They don't tell you these things...

Discussion in 'I care for a person with dementia' started by drummergirl, Oct 11, 2014.

  1. lizf

    lizf Registered User

    Nov 11, 2013
    Dublin, Ireland
    Day time help not want you want…. yep indeed.
    I've had a carer arriving once weekly, will I wash your Mum's feet, give her a wash…Mum pretends to be asleep. If she's agreed to a wash the previous day, " would you not keep it for me to do?" Stays 10mins then leaves. Nice lady but it's what she's told to do.
    Been paying for a carer 4hours weekly, all I can afford. But Mum treats her like a guest. Holds needing to pay a penny until she leaves. Great woman but doesn't multi-task like me. Doesn't notice the care aspects sometimes as Mum is so enjoying singing and chatting. At least they are developing a relationship and she's stays awake. I'm lucky I found this particularly carer.
    We've just been asleep sometimes from 6am. Expected to be alert and available for all sorts during the day. Been like this for months. The letters or mails aren't read or understood. Now as I try to get help, never get a little nap during the day.
    I bore friends now, I try to talk about something else but my life is dementia, Mum and frustration. I bore myself sometimes:)
  2. scousemouse200

    scousemouse200 Registered User

    May 15, 2014

    I work as an activities coordinator in a Dementia Home, which to me has been very rewarding and the manager we have is fantastic. We have regular training and updates to the latest discoveries and various courses.

    One of the courses that I was put on was a Virtual Dementia Tour. This was something that portrayed what a person with dementia could feel and see.

    we were supposed to last 15 mins with this exercise and yet I only managed 7 before I broke down. This is something that I will never forget and helps me to help the people I care for, as I now understand the confusion and their heartache that they must be going through. This is a course that brought home to me the facts of what dementia does to people, but to others around, the relatives and friends as well.

    Please remember that inside they are still wanting to show you their love, even smiling and touching to show you care brings their world closer to ours.

    Please feel free to contact, as I know this can be a very frightening step for all. I cared for my mother-in-law for a while and know she has passed away. I know
    deep down she is in a happier place, and I hope that in some way I made her happy along the way as well.

    I know that when the residents smile, I have connected with them. No matter what level a smile makes a person shine.
  3. yorkshirerosie

    yorkshirerosie Registered User

    Jul 14, 2010
    I feel ashamed at my last post after reading yours. I always come to this forum for help, advice and positivity. I'm struggling atm with all the countless forms, ridiculous social workers who have no idea and the financial stuff which is completely stressing me out. On top of that, mum is progressively getting worse and things are happening which not one of the specialist cf nurses told me would or could .
    I feel for you and hope that you can gain some strength from the good advice and support that this forum offers.
  4. Welsh Colleen

    Welsh Colleen Registered User

    Mar 23, 2009

    Count me in. would be good to start a campaign.

    Happy to help. We need to get organised and while the Alz Soc does good work. It's down to us carers to get our voices heard
  5. Budgie

    Budgie Registered User

    Jun 25, 2010
    Nobody really cares or understands our role

    Thank you for raising the realities of being a full time carer for someone with Dementia. I support every word you say. I am so angry about the way the " experts", most of whom have nothing like the expertise we have had to acquire, concentrate on peripheral matters such as running cafes, courses in singing for the brain, yoga, computer skills, to mention just a few and never even recognise the many behaviour changes that are with us daily. These courses are so easy to organise and cost very little. What we need are short courses in coping with physical and oral aggression, toileting a reluctant person who does not understand the purpose of a toilet, getting someone ready for bed and up in the morning, safety tips when a person with dementia is in a car, feeding habits, hiding things, coping with a total lack of conversation and constant interruptions when trying to read , work at the computer or watch TV. The list is endless.

    On several occasions at public meetings I have expressed the view that they never talk about the many behaviour changes only about the bureaucratic things such as assessments, respite care, personal budgets - what I call the easy low costs things to do. This always gets spontaneous applause from those present but it is like water off a ducks back to the experts because they NEVER comment. They talk about financial support as if it is an automatic entitlement instead of being honest about the cap at £ 23,250

    My wife was diagnosed with Alzheimer's in 2008 and in 2012 I felt just like you and wrote and distributed at my own expense a short booklet " Alzheimer's - the lonely road" . I added an addendum in 2013. In it I set out a no holds barred version of our experience and the only person who comes out of it with any credit is our GP. Although unable to prescribe any medication that helps combat Alzheimer's he listens and understands our problems. The booklet has been well received but it is interesting to note that copies sent to the Chief Executive and a senior manager of a local county wide carers charity was not even acknowledged let alone commented on.

    A national dementia charity just took us off its mailing list when I was prevented, by good reasons, from attending their dementia café for several months. On complaining that they had not even bothered to phone to see if we were alright I was told we don't phone you in case you accuse us of harassment!! That sums it up nicely. the charities and NHS dementia people want to lead a cosy life and have no interest in us as individuals.

    I sent a copy to my MP who responded very sympathetically within days saying he had passed it to his colleague the Secretary of State for Health for comment. When this arrived it was not worth the paper it was written on as he failed to address any of the problems. My MP kindly passed it back to him with my comments but his second reply was no more helpful. All I got from the Shadow Secretary of State for Health was a standard acknowledgement.

    I have been lucky in that I have had the opportunity to take part in broadcasts on BBC News, the John Humphrey Today programme at peak time, several BBC World Services programmes and Pick of the Week. All have been well received by the general public so I have been old by the producers but they have had no effect on the " experts".

