Why are we deemed so worthy of so little….?

Recently I’ve met many people and heard many sad familiar stories. I’ve had emails from people saying they don’t know where to turn to or where to look, even in areas where I know there is support available. People wanting to help themselves but needing support and advice to do just that.

I’ve often said, ‘we don’t know what we don’t know’. It’s so hard to know where to start if you don’t know what’s available and the best people to ask. Many people find it difficult to search on-line and I help where I can but why should it be like this for people diagnosed with a life limiting condition?

I met a speech therapist in Scotland who spoke of the pilot scheme she’s involved in. For people with dementia who have trouble finding words…….brilliant⭐️

When a person has had a stroke and they have trouble word finding they are automatically referred to a speech therapist……why isn’t someone with dementia also automatically referred when they have trouble with word finding?

When someone has had a stroke and has a gait problem they are automatically referred to a physiotherapist……why isn’t someone with dementia also automatically referred when their gait changes…….?

Many people with many conditions who have a problem eating are automatically referred to a dietician……so why, when our taste buds change or we don’t feel hunger are people with dementia not automatically referred to a dietician…….?

Why isn’t our hearing automatically checked at regular intervals for such things as hyperacusis – why did people with dementia like Agnes Houston have to highlight this issue to professionals for the rest of us to benefit?

If I was diagnosed with cancer tomorrow would the phone stay quiet and no treatment be offered? So why when someone is diagnosed with dementia does the phone remain silent……..? Why is it up to us to find the service?

If you’re diagnosed with diabetes, you have regularly check ups. So why are we often discharged from a memory clinic into the hands of our Gp and then simply told ‘Oh it’s just the dementia’ when raising issues.

If someone is diagnosed with cancer people rally round and tell you to fight it. So why when we say we have dementia are we given a sad embarrassing look with no words of encouragement?

Why do we have to try to venture into the maze of bureaucracy to find, MAYBE, what we need? Why is it assumed that charities will plug the gaps?

We don’t know what we don’t know yet many services expect us to find them. Many benefits expects us to know they exist and how to apply for them. When we receive a diagnosis can’t that sort of information be available and not just with a pile of leaflets?

 

As children we want our lives to fast forward and the thought of being ‘older’ is exciting, bringing us independence and being able to do what we want. We protect our children, we worry for them and most services are there to make sure they develop as they should (I’ll miss out mental health at this point)…….but with dementia our lives can ‘fastbackwards’, we regress to former times. But unlike children growing up, we have no choice or control over the regression. Some carers describe it as being like ‘looking after a child’……so why does the health service not work in reverse and provide appropriate support and help for those supporting and people with dementia as a matter of routine?

Yes I know all this costs money and the funding isn’t there but why is it that people with dementia are ignored and not deemed worthy enough of help? Why do I feel like we’re at the bottom of the pecking order simply because we have dementia ?

Ramble over………

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.

52 thoughts on “Why are we deemed so worthy of so little….?

  1. Wow so well put Wendy, it makes me feel so sad . What you say about cancer is correct thank goodness, so for me on a personal level have had breast cancer and was treated so well. Sad that someone with dementia is thought so little of. I feel angry for you and others who need more support. I have some impairment and struggle with understanding things. So I know exactly where you are coming from. I also worked in a dementia crisis service and saw it with my own eyes very sadly. As soon as a person has a diagnosis of dementia, they are treated differently which is so sad, and I don’t know how you get over the stigma of this. I enjoy following you Wendy as I can relate to so mych of what you say!!

    Liked by 1 person

  2. I’m a student physical therapist in the United States, and I’ve been following your blog for a few weeks now since I finished reading your book. This post is exactly what I’ve been pondering lately. We’re taking a class right now on treating people with chronic and progressive diseases like Parkinson’s disease and spinal cord injury, and we’ve just finished a module on dementia and how we can best help. Thank you for raising awareness and speaking out about your experience. Your insight is so valuable – I’ve learned a lot from you!

    Liked by 2 people

  3. I was making these points, not so eloquently, at a meeting on Friday. I think us youngsters are even more discriminated against, my local council just could not get its head around me and my wishes.

    Liked by 2 people

  4. Perfectly stated Wendy. I liken it to giving birth years ago when the medical staff knew it would end and then you would be fine so there’s no real need to take action. After the event the pain will have gone, no matter how much suffering of pain you have experienced. The dementia situation sadly appears to follow the same mindset. We can’t do anything about it so we will wait for it all to end. So cruel and above all unsupported. I am appalled by my experiences with my mum although I have to add 3 years ago we were also trying to deal with my mother in law with a brain tumour following lung cancer. It was only when we were at screaming pitch trying to cope with her behaviour that the hospice offered her a place “as a favour” for two weeks to try and help with symptom control. Thankfully her body succumbed to the effects of uncontrolled diabetes. It was a long few months of struggle but at least not years and years.

    Liked by 1 person

  5. It’s tragic and immoral to hear of the dreadful difficulties facing those with neurological conditions in the UK. To help English-speaking people living with dementia in France, I’ve created DOODAH – Connecting with Dementia. We offer advice, help, tips, links etc. Last week’s post was about the help available here – it’s very wide-ranging. We’re lucky but, for those who don’t speak French, to benefit fully can be difficult. Here’s the site address: (https://doodah.online/acromania/) for anyone who’s interested, but I don’t want to show up the British system too much, so some might not want to know.

    Liked by 1 person

  6. My friend is a case manager at a hospital clinic for HIV patients, and helps find them resources for various issues that arise as they learn to live with their illness.
    Medical appointments, financial crises, housing referrals, furniture needs, programs to help pay for meds, the whole range of help, counseling and referrals are covered. Why not a case manager when one is diagnosed with dementia! Having dealt with my mother’s Alzheimer’s diagnosis, I say you are right on, Wendy!

    Liked by 2 people

  7. You were wise to leave mental health out of your highly coherent rant, because (particularly depression) brings about the same looking at their shoes response as though we are now officially on the scrap heap within the “too difficult to deal with” box.

    Things only change when we get off our collective saggy arses and make enough fuss to get access to what I would regard as the essential services you list in your post.

    Do nothing and the status quo will remain or get even worse. So once again it’s a big thank you for making a difference. You are truly remarkable and a bright shining light on our oft dimly lit journey in case I haven’t already said that. If I have made that point already, please forgive me for the repetition.

    Loving these posts. They remind me to also do more while I still can. From shouting boo at public meetings, writing letters and demanding that our fundamental human rights are not eroded because we have a condition that might make others feel a little awkward.

    Liked by 1 person

  8. Since my mum was diagnosed with dementia just over a year ago I (daughter) have felt alone and frustrated in finding support for my mum. We also have to cope with my father who has Parkinson’s disease with carer’s 4x a day. You are right Wendy that once you are given the diagnosis it seems as though you are left to cope and there is no follow up.
    It is difficult to see my mum struggle with everyday life, she often cries. I have tried many times to find support groups for mum but help seems lacking in our area of Nottinghamshire….. It is the hardest and saddest thing I have ever had to cope with.

    Liked by 1 person

  9. So true Wendy. My father is 10 years now living with Dementia , the homes are costing a fortune but because it’s mental health we get no help… I am constantly in hospital with him , the last visit was this week due to a fall at 9pm . The hospitals are atrocious and I’m sure, due to experience , a dementia patient is put last .This visit, (to Steppimg Hill , Stockport ) 6 hours in a cold corridor , dad just needed a stitch to his head . After 4 hours he was agitated and becoming very vocal. We were the floor show for the A and E and not one member of staff asked if we were ok during this time . I was so upset and stressed and felt so alone … I kept asking staff what was happening and telling them he needed to be back at the home. Who cares? What happens if you have no family nearby to get up I’m the middle of the night to be with them ?

