and is asking you a particularly sensitive question, what do you do?

This conundrum is one that most people who have a loved one with dementia will face at some point. In that moment you have to decide whether you should answer as the current reality demands, even if you face bringing upset, disappointment, pain and anguish to someone you love very dearly, or whether you should in some way manoeuvre yourself around the subject by either avoiding an answer or answering in a way that does not involve direct facts - in other words, you validate the person's beliefs rather than enforcing their orientation into the current reality.

How you approach this situation depends on some key considerations. Firstly your knowledge of your loved one is vital – there is no greater moment for personalisation than this one. Secondly your understanding of their dementia – if you have been with the person throughout their journey with this disease you will have become accustomed to their reactions (even if sometimes this proves to be completely irrelevant when their dementia surprises you). Thirdly your views - instinct is very important, but it has to be measured against the situation you are in.

Many people wrongly approach this subject from a viewpoint established within their world - reality orientation - completely forgetting that the person with dementia is living their life is a world that is very different, and you should be aiming to support them there, not try to drag them into your reality. This approach is a vital part of reminiscence therapy, something that I wrote about here, and whilst pursuing memories of the past can occasionally lead into difficult enquiries, do not be put off from exploring the benefits reminiscence can have just because you want to avoid any possibility of having to negotiate awkward issues. In my experience those moments come around regardless of whether you are actively reminiscing or not, therefore it is far better to simply be prepared.

When it comes to answering sensitive questions, that timeless ‘To the best of your ability’ phrase says it all. You may have the ability to answer an enquiry on the whereabouts of a parent, partner or sibling who passed away many years ago, but for me the decision on whether you should do that rests on what is in the best interests of your loved one. Will answering this question in the current reality give the person peace and reassurance, or will they be asking the same question repeatedly, and in doing so and hearing the same news every time, just relive that grief-stricken moment over and over again.

Enquiries about deceased relatives may not be the only obstacle you have to overcome either. Equally awkward candid moments can come from questions such as, ‘Am I losing my mind?’ ‘Am I dying?’ ‘Why am I here?’ Answering yes to the first two could again create huge distress, and in answering the last one, telling your relative repeatedly that they have dementia when they may be from a generation that associates that word with very negative images of asylums and appalling treatment, is going to create fear in someone who may not have the ability to articulate that emotional response and feel inwardly wretched as a result.

Pure reality orientation can be a very brutal business, and in dementia care, where gauging the person’s understanding can be such a tricky task, it is a bit like roulette – you just never know how the information will be received, the implications of it, and whether you will be asked to supply it frequently thereafter. These dilemmas do not end with having to deal with difficult questions either. Making a judgement about passing on emotionally-charged information can be similarly challenging.

During my father’s dementia both of his sisters passed away. On each occasion we received the news, we had to make a decision about whether to tell dad. On both occasions we never told him. Whether that was the right decision or not we will never know, but I do know that it saved him unnecessary heartache. 

We had some old sepia photos of dad and his siblings when they were in their early 20’s, and those pictures always brought a positive reaction from dad. Realistically, he remembered his sisters as those vibrant young women with their lives ahead of them. He lived out memories of growing up with them, taking them to the theatre, and being their protective brother. News of their passing would have been, for him, about those young women dying, not the reality of elderly ladies passing away having had families, lived their lives and been happy. So we spoke of his sisters in the context of dad’s world, reminiscing about the things that they had done together, smiling and laughing as we recalled events.

Ultimately no one can tell you whether validation or reality orientation is the right choice for your loved one in any given situation. What I can tell you is that while some people view the validation approach as lying, I never once felt that in sidestepping my father’s questions or not imparting information that I was lying to him. Protecting someone you love from the harsh realities of your world so that they can remain as comfortable as possible in theirs is, in my opinion, never about lying.

Until next time...

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Dementia’s emotional rollercoaster

Living with dementia is one of the toughest challenges any family can face. Emotions become raw and brutally exposed, and the constant question of, “Why did our loved one develop this?” is a harrowing, often daily, exercise in trying to understand that which cannot be understood.

Amongst the many families I have met going through their own unique dementia journey with a loved one, some common emotional themes have developed, five of which I am going to explore in this blog. Interestingly, given that many people feel dementia takes away the closeness they once had with their loved one, all of these emotions are common in the person with dementia too, so maybe we are not so far away from each other when it comes to the deepest feelings after all.

