A letter to those in Power…….

To those who can make change happen……

So here we are again, my fourth experience of World Alzheimer’s Month since I received my diagnosis 4 years ago.

I must confess that ‘dementia’ hadn’t entered my vocabulary before the diagnosis. I knew little about it and I had no experience of it in my family. Now it is all consuming and with me twenty four hours a day.

When I was diagnosed I consumed everything before me, written by others living with the condition. I noted their resilience, their campaigns, their desire for change. So why, four years down the line, am I too writing about the same need for change, writing about the same subjects, writing about the same as was written about long before my diagnosis?

If I’d been diagnosed with cancer, the phone would have been ringing – a pathway would have been agreed and services would have kicked in. So why when diagnosed with dementia does the phone remain silent. Why when the consultant gives the diagnosis do they discharge you as there’s no more they can do?

Wouldn’t it be wonderful if social care was a job of choice, with recognition, status, and a value placed on the skills of the staff?
Wouldn’t it be nice if individuals were treated as simply that, individuals with individual needs?
Wouldn’t it be nice if policy makers actually listened to the people that mattered and had most knowledge?

“Nice’ is a strange word in these circumstances. Surely it should be a necessity.

Just because we have dementia doesn’t mean we don’t have Rights…

For so long people with dementia have been shoe horned into the general services which others believe is our need instead of individually assessing need. Now we’re beginning to rise in numbers and TALK in public, there’s a realisation of the individuality of ‘need’ – we don’t all ‘fit’ into current services provided.

It’s almost as if it’s too late for all those of us currently living with dementia, both in the early mid and late stages and all stages in between. It feels like we’re the guinea pigs being used to try to sort out this mess so future generations can benefit.

If everyone currently living with dementia, in whatever stage, has to be guinea pigs for change to happen, then so be it, but change there has to be. No more silence, no more voices of the few, no more talk and good intentions – there has to be actions.

In the next 5 years huge social care change must take place so that in 10 years time, we’re proud of what the country has in place. People living with cancer aren’t shoe horned into inappropriate treatment, those recovering from a stroke aren’t shoe horned into inappropriate treatment….so why are people with dementia? Dementia lags behind in medical innovation so the need for social transformation is greater.

We don’t have innovative medical procedures to follow or a plethora of choice on medication because research has been sadly underfunded so the need for social transformation is greater. In my mind this should naturally lead clinicians to use social prescribing instead of automatically looking at the medical model and then discharging us.

We need to be realistic though and also examine various ways to fund this enormous need – what should and shouldn’t be funded – as we all know there is no infinite money in the pot.

Yes it is a daunting job to transform social care, but then surely it was a daunting job to create the NHS in the first place, but it happened.

When I was diagnosed, I was fortunate, I was resilient …I knew how the system worked. Many others would have sat at home waiting to die, not knowing which way to turn or where to look for support.

There are tiny pockets of good support, tiny pockets of good care in hospitals, tiny pockets of good care in care homes. But why tiny?
More than anything we need consistency. The post code lottery that currently exists is shameful.

Let’s not rely on the medical model of care any more and instead focus on the social model that will impact far more on resources in the long run. For far too long services wait for the crisis to occur, wait until families can take no more before intervening. If people are supported with emotional, financial and practical advice from the point of diagnosis, they would be more educated on what they can do for themselves. They wouldn’t head to their Gp with depression – not only the person with dementia, but families who can’t cope.
If care homes were more educated on how to detect conditions in people with dementia that they could then avoid, there wouldn’t be a need for unnecessary hospital admissions.

We are at a crisis in the NHS and Social Care services. If you don’t listen now and Act now, the situation will simply get worse as the ageing population creeps ever higher putting even more pressure on services.

But there is light because there are ways to avoid this crisis – yes, a mammoth task ahead, but what’s the alternative to not dealing with it. Not dealing with it won’t make the crisis go away.

I don’t want my children to be faced with the chaos of care when I can no longer care for myself and I’m sure you wouldn’t want your children to face that challenge either.

Regards from someone who doesn’t have time on their side……

About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

21 thoughts on “A letter to those in Power…….

  1. Exactly Wendy. Not being cast aside after diagnosis should be a minimum expectation of anyone with a terminal illness, an offer of support for the person and their family to enable them to manage independently for as long as possible should be standard. In my opinion an acceptance that this is a medical condition that will most certainly need an increasing amount of monitoring, support and alleviation (as much as is possible) of it’s devastating symptoms.
    When 24/7 care is essential it should not be totally funded from personal savings. I’m afraid we are watching a time-bomb that is being ignored with a government that is too frightened financially to accept responsibility for the care of those surviving with dementia. In the last three years as a family we have coped with my husband’s mother with.lung cancer and an ensuing brain tumour and my husband’s father one year later with heart failure.There is absolutely no comparison with the treatment, care and support for these two terminal illnesses and my mum with Alzheimer’s. I can remember though supporting my uncle who was diagnosed with dementia but living with his wife. After she died suddenly we were much more hands on with his care and during a review of his condition (hasn’t happened for my mum) we were told he would be discharged as “they” believed he didn’t have dementia. He died three months later in hospital and the cause of death given as dementia. Wendy, you are working so hard to change things but four years on you must feel like you are walking through treacle.

    Liked by 1 person

  2. Wendy I agree you 100 percent, people are scared of the word Dementia, they panic, families are torn apart.
    Families and friend see it as funny at first when the memory ‘goes’. In reality forgetting someone’s name or what they had for dinner is the very least of the difficulties Dementia brings.
    Dementia to me is the loss of understanding.
    To understand why:
    You have to get dressed.
    You have to keep your clothes on
    You have to eat
    You have to go to the toilet
    You have to be wiped clean afterward.
    You have to have a shower
    You have to clean your teeth.

    Doing these things for my mum were the hard things about Dementia. It became a fight with every task with mum swearing at me and hitting me each time I performed the above for her.

    Having your hair cut.
    Cutting your toe and finger nails.
    Explaining the need and doing these tasks for her became dangerous as she lashed out and screamed.

    When your mum gets out of bed every half hour 24 hours a day and sets the sensor alarm off, your care ‘patience’ withers away.

    Families trying to understand this are in a difficult position.
    I hit my mum once in retaliation to her hitting me,
    This was the day I decided that Mum and me were both prisoners in our home, and we started the daunting prospect of full time care home.

    Nobody prepared my wife and I for these events, for which I call the real problems of Dementia.

    None of the hundreds of pamflets and flyers described this. No doctor warned me of this.

    There is theory and practice to be taught but real life living with dementia experience is the best training (warning) that there could be.

    Plus all the paperwork involved is daunting, the guilt you feel leaving your parent in the dementia awareness care and nursing home, to have them call that Mum has hit someone or her glasses are missing because other patients walk around taking things out of rooms, so many issues that are lacking on carers that work 12 hour shifts that are tired and patients all kicking off at sundowners and again at night.
    Reality that some carers it’s just a job and care homes can’t keep staff.
    Kindness goes a long way and so does understanding.

    Wendy you should send your article today to all the newspapers, Health Minister, Prime Minister, the time is now to act for you and all that is being misunderstood living with Alzheimer’s.

    We are here for you,
    Lots of hugs and kisses to you Wendy, go girl…..xxxxx

    Liked by 1 person

  3. We feel your frustration even to the point that at our ‘Active8’ meeting today where 16 of us with various types & stages of dementia & our partners meet up we have to share info between us of what (if any) support there is as nothing is clearly signposted. It appears that dementia is overlooked by all services & the younger you are the less there is available to you. That’s why we have to keep making ourselves heard!

    Liked by 1 person

  4. Thank you for writing this Wendy. It’s spot on.
    My brother was diagnosed with Stage 4 bowel cancer last year, with secondaries in the liver and lymph nodes. He was immediately given the most impressive treatment and surgery, and supported all the way by some fantastic specialist nurses. He is now in remission and living well. In contrast my husband was finally, after several years, diagnosed with Alzheimer’s last year and apart from being prescribed Donepezil there has been no follow up or support. He is 65. His sister has just been diagnosed with PCA at the age of 62. She has had to sell her flat to move into care, as apart from myself she has no one to care for her. When the money runs out in 3 years time she will be dependent on the state. Very few care homes are geared up to taking people of this age unless they are physically disabled. I attended my first carers meeting last week and was shocked, but not surprised, at the number of carers taking anti depressants.
    We need to do all we can to make clear the urgent need for action.
    Thank you for raising the profile with all you do.

    Liked by 2 people

  5. I so agree with all you say. My husband was diagnosed twelve months ago but I knew he was changing long before that. There were no NHS aervices or help/guidance in our area UNTIL i came across MHA Live Well At Home, a wonderful group doing wonderful work and aiding our pathway. However if you dont get out and find things yourself, there is nothing. We were told we lived in the wrong area! We pay for a Dementa Friend, we search out activities and attend as many events as we can. Certainly keeping busy, as you do Wendy, keeps things in perspective but we shpuld all be pushing for further provision. And weve a long way to go………. sending all sufferers our love. Keep battling its so worth it!!

    Liked by 1 person

  6. Dearest Wendy, you have ‘hit the nail on the head’ ! As a carer I have seen first hand the devastation left with those living with dementia and their families by receiving a diagnosis and having no follow-up or back up. The lady I am with has often said she feels as if she has been thrown away by society and the doctors. There does not seem to be any structured counseling and assistance in what to expect with the changes which will occur or how to live with those changes. I’ve noticed how difficult it is to find a safe environment for my lady to have conversations about how she is feeling with others living with dementia. It still seems to be such a taboo subject, even though there are teams out their trying everything to make others aware. So few people seem to just sit down and listen to someone living with dementia – listen to what they need – they are still with us! Still have voices and still have abilities. Sadly, many who do not understand the diagnosis, inadvertently rob the individual of what they are able to do, instead of working with it and achieving happier, healthier living experiences. Your book and your blog have become one of my daily aids to helping me do the best I can.Thank you With all of my heart for your shared wisdom!

    Liked by 2 people

  7. Thank you for your blog and words of wisdom. Sadly still so true. My mum is diagnosed with vascular dementia and sadly in a care home but your inspiration book and blog will have educated me. Now my task is to educate them. You have achieved changes 💕

    Liked by 1 person

  8. Dear Wendy,

    This is a very powerful post. I love learning from you. I’m so grateful to you for sharing your insight, experiences and great encouragement and advice. My mum is currently in hospital. She is 70 and was diagnosed with Alzheimer’s Disease last year. She was diagnosed with swallowing difficulties in June 2018. Reading Beth Britton’s account of her dad’s experiences with swallowing difficulties sadly echoes my mum’s experiences. SALTs were not able to spend much time with us due to work pressures. So many people like you and Beth work so hard to create awareness and bring about change. It’s sad that the nursing home wasn’t able to meet my mum’s needs years after Ray Britton’s experience. We must never stop speaking out. I try to be as informed as possible so that I can support my mum and find great support for her and the family. I was reading about the RITA unit in hospitals and thought this would be good stimulation for mum and myself during visits. I was told the unit wasn’t working then I was told it had been sent to another ward due to lack of use. Due to the ward being understaffed I did not want to ask staff to get the unit so I have continued to use my iPad & we listen to a playlist & watch YouTube videos. I also take in flower books and other stimulalating objects. I felt so excited when I read about RITA. Unfortunately, the reality has been different. Hopefully, the Dignity In Care Team will be able to get RITA tomorrow. They have been supportive and helpful but are also under pressure. Here’s to speaking out & continuing to try to bring about change. I hope you’re having a great day. Kim

    Liked by 1 person

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