Legacy and Lessons

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The gift of living well

“God gave us the gift of life; it is up to us to give ourselves the gift of living well.”
Voltaire
“And so my friends we’ll say goodnight, for time has claimed its prize, but tonight will always last, as long as we keep alive memories of paradise” – Styx
Conversation with nan in the lead up to the chat:
Me: Do you think you have a good quality of life?
Nan: “yes definitely”
Me: “do you think you live well with dementia?”
Nan: “yes”
Me: “why is that?”
Nan: “because of the way i feel, i feel quite happy and content”
Me: “what do you think contributes to that”
Nan: “You’re the biggest thing-so helpful and thoughtful…if I have anything i want to get straight i ask you because i know i’ll get a proper answer from you not some made up thing. I get the truth”
Me: “do you think its important to carry on doing things you love with dementia?”
Nan: “definitely if u didnt have things to do or people to talk to you would go downhill very fast”Living well with dementia:

Our most recent #diversealz chat on Twitter was concerning living well with dementia. And this week we had a special VIP guest. My nan. I thought, who better to ask about how to live well with dementia, than the woman sitting next to me? My first question to nan was do you think you live well with dementia. I replied, so why is that? What contributes to it? Nan gave me a massive grin and said “well that’s easy. You”. Which was lovely of course but not really an answer I was looking for, I was kind of hoping for things we could give other people. I’m not sure how far I could stretch!

My initial point was that we shouldn’t be having to have this discussion. Living well with dementia is something that should be public knowledge, from those who are the “experts” given to those of us who experience it and its effects day to day. It’s a shame that despite so many people being diagnosed with dementia, the public still have no idea what it really is, or how they can help someone with dementia.

Many people can live well with dementia, for as long as it allows, just like any other illness. Some think that as soon as a person is diagnosed, the person has changed, wrong! They are still the same person, still love, hurt, remember, not always memories, but feelings & want to live well.

What does it mean to live well with dementia?

It means helping our loved ones lead a fulfilled, independent, stress free life even with dementia
The best way to find this out, is to talk to and listen to people with dementia. On what they want! Otherwise it helps to have a carer who knows the caree well and can understand their wishes, even when the caree cannot express them.
Living well with dementia is adapting to their needs, yet maintaining a sense of normality.

What are some of the ways people can live well with dementia?

People can live well with dementia with the right amount of help and support from others, in order to live as independently as possible, or as much as they want to. It was also pointed out that some may not wish to live independently, and may thrive in group situations. Nan thinks it depends on the people around the caree, on if they can live well w/dementia, says they have to be helpful & understanding.

By not letting dementia define who a person is. Who you are. See the person, not the condition.
Keeping safe and happy is a key factor, joy and laughter, stimulation. Still doing those things you enjoy.
Communication is key. Everyone has a part to play and it is everyone’s responsibility.
Keeping busy by doing different things to keep mind active. And also keeping physically active.
Keep things interesting, safety, security, happiness, independence, activity, perceived normality
Life story projects can boost confidence and creativity, giving a platform for communication
There are quite a few from sensory environments and music to iPads and tablets, all can help
I’ve heard games (especially chess), music (especially piano) and maths use brain in helpful way

How important is a can do attitude?

Nan says she fights things, so she tries not to, let it get her down. I think that helps. She says she doesn’t believe in feeling sorry for yourself, you’ve got to fight it. You can be happier if you fought than give up”.

Do you think its important for people to have a role?
We all agreed, as we have in the past that having a role, a part to play, something to focus on is helpful in living well. Not only for someone who has dementia but for all of us. It can help maintain our self esteem. Using past experiences, memories and roles can help. We heard stories about people who were gardeners, watch makers, cooks, nurses who all took back these roles and so were able to live well with dementia. For nan, she always seems “better” when she is able to take on a nurturing role, looking after me, or the cat.

At the end of day, is living well synonymous with enjoying your life or having a decent quality of life?
Nan says that we want all of these things from life. And she feels lucky that she has them all. She says that the most important thing is to live life and enjoy it, even if things are wrong with you, get above it. That gives you quality of life. I agree, in order to have a good quality of life, you have to live well. And if you live well, it’s more likely that you will enjoy life. Whether you have dementia or not.Do we need to see examples of people living well with dementia whatever that means?