DENIAL

The early stages of dementia are, for many people, all about hoping that what they think is happening is not actually happening at all. They want it to be a figment of their imagination, an over-reaction to some erratic, worrying behaviour that they have experienced, a normal part of ageing, or a case of the person in question being far too educated, important or active to develop dementia.

The belief that this happens to ‘other’ people can become a huge obstacle in seeking help when someone is struggling with symptoms that are affecting their daily life, but it must be borne in mind that this disease is no respecter of background, education, career attainment or personal success. From the wealthiest, most influential people, to those who have struggled all of their lives to makes ends meet; dementia can strike anyone. There is no shame in it, and no reason to hide no matter how much pride you feel.

My father went 10 years without a diagnosis, but at a very early point when his symptoms became evident to a non-medical lady who clearly knew far more than we did, her view was that he was in the early stages of Alzheimer’s. Our reaction was something along the lines of, “What on earth is she talking about?” followed by, “She can’t possibly be right.”

LACK OF UNDERSTANDING

Denial often goes hand-in-hand with a lack of understanding about what exactly dementia is. When dad’s diagnosis finally arrived in many ways it joined up the dots, and everything that had happened in those previous 10 years suddenly had an explanation attached; except that we still did not really know what on earth dementia was.

At that point you then find yourself reading up and trying to understand, questioning the professionals charged with your loved one’s care, and almost secretly hoping that they are wrong and everything will go ‘back to normal’.

Of course that does not happen, your understanding slowly grows over the years, and your ability to spot the early signs of dementia in others (just like the lady who thought that dad had Alzheimer’s) becomes very finely tuned. A true grasp of dementia, its twists and turns, vagaries and anomalies, frustrations and yes, even joys, only comes with the time the journey with this disease takes.

FEAR

Families often put off getting a diagnosis out of fear for what dementia will mean for the future. Fear of the disease is one of the biggest obstacles in tackling it because it feeds stigma, prevents understanding, and leaves people feeling helpless and not in control; effectively it puts you in a vicious circle.

Confronting your fears by seeking a diagnosis is not easy. You may not even have a choice in the end – we didn’t. Dad’s diagnosis came by chance when he had been admitted to hospital after collapsing at home from a stroke. At the time our fears were for his physical condition; we were coping with the shock of finding him on the floor and the worry of whether he would get better.

After all that, in some ways a diagnosis was a relief but the fear does not automatically go, in fact it often gets a lot stronger. Once you realise that dementia is a journey you will be going on whether you feel prepared (you won’t) or not, fear can regularly creep into your everyday life. For me, however, as dad’s dementia progressed, fear of the disease was replaced by fear of the phone call to say that he was ill with a chest or bladder infection and needed urgent medical care.

A SENSE OF LOSS

This is one of the most common, reoccurring, and troubling emotions that families going through dementia with a loved one experience. You feel you are slowly losing the person you knew, you cannot communicate or do the things together that you used to, and you are effectively grieving for your loss whilst your loved one is still alive. It is all the more distressing when you confront the realisation that as dementia is a terminal illness you will, at some point, grieve all over again.

It has been said that in dementia the mind passes away long before the body does. It is a profound statement but one that does not take into account the power personalised, compassionate care can have in helping those living with dementia to express themselves and maintain the bonds that they have with their family. Even when you become accustomed to dementia, if indeed you ever do, I won’t pretend that dark days do not happen when you feel overwhelmed with sadness, grief-stricken and helpless, but care that enables your relative to feel reassured, loved and valued will bring many more happy days than sad ones.

GUILT

This is an emotion that so many families experience if the time ever comes when their relative needs to go into care. At this point families have often been struggling on at home, trying to care for their loved one, or a crisis point has occurred that means residential care is the only viable option.

Whether you have been caring for your loved one day in day out, or you have lived miles apart and been wracked with guilt that you have not been able to do more for them, moving someone so precious and loved by you into a communal establishment can feel life-changing. It can also seem like the final step in accepting that your relative is battling a disease that means that they need an extra level of care, and that this may well be their final home.

The guilt that you cannot care for them for whatever reason can be very troubling, and often goes side-by-side with massive concerns about whether you have done the right thing, and how your loved one will adjust and be cared for. As in all things related to dementia, however, I have always felt that the disease persecutes enough, without adding additional punishment on yourself. Never be hard on yourself or your nearest and dearest; you will need each other and all the strength you can muster in the weeks, months and years ahead, and crucially, your loved one with dementia will need everything you can give them too.

Until next time...

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