Let's talk about dementia - Silence

Welcome to the seventh of my seven ‘mini’ blogs for UK Dementia Awareness Week 2013. They are all themed around talking about dementia, exploring different aspects of conversation from the point of view of people who are living with dementia, carers and families.

Day 7 - Take your chance to talk

I love talking about dementia, talking with people who have dementia or who care for someone with dementia – there is so much richness in each person’s experience that if you could bottle it, it would be priceless.

We often take the opportunity to talk to each other for granted, until it is replaced with silence.  I miss talking (often total rubbish!) to my dad. Now our ‘conversations’ are more one-way than they ever were – me recounting my news, asking for his guidance, wishing for his presence and always telling him I love him.

The silence we share now is not as beautiful as it was when he was here. When I could still hold his hands, kiss his cheek, and do all the little things that made him feel comfortable and loved. Now I long for the chance to have him in front of me and to be able to talk to his face again.

Never let the chance to talk to someone you love pass you by, even if you find the conversation difficult. They might want to talk about dementia but not know how to begin that discussion. They might have dementia and be feeling lonely and ignored. But whatever is said, be glad you can say it, hear it, and share those moments – they are what makes life, in all its guises, so unique and special.

Until next time...

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Let's talk about dementia - Love

Welcome to the sixth of my seven ‘mini’ blogs for UK Dementia Awareness Week 2013. They are all themed around talking about dementia, exploring different aspects of conversation from the point of view of people who are living with dementia, carers and families.

Day 6 - The power of love

So many aspects of living with dementia are highly individual and personal, but one element, vital to all life, that I believe dementia never touches is the need to love and be loved.

Who doesn’t want to be surrounded by love, and when we are at our lowest it can be like life-support for the soul. To me, love is about what you do more than what you say, but that doesn’t mean you never tell someone you love them. Every time I saw my dad I told him I loved him. Sometimes he didn’t react, other times he said it back, smiled or motioned to give me a kiss. Indeed my last words to him were about how much I loved him.

Whenever I have listened to people in the earlier stages of dementia talk about their life, one universal theme has been how much love they have for those who are supporting and caring for them. Brimming with pride, modesty and huge love themselves, they readily recognise, acknowledge and show huge gratitude to those whose love helps them to get through each day.

When dementia advances, and maybe the words dry up, unspoken love takes their place. A look, a squeeze of the hand or a peck on the cheek that says you mean the world to me, thank you for everything.

Next post on 25 May 2013.
Until then...

You can follow me on Twitter: @bethyb1886

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Let's talk about dementia - Humour

Welcome to the fifth of my seven ‘mini’ blogs for UK Dementia Awareness Week 2013. They are all themed around talking about dementia, exploring different aspects of conversation from the point of view of people who are living with dementia, carers and families.

Day 5 - Better to laugh than cry

I have encountered many amazing people with dementia who incorporate humour into living with the disease. That’s not to say that they find the distasteful jokes about dementia funny. They don’t, and those jokes really aren’t funny to anyone who has personal experience of dementia, but humour that lightens the load for the people with the heaviest burdens is a priceless gift.

Dementia’s naughty side can produce words from lips that had never previously uttered such language. Those moments of confusion, misunderstanding or using the ‘wrong’ words can bring smiles and laughter, both for the person with dementia and those who they are interacting with.

Finding humour is an important element in helping someone to live well with dementia, and for the person themselves it is often far better to laugh about something that they are finding challenging rather than getting angry. Making light of difficult situations can remove those feelings of inadequacy or guilt at not being able to do something.

Laughter, as they say, is a great medicine, so take those opportunities to talk, joke, smile and laugh together to find the happiness and wellbeing that most people never associate with dementia.
 
Next post on 24 May 2013.
Until then...

 

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Let's talk about dementia - Frustrations

Welcome to the fourth of my seven ‘mini’ blogs for UK Dementia Awareness Week 2013. They are all themed around talking about dementia, exploring different aspects of conversation from the point of view of people who are living with dementia, carers and families.

Day 4 - The frustrations of living with dementia

Living with dementia, especially when you have awareness of what is happening to you, is inherently a very frustrating experience.

You want to get on and do things, say things, go to places and meet people. Yet your brain can’t keep up, bits of the jigsaw of daily living are missing, and you feel limited by being unable to remember the how, what or why of things you previously accomplished without hesitation.

It's a heavy burden, but it would be a lot easier to bear if it didn’t come with the most irritating aspect of living with dementia: dealing with people who just don’t understand. The shop assistant or fellow customer who is impatient for you to remember your pin number, or not hesitate trying to find your change. The passer by who won't stop to help you find your way, or the person on the phone from the utility company who is demanding information that you cannot recall.

Talking to a person who has dementia should be about dialogue on their terms, not on yours. It should never be about adding to their frustrations; it should be a conversation that brings calm reassurance, comfort and sees them as a person, not a disease.

Next post on 23 May 2013.
Until then...

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Let's talk about dementia - Surprises

Welcome to the third of my seven ‘mini’ blogs for UK Dementia Awareness Week 2013. They are all themed around talking about dementia, exploring different aspects of conversation from the point of view of people who are living with dementia, carers and families.

Day 3 - Prepare to be surprised

Ask most people what they think living with dementia would be like, and they assume it’s a life of inability and dependence. Those of us who know otherwise just want to scream, “People with dementia can still do things!”

More importantly, people with dementia still WANT to do things. Stepping in and doing everything for them, without stopping to consider, asking or trying to see what they can do themselves removes their independence, and is actually likely to make their deterioration with dementia more rapid.

An example of this is my dad in the later stages of his dementia. To a casual observer he was incapable of doing anything. Most days he needed to be helped to eat, but some days he could, when encouraged and not rushed, pick up the spoon and feed himself. You might think, what’s the point? Just do it for him. But by doing it himself he proved that not only did he have the ability and dexterity, but most importantly of all, he had the desire to fuel his body to keep going.

So next time you are with someone who has dementia, give them the opportunity to surprise you. Allow them to experience achievement, and when you talk to them, let them know the joy of being praised.

Next post on 22 May 2013.
Until then...

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Let's talk about dementia - Questions and answers

Welcome to the second of my seven ‘mini’ blogs for UK Dementia Awareness Week 2013. They are all themed around talking about dementia, exploring different aspects of conversation from the point of view of people who are living with dementia, carers and families.

Day 2 - Asking questions, finding answers

Developing dementia often brings many questions. What is dementia? Why me? What does the future hold? How will I/we cope? HELP!!!

Asking questions is natural. Finding the answers is often much harder. Sometimes there isn’t an answer. Sometimes you have to accept that you will never really understand something, which is one of the hardest aspects of living with dementia. Some of the finest advice I was given, and have passed on many times, is to ‘live in the moment’ with dementia – whether you are the person who has developed it or those closest to them.

19 years with my dad’s dementia didn’t answer all of my questions. I found that the questions that represented my deepest raw anger and grief didn’t have a definitive answer, and still don’t. But I was lucky - for all the questions I could articulate, and issues I could explore with family and friends, think of all the questions that my dad must have had that in the end he couldn’t find the words for.

Talking about dementia means letting rip with our questions as often as we need to and, in the case of someone with dementia, whilst they are able to… and when you think you don’t have the answer, remember, you can always just live in the moment.

Next post on 21 May 2013.
Until then...

 

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Let's talk about dementia - Truth

Welcome to the first of my seven ‘mini’ blogs for UK Dementia Awareness Week 2013. They are all themed around talking about dementia, exploring different aspects of conversation from the point of view of people who are living with dementia, carers and families.

Day 1 - The truth about dementia

There are so many misconceptions about dementia. It’s a disease of the old. Developing dementia means your life is over. People with dementia are worthless to society. People with dementia want sympathy.

I believe that we do everyone living with dementia (over 800,000 people in the UK alone) a great disservice every time we talk about dementia inaccurately. Every time we assume it only affects people in their 70’s, 80’s and 90’s we ignore the people in their 40’s, 50’s and 60’s with dementia (and those even younger). Every time we use language like ‘sufferers’ and ‘victims’ we disable people with dementia. Every time we think that the answer to dementia is to lock people away and ignore them. Every time we offer patronising sympathy rather than positive support.

The truth about dementia is that it’s the greatest mixed bag of experiences and emotions that you will probably ever encounter, whether you are the person living with it or their family, friends, neighbours, work colleagues or old school mates. When someone develops dementia it affects everyone in the network around them, a network that has built up over their lifetime, however long or short that has been.

More people than ever before now know someone with dementia, love someone with dementia and want the best for that person. So let’s talk about dementia. Together we have a powerful voice. Alone we are not always heard.

Next post on 20 May 2013.
Until then...

 

You can follow me on Twitter: @bethyb1886

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