    Liked by 1 person

  10. Spot on Wendy! Said with such passion and feeling. Both my husband and his sister have young onset Alzheimer’s and have had no interventions or help at all. As a teacher I am amazed. If a child has a ‘special need’ it is our duty to ensure that the child is given appropriate support. As you say relying on help from charities is completely unacceptable. The contrast in care in comparison with cancer patients is extraordinary. It is scandalous.

    Liked by 1 person

  11. It feels like an uphill battle trying to educate primary health care about the needs of people with dementia and the benefits of allied health support and rehabilitation. I thought things were better for you in the UK than for us, here in Oz, but maybe it is the same battle for us all!!!!!

    Liked by 1 person

  12. Adding to my earlier post re attitude in hospital to dementia. My father has within the last 9 months been assaulted twice by a resident in his home and also been a victim of abuse by staff. He is nearly 90 and doesn’t deserve his life to be ending this way. The social worker told me Dad wouldn’t remember the incidents …..I was speechless. The council, mental health services etc are dragging their heels over moving the resident causing problems in the care home . People with Dementia deserve to be treated with dignity and more understanding. Somewhere inside there is still the person who sometimes peeps out.

    Liked by 1 person

  13. I think I have mentioned before that in Eye Care many clinics now provide Eye Clinic Liaison Officers (ECLO) to begin to help fill those gaps, and then referral to social care with or without registration once a person is Certified by an ophthalmologist as being visually impaired or being in a situation where support would be useful. this should lead to service offers. Those two systems can work well in concert or independently to provides signposting and supports to individual with visual impairment and their immediate (family supporters) Many folk may not want to be labelled as blind, thought at that point with poor vision from still being under the influence of eye drops its hard to think at all!

    I’ll continue in another post, so you can take your time. X (m)E

    Liked by 1 person

  14. IN eye care often lots of lateral thinking is as useful as special kit, so here is one thought for not loosing your place when cooking.

    Using a printed recipe, First of all get it laid out in large bold print about size 14 and use blutak or similar and put it on the fridge or cupboard above where you are working. Doesn’t take up room on the work top the way. Its at eye level, and as you cross out what you just did you keep your place more easily. Yes you need a new on every time, but thats a small price to pay for enjoyment.

    Or have it on your tablet placed in a drawer so you can open it to view and close to save getting it covered in flour.

    You find usually the ingredients are listed in order of use. Get each thing out, weigh or measure and set out in order of use from lets say left to right.

    Do the same with the kit you need.

    As you complete each step of this “getting ready” chefs call it “mis en place” , mark the paper recipe with a tick say to the Left of the list.

    IS the oven on at the right setting? Oven gloves at the ready? Apron on? Is the pot/bun tray prepped?

    So now start the making and for each step, cross it off the recipe listing, and bung the dirty kit in the sink.

    If the phone rings or the door bell, if you have done this step by step you should be able to check your last action and carry on.

    The recipe won’t say once the item is in the oven – make more tea, have a sit down, and enjoy the wait, but this is implicit I think? If there is more waiting time, begin washing up and putting away, waiting for the ping of the timer or your phone alarm to check progress.

    Had I numbered this list of instructions it might have been even easier, to keep track, and complete.

    So for someone with little sight and maybe using braille, having a procedure makes it easier to follow though and to be consistent. I reckon this would work for dementia and especially Wendy for you with rock cakes, fairy cakes or the full on baking experience you miss. You may want to write on your recipe Switch oven off!

    If its not useful; its probably my fault not yours! And thanks to the male student who came up with this, not my training!

    x (m)E

    Liked by 1 person

  15. I am following your blog every day Thank you so much for doing this My husband was diagnosed with Alzheimer’s six years ago What you said in this blog is exactly what I have been screaming for six years We live in Ontario Canada near London He was diagnosed and then given another assessment a year later After that assessment he was given another assessment appointment a year later He receive nothing in between Just like your blog says we are going through the exact same thing I have been online sending emails to politicians I just don’t know what is going to cause these people to recognize Alzheimer’s as a disease the same as cancer or diabetes It is so frustrating Your blog is such a comfort to me It allows me an idea of what my husband is going through because he did not express himself the way you do Thank you so much and keep up the good work

    Like

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