Yes! This is essential to end stigma. There are people with dementia who are changing perceptions of dementia, in a really huge way. Kate Swaffer and Norman McNamara are just two such examples. They show us you can live well with dementia and I think we need to see more of this so the public become less scared of it, and can approach it better. Kate says she has learned a lot about life since she was diagnosed, and in some ways it has become a gift. And nan has taught me so much about life, and her diagnosis has taught me as much about myself, as it has about nan, and the outside world that I think others need to be more open about it. It is possible to live well with dementia, and we don’t need to be scared anymore.

Reading material:

Christine Bryden – http://www.christinebryden.com/
Still Alice.
Look up the University of Tasmania MOOC Understanding Dementia free online course.
communication group – http://www.sonasapc.ie/
http://www.lshtm.ac.uk/newsevents/news/2013/dementia_care_project.html …

Parting words from Nan:

“Make the most of your life and don’t get depressed at all. Try & live a good life by doing the best you can”

Finding Positives

“If you want light to come into your life, you need to stand where it is shining.” – Guy Finley

A while ago we had our usual #diversealz chat on Twitter, this topic was looking at the positives. This chat could not have come at a better time. I was feeling particularly grumpy and sad, so had to dig really deep to think of things to contribute. But as usual once I started, I couldn’t stop. And so I hardly saw what everyone else had written! Reading it back so I could do a write up certainly made me realise we have a lot to be thankful for. I’ve done this one in the form of a q and a, as it is late coming out and I was desperate to get it finished. If any of you have any additions or comments, please use the box below, or tweet me @wandererkirsty , or find my page on Facebook livingwithdementiablog 🙂

What has diagnosis or interaction with dementia taught you?
I’m more out of the box than ever now
Selflessness is something learned
you can see a strong community and also learn about what is possible
it’s taught me to think outside the box to find solutions
its taught me to think outside the box
its taught me that sometimes things are just shit. And that’s o.k
it’s taught me to think less selfishly
it’s taught me that we’re never alone
it’s taught me that there are some truly amazing people out there who are willing to help anyone and everyone
My take is if you don’t try to find some positives from somewhere, what have you got?
Many negatives, but if positive focus employed, results can be much better
and how little things can help with encouraging positive moments.
A year ago, no tweeting, blogging etc, now I share what I’ve learned, to help others
knowing how there are positives sometimes has spurred me on to let others know to look for them too.

Are there any positives for you, or for your caree with dementia?
mum lives in a happy little bubble most of the time so guess that’s a plus side
depends how long unaware, can make it seem worse when they have awareness moments
Big positive has to be the g8 summit on #dementia, global attention and input from world leaders
tough one…guess it unites some families as Carers but not all..
sharing a passion with the other #purpleangels and knowing we can teach others
positives are love and affection shown to those who care, and keep them safe
feeling part of a community
learning to live in the now to join NANs reality
More positives, the joy and laughter that can be shared, smiles and memories
learning to voice my emotions. Letting nan know i feel sad, and having her snap back to hold me
A1 learned from Uncle with Alz, what I could do to help Mum with VaD, so that must be a positive
given me a new purpose in life must be a plus too?
oh. Duh. Biggest positive getting closer to nanme too
so that’s a huge plus as stimulates both the Carer and cared for
good and bad bits of anything in life but coping with dementia teaches us to be stronger and tougher
Mum hasn’t got a clue what’s wrong anymore, life is just normal so far as she is concerned
gave nan a positive that she was only in hospital a few weeks with broken hip as dementia forgot she done it so recovered quick
Positives for Mum, she’s happy, safe, contented, though she doesn’t know what’s wrong, she knows she’s looked after, many aren’t

Do you always need to be positive?
no. It is impossible and exhausting to stay positive all the time
there has to be a part of you that knows you can carry on fighting, but I think we all need to..
…be able to say life is shit sometimes. And it’s ok that I can’t see past that for now..
but we know from experience that after the pit there’s a brief patch of light. That’s what…
I’m plodding towards ATM  that moment where nan laughs or does something that makes life ok

How has it compelled you or others to make a difference?
inspired me to be who I know I am..strong determined and caring enough to fight for those who can’t
Simple, use my creative and military experience to help in any way I can – two unusual combinations 🙂
Just compelled to help in whatever way I can, sharing what I’ve learned combined with past experiences
made me want to save other Carers from the fears of not knowing who to turn to for help
I would never have chosen this path however I relish it most days as I know I am making a difference

Dementia Friendly Language

Dementia friendly language: Stigma and Normality.

A little while ago we had a diversealz chat about language and dementia, which was triggered by our host having heard about a conversation where people living with dementia were describe as not “normal”. From a care worker especially, this is loaded, unhelpful, patronising and certainly makes me and others question their role, and suitability for care. We would expect more from professionals who should be measured. But from anyone we all agreed this term is unacceptable. The reason I think we all found this so offensive was summed up by one chatter “”not normal” implies not being accepted as part of “normal” society”.

One lady we spoke to has experienced the word “gormless” when a manager was actually trying to convey “disorientation”. This itself brings up problems. We all struggle to find the right word, but there are so many “trigger” words that in themselves can be construed as offensive. So what then? We mustn’t be scared to attempt conversations for fear of insulting, but we must think about words that may offend the audience and how to avoid “having” to use them. The lady who heard this told us that a majority of the time the most harm/offence comes from when trying to describe an individual’s behaviour to another.

These examples show us that ignorance still exists, even in those who should know better. And the way to solve this? All health care professionals to have training in dementia, regardless of the setting they work in. (Personally after my and nan’s experiences with the red bank I would suggest that anybody who has any sort of contact with the public should be receiving some form of training in dementia awareness. In a way that makes it accessible, and draws out the empathy of people.

Of course “normal” is a very subjective term and is a loaded word. What does it even mean? The Oxford Dictionary definition of normal can be found below. Stigma however unintentional exists (which is exactly why we are talking so much about it). People have a narrow frame of reference for normal, and many awful statements have been heard. Of course with the development of the internet we are more able to broaden these frames of references, but with tight knit friendship groups and living within similar social circles, many of us never experience anything that may be considered “out of norm”. We are all individuals, so who gets to decide what the benchmark for “normal” is? Again, different socio-economic factors influence what each of us experience as “norms” throughout our lives so what one of us may think is “normal, another will think is “abnormal”.

Can we be/are we too sensitive about the words we use to describe people with dementia? There is that danger, and this can impact on how people understand the information. This draws into inclusion, if we wish to be inclusive then the language used is exceedingly important, it can shape our perception and understanding. And yes there are times when emotions get the better of us, but is this an excuse for using language that could/does offend?

Language and how it is used really impacts on our understanding, would we prefer our doctors gave us a hopeful but unlikely outcome? Or gave us all the facts? We surely want an outcome where we understand diagnosis, treatments. We need to be more realistic, rather than optimistic in order to ensure people understand the information being given to them, as one user put “take rose tinted glasses off”.

But of course there is a line, as there always is, that should not be crossed and I think this line is a personal thing. I do not get offended at things many others do, but take a slight at others. We need to understand who we are communicating with and the sort of communication and language they prefer. Language can also be used to reinforce certain norms, so the way you describe someone reflects on them. In the same way the way we use language can change norms.

It was also mentioned that the words and language people use can give great insight into their character and beliefs, although of course this can change. The more prejudice or stigma we can break down, the better for society, and the best way to do this is to use positive language. As language and stigma can be closely linked. How can we tackle this? Pretty much a unanimous answer here. Education. To educate about what dementia is, what it’s like to live with it, how to improve life with it. We need to raise awareness and challenge stigma. This has happened before, for example with the word “spastic”. Spastics Society became Scope as spastic fell out of use. Language can be a massive barrier for those with dementia, so again we need to look at the individual and their preferences.

Signing was also mentioned here, we must not neglect the extra needs of individuals in order to use language they can communicate with. We may need to also tailor information to an individual, slang terms, casual as opposed to formal language? Some people with dementia may not be able to communicate back, but we have to remember that this does not mean they cannot hear what we say. Word choice should always be at the front of our minds. They’re people, just like us, and words hurt, so we must treat them as people. As we would wish to be treated. Is there such a thing as dementia friendly language? This is a harder question to answer, as once again we are all individuals with our own preferences, dementia just strengthens the need for individualistic language/communication. I would say as a general rule though we should be aiming for simpler shorter sentences, not too much technical terminology, and lots of spaces for the individual to chip in, or ask questions. We also discussed the possibility of finding a new global word, “dementia” itself has many negative connotations – demented. And with so many languages using a word that came from a Latin word meaning “without mind” would it be better for the creation of a new perception with a new word?

In summary I think we can all agree that getting to know the person/people you are communicating with, the situation, emotions can all influence our language. But being able to interpret this so as to have a positive communication experience is invaluable.

Some handy links on the subject of the chat are here;

Beth Britton’s blog post on language and dementia: http://d4dementia.blogspot.co.uk/2013/03/trouble-with-language.html

Dementia and language via Youtube, looks at stages people living with Alzheimer’s go through. http://www.youtube.com/watch?v=gnmE-egP9d8

Guardian article: On mental health, it’s wise to use your words carefully http://www.theguardian.com/society/2011/sep/06/mental-health-choose-your-words-carefully

Interesting post by Time To Change, Director Sue Baker: The language we use to talk about mental health http://www.time-to-change.org.uk/blog/mental-health-language

Read the first sentence http://en.wikipedia.org/wiki/Dementia learn something new every day!

Oxford dictionary definition of normal: http://oxforddictionaries.com/definition/english/normal

12 Wishes for Dementia

Recently a Twitter friend asked us what our twelve wishes for dementia would be. I’ve thought long and hard about it and come up with mine. Please read to the tune of twelve days of christmas.

With regards to dementia, my first wish would be, prevention to this disease

With regards to dementia, my second wish would be, funding research and prevention to this disease

With regards to dementia, my third wish would be a cure for all, funding research and prevention to this disease

With regards to dementia, my fourth wish would be broadcast discussions. a cure for all, funding research and prevention to this disease

With regards to dementia, my fifth wish would be awareness, broadcast discussion, a cure for all, funding research and prevention to this disease

With regards to dementia, my sixth wish would be better treatment in shops, awareness, broadcast discussion, a cure for all, funding research and prevention to this disease

With regards to dementia, my seventh wish would be parliamentry turn out, better treatment in shops, awareness, broadcast discussion, a cure for all, funding research and prevention to this disease

With regards to dementia, my eight wish would be a dementia minister, parliamentry turn out, better treatment in shops, awareness, broadcast discussion, a cure for all, funding research and prevention to this disease

With regards to dementia, my ninth wish would be free drop in centres, a dementia minister, parliamentry turn out, better treatment in shops, awareness, broadcast discussion, a cure for all, funding research and prevention to this disease

With regards to dementia, my tenth wish would be all hours support line, free drop in centres, a dementia minister, parliamentry turn out, better treatment in shops, awareness, broadcast discussion, a cure for all, funding research and prevention to this disease

With regards to dementia my eleventh wish would be promoting peoples choices, all hours support line, free drop in centres, a dementia minister, parliamentry turn out, better treatment in shops, awareness, broadcast discussion, a cure for all, funding research and prevention to this disease

With regards to dementia my twelfth wish would be positive care news, promoting peoples choices, all hours support line, free drop in centres, a dementia minister, parliamentry turn out, better treatment in shops, awareness, broadcast discussion, a cure for all, funding research and prevention to this disease

 

Just to clarify some of those:

positive care news – positive coverage of the great job so many care homes, and care companies and unpaid carers are doing

promoting peoples choices – recognising that someone with dementia can still make choices, and helping them to do this in a safe way

all hours support line – a 24h telephone, text or email service for those of us who struggle and just need a pep talk or a different way of looking at things and wish to remain anonymous

free drop in centres – a dream of mine is to set up and run places where carers and individuals with dementia can come, relax, do activities and forget about the stress of day to day life for a few hours a week.

a dementia minister – someone to represent and discuss the issues surrounding dementia in a way the government can understand

parliamentry turn out – when there is a debate, for some of the MP’s to actually turn up rather than open swimming pools

better treatment in shops – for shops and businesses to understand and be able to react better in situations where dementia is involved (here’s looking at you red bank)

awareness – education from an earlier age about dementia and it’s effects

broadcast discussion – for TV programmes to have an informed discussion about dementia rather than just mentioning it needs talking about and then moving on to the next item (yes This Morning I mean you)

a cure for all – well duh!

funding research – if we are going to find a cure, or prevention we need money and time and dedicated scientists 

prevention to this disease – even if we don’t find a cure immediately, if we could find a way to prevent just a few cases, and prevent one or two families going through this I’d be happy for a while.

Intergenerational Approaches to Dementia

“I believe that children are the future, teach them well and let them lead the way”

In the most recent #diversealz Twitter chat we talked about intergenerational approaches to dementia, specifically involving young people. This led to a support group on Facebook opening up a new page specifically aimed at teens/young adults who have had experiences with dementia. It can be found here, if you know of anyone who may benefit from it please share it with them. http://www.facebook.com/groups/446915195418582/ …
There will also be a webinar hosted by Alzheimers Society of Toronto: When a Teenager Becomes a Caregiver is on Nov 6, details are here: http://bit.ly/15QEItU 

Our first discussion was our wishes/hopes encouraging intergenerational approach. Our answers covered many bases:
– To see the person NOT just the symptoms.
– To understand it is NOT a “normal” part of aging.
– For more visibility for young caregivers including mentoring from seasoned caregivers and more support
– To teach children early on about dementia so it becomes less stigmatized. Also gives children more knowledge so they can be prepared if they experience it.
– For people NOT to judge my caring ability based on my age, that an age difference  is not a reason something can’t work.
– For young people to be encouraged to visit people with dementia, can boost activities, and can aid with the loneliness.

This led on to how important is it to teach children and young people about dementias?
Reduce Stigma: Educating youth would help ensure that our societies are more dementia-friendly from the get-go! Education important as reduces stigma at young age.
Different Approach: – If made aware of dementia and its effects early enough children could very useful, as they approach things completely differently to adults, more lateral thinkers? Certainly can be more creative.                                                                                                                               – Children can relate to all sorts of people. They’re the wise beyond what meets the eye.
The Future: –If children are taught to be compassionate members of society they can be the care providers to tomorrow’s elders. Caring instincts should be nurtured at an early age, and as much information given to young people, as it is likely this could lead to more wanting to become carers, social workers, speech and language therapists, occupational therapists – the list goes on. Again it comes down to stigma, once that is removed and young people are taught the facts they can make an informed decision about how to/whether to help.                        – Think we can all agree that everyone has a role 2 play in educating people about dementia and that it’s truly intergenerational. They will inherit our future. It’s up 2 them to bear the torch of how seniors are treated & later themselves.
Communication: People w/dementia often regress to a more child-like state, communication and interaction with children could become easier than that with adults.
Reality: Because it is something that is happening in our society, so surely we should all be educated on it? Children are the best place to start, they can be more resilient than we give them credit for, and stereotypes that have started to form can be more easily broken down.

How can teachers help:
-Teachers can help by talking of the intrinsic worth of older adults in society. Respect shows as value grows. Preparation will only be there if the topic is on the agenda for discussion. Best way to broach subject subject is make it real, invite either a carer or a confident newly diagnosed person into class to speak a lived experience. The teacher can make this a real meaningful experience that will make a positive difference to lessen taboo and stigma.
-Think teachers have 2 much to do, would like to see more carers/professionals giving talks, assemblies etc.
-Sex ed is hard enough, mental health brushed over at school, dementia still misunderstood.
-Visits to people w/dementia would be a good start – to encourage interaction and understanding.

How early do we start?
-We agreed we should start at an age where they can comprehend it, as children (and some adults) have the tendency to make fun of things they don’t know.
-It’s important to teach children early on about dementia so we can reduce the stigma surrounding dementia. Childhood is where we learn habits. Build the habit early on!

How can it be done?
-Music would be a great way for the two generations to interact, as it changes dramatically from one era to another, as does dancing. And as previously discussed music can open many doors for someone living with dementia.
– Would like to see work towards a debate perhaps inter-schools competition about dementia, possible activities, fund raising, awareness raising, why there is such stigma. So many topics children/young people could talk about and bring new ideas to the table.
-Make it a class in schools? Include it in a part of the current curriculum? PSHE? Science?
– In the US they are starting to involve the boy and girl scouts, is this something that has been tried in the UK? Or anywhere else worldwide?
-Also check out a fellow bloggers thoughts on how to make visits to a loved one with dementia a bit easier for younger members of the family http://babyboomersandmore.com/2011/12/11/alzheimers-heartache-young-family-members-adjusting-to-a-grandparent-or-parent-with-dementia/

What are the downfalls?
– Children could find experiences of a loved one with dementia emotionally difficult (as I think we can all understand). One lady I spoke to said she could “take it” having her relative be nasty and argumentative with her, but not to her daughter, even after explaining what has happening. She didn’t want her daughter to have sad memories of the relative.
-If children were to visit people living with dementia (PLWD), are there risks? Some can become violent/abusive with little notice (I guess this sentence could be applied to children as well but I think it was meant about the PLWD. We would also have to be careful with number of children visiting, I think we can all agree a class of 30 children converging on any one would be stressful. Nan said she would be happy with 2 or 3 for a period of time in the afternoon.
– What about parents who may not want their children to have this information? It happens in every area, there will be people who want to keep their children sheltered from the harsher realities of life. And can we blame them? We are concerned that children are no longer living a “childhood” due to modern technology and other developments, some may worry that this is more an “adult problem”.
– As every case is so different could we really teach ‘basics”?

For a more in depth look try this post:
Is it appropriate/possible/helpful to talk to school children about dementia? http://wp.me/p2sRpM-4u 

What does dementia look like:
Many different answers for this one:
-I can only imagine the person to ask Is someone living with it. I hear it feels like a fog has decended and the person is treated as if they have disappeared. Not a good place to be and not helped by ignorance, time for raising awareness is now.
-Faces of dementia is our loved ones who are affected.
-Dementia shouldn’t have a face! It’s a nasty thing that takes our loved ones!
-have noticed peoples faces/body physically changing when in height of dementia “episode” – or do I change them in my head so i can distinguish? anyone else noticed physical changes? like full on different face!
-Dementia is faceless. it could be anyone. Your gran, your neighbor or your former teacher.
-Dementia has no face for me, its the fight going on around it that does. Purple angels, geletea etc.
-dementia sometimes looks scared, puzzled. angry. tearful. happy. Childlike.

So what can one offer people who want to know more but aren’t ready to speak – yet.
– Max Wallack, young author Why Did Grandma Put Her Underwear in the Refrigerator?
– At a Youth Caregiver Support Group, young caregivers can discuss w/people in similar situations. We definitely think a young adult support group would be beneficial because they have unique needs.
-Lyrics & poetry. Interpret, analyse. Memories song with powerful lyrics http://www.youtube.com/watch?v=q_m5N24XQgM  . Song writing as means to engaging people.

Why is all this so important?
-People refusing to get diagnosed due to uncertainty, stigma and worry they may be locked up, see more positive stories of aging etc .
-Visited a care home the other day and chatted with *happy* residents! They wanted to see more positive care home stories too! .
-Our community needs to be shown that people w/ dementia & seniors can still contribute to society

Bonus:

Anyone fancy writing a poem about dementia? We want positive, uplifting poems including these words beginning with “d”:

dignity, diversity, duty, doting, delight, devotion

We Are The Generation

We’ve got a situation, They’re always putting us down
We are the generation, Can’t keep us underground…

We’re on a one way mission, We can take it or die…

Running the world, It’s the time of our lives…

We better start believing, Before we run out of time

Fight til we fall, Standing tall…

Coz we’re the young, We’re alright

(Mcfly: We’re The Young, Motion in the Ocean)

Great diverse alz chat on Twitter today about young carers. Here’s a write up and some added thoughts from me for those of you who couldn’t make it (including the host who ended up in Twitter jail)

Our first question was how young is young? How can we define someone as a young carer? Aren’t we all just as young as we feel? Guaranteed some days I feel older than nan. Myself and another young carer, whose blog can be found here (http://charlotte-emily.net/2013/01/21/i-think-i-forgot-a-poem-about-alzheimers/ …) are both in our twenties (she started caring for her granddad when she was 20! Astounding, I was still out at uni, experimenting with life. And I don’t think I would have made a decision to care then). Which is apparently still outside of the norm for caring, particularly in the field of dementia.

I started off caring for nan by accident really, I needed a place to live, and nan needed some extra help after coming out of hospital with a broken wrist. And then I realised just how ill she was, and how terrifying the idea was of her being left alone. So I stayed, and a year later I can’t ever imagine leaving.

We both found (as I imagine older carers do too) that personal care is the biggest hurdle. I think it’s the role reversal that freaks me out so much. But you do just get used to it. It’s really not something to worry about (and is, as my AN told me, a great way to prepare for children. Most carers have had their children and so know personal care inside out. Younger carers have it the other way round, and I think, once you’ve dealt with adult personal care, babies are a breeze).

The hardest part of dementia was something I think we can all agree on, when the one you love and care for, doesn’t know you any more. Or even just the confusion of a situation where they look at you so lost, and there’s nothing you can say to help.

Another struggle younger carers are having to overcome is external attitudes. Some friends find it hard to accept that they/socialising is no longer a priority (why I am so truly grateful to all of you who stick around, because I feel I am not being the greatest friend I can. It is not that I do not care for you anymore because quite honestly I think of you all every day). Explaining to friends why you have taken on a ‘responsibilty’ can be quite challenging, especially for me as I find it hard to articulate my thoughts when talking. Which is where my blog came in handy. I think some of my friends began to understand the thought processes behind me and my role as nan’s carer much better when they read my blog. And it’s not only friends, professionals can be surprised to see a younger person accompanying a relative to the hospital etc and quite often have voiced their surprise. Should we be having to explain ourselves?

I struggle to cope when I think of plans I had made, and dreams that I had. That have now been forgotten about, put away or quite simply refused. Because nan, and the love I have for her, will always be my priority. But that doesn’t make it any easier to see friends living the life I thought I’d have, happy couples walking around, or the books I have for travelling. In fact, honestly, it makes me quite bitter. The hardest question I was asked tonight was if I regret it. Sometimes, I do. I really do. I wish I could drop everything and drink til I pass out. I wish I could go window shopping, spend all day in bed with a fella, or loiter in the park (or whatever it is young people are doing nowadays). But then nan smiles at me, or I’ll remember a good moment. And the regret and the bitterness fades away, and all I can think about is nan. Love comes first. And besides, even though I have/will have to turn down amazing opportunities, I have found even better ones in their place. Caring for nan has closed some windows, but opened many doors in return.

Relaxing as a young carer is hard. Well again I suppose any carer. But all my friends are going out, seeing new things, doing the things I used to enjoy and I just don’t feel I can leave nan long enough to truly enjoy myself. Whenever I leave the house I am checking my phone every 5 minutes in case there’s an emergency. I am thinking about nan and can’t truly relax. (Very much looking forward to my holiday at Disneyland Paris. Disney is the only place I have ever really been able to switch off, and I’m hoping it can work it’s magic again). It was re-iterated once again though how important it is to have a break.

Is it really more challenging to be a young carer than a “grown up” carer? We were split. I don’t think so, caring fullstop is challenging, and why should my struggles be any worse just because I’m younger? The counter argument is that we are still finding ourselves, and our place in the world. This is where I worry, my place in the world is quite firmly by nan’s side. What about when she leaves? Have I set myself up too young? Will it be harder for me to find a new place when I am older? As I won’t really know any different. I never set up a place anywhere else, I just wandered through life.

This chat made me grateful that nan is not yet at the aggression stage of dementia (not sure I can rock the black eye look). That she is (pretty much) sleeping through the night. That my boss is so understanding and that my friends support me too.

The best way to cope with caring? Especially as a young carer. Educate yourself. Know what it is you’re getting in to, how to get out, how to ask for a helping hand. Find an escapism. Bugger everyone who doesn’t get it. And love yourself as much as the person you care for. You need time too.

Also check out http://charlotte-emily.net/2013/09/02/being-a-young-carer/ a view from another “young” carer, who also happens to be a delightful person.

Websites to support young carers:

http://www.carers.org/community/young-adult/blog …

http://www.youtube.com/watch?v=fhqc3uTzwn8 …

http://edition.cnn.com/2010/HEALTH/11/10/Alzheimers.youngest.caretakers/index.html …

@lotsahelping runs website Lotsa Helping Hands

http://edition.cnn.com/2012/10/03/health/cnnheroes-child-caregivers …

@carerstweets runs a young Carers Online service for young carers