    I have now started to write another booklet for laymen stating how I have coped and am coping with the thirty odd behaviour changes in my wife since 2008. Again I will distribute it at my own expense to non commercial organisations for as long as I can afford to do so.

    If I was younger , I am 86, and more computer literate I would set up a petition to be passed to Downing Street, the heads of all dementia charities in the country and the media. Unless we go to these extremes we are never going to be heard!

  6. discreet

    discreet Registered User

    Mar 15, 2012
    empathy really feel for you

    OTE=drummergirl;1002278]My mother has h[/FONT] Dmentia for the past three years. I recently read an article in a newspaper giving advice about how to care for a loved one with dementia. The gist of it was that you have to ‘see past’ the disease, as the person you love is ‘still in there somewhere’.

    It said you have to be patient, keep calm, and try to inhabit the ‘dementia world’, wherever that is. It may as well have recommended buying a unicorn and riding it there.

    I’m not going to pretend I have answers, because I haven’t. I’ve stumbled through the last three years with absolutely no idea if I’m doing the right thing or not.

    What that article failed to offer, like most of the others I’ve read over the past three years, is useful, realistic advice about the hundreds of bizarre everyday challenges that dementia brings with it. They don’t tell you about the reality of what it’s like to live with this appalling disease.

    They don’t tell you how to deal with your previously kind, gentle mother swearing at you and hitting you in the head as you desperately coax her into the shower to try and get rid of the ever-present smell of urine.

    They don’t tell you what sort of nappies to buy when she becomes incontinent; let alone how you’re supposed to persuade her to wear one, or how to stop her taking it off and stashing it in a pillow case.

    They don’t tell you how to persuade her to take her medication when she’s screaming that she’s going to call the police because you’re clearly a member of the Gestapo who’s trying to poison her.

    They don’t tell you what to do when she thinks that the small boy you pass on your walk is her grandson and so wants to talk to him. Neither do they tell you how to placate the angry parents who think they’ve encountered the world’s frailest child snatcher.

    They don’t tell you about the helpful passer-by who insists on intervening because they’ve mistaken her having a meltdown in the street (and you desperately trying to get her home) for a geriatric kidnapping.

    They don’t tell you about the anger and resentment that arises when family members become invisible and stop visiting, leaving you to deal with the whole sorry nightmare because they’ve got responsibilities and you haven’t, and therefore you clearly have nothing better to do.

    They don’t tell you about the hours of paperwork, endless bureaucracy and pointless meetings with Social Services you have to trudge through when all you desperately want is some advice and support, but it takes six months for them to assess whether or not you’re entitled to even get on the waiting list for advice and support.

    They don’t tell you about the hours you’ll have to spend on the phone trying to claim disability benefits for her because the person on the other end insists that they have to speak to her personally in case, as her daughter, you’re trying to steal from her. They’re sorry but they really do have to check with her that this isn’t the case, regardless of the fact that she can’t remember her own name, let alone how to use a phone, because that’s how the system works.

    They don’t tell you about the GP’s visible annoyance when you bring her to get checked for a urinary infection for the fourth time in six months, even though they were the one who advised you to bring her for regular checks. Of course she’s displaying peculiar behaviour, she has dementia, and they have lots of other patients to see today. Cheers doc.

    They don’t tell you about the friends she’s had for years who gradually stop coming to visit because they ‘hate seeing her like that’. I’m pretty sure she hates being ‘like that’ too, but she could really do with a friend. They’ll all be at her funeral though, because that’s what friends are for, isn’t it?

    They don’t tell you how to deal with the crushing realisation that she’s never even going to be able to phone you again, let alone see you get married or be a grandmother to your kids.

    They don’t tell you how to channel the anger you feel when you realise that your fellow 30-somethings’ lives now revolve around marriage, mortgages and kids and yours revolves around a terminally ill, confused old lady who doesn’t even know who you are. They’ve chosen their responsibilities; you’d give anything not to have yours.

    They don’t tell you how to deal with discriminatory landlords who don’t want her living in their property because dementia has rendered her, in their eyes, a ‘threat to the community’ (but that’s a whole other story).

    They don’t tell you how to not laugh when she insists that you give ‘the kids’ a bath, because ‘the kids’ only exist in her head but you still run the bath and carry out an impressively elaborate child-bathing mime because it makes her happy, and she doesn’t have an awful lot to be happy about these days.

    They don’t tell you what to say when your 67 year old mother cries because she thinks she’s 12 and panics because she can’t find her (long dead) mother and she’s packed all her belongings and begs you to just take her home.

    They don’t tell you about any of these things.[/QUOTE]
  7. discreet

    discreet Registered User

    Mar 15, 2012

    Does a person with dementia spend hours cluttering up place saying they are fixing watches or doing crosswords and cluttering like mad sorry to contact you personally but somehow I felt you would help from the sound of your notes
  8. discreet

    discreet Registered User

    Mar 15, 2012

    Does a person with dementia spend hours cluttering up place saying they are fixing watches or doing crosswords and cluttering like mad sorry to contact you personally but somehow I felt you would help from the sound of your notes

  9. vb1279

    vb1279 Registered User

    Nov 3, 2014
    Thank you Drummergirl

    Thank you for putting into words the reality of what actually happens. I, like you, am in my 30's and live with my mother, who was diagnosed w/Alzheimer's 4yrs ago at 58yrs old. I feel like I'm watching my life pass me by. I try to keep my chin up, but it's so very hard at times.
    I hope you and your dear mum are ok, you are not alone.
  10. drummergirl

    drummergirl Registered User

    Jul 4, 2012
    #130 drummergirl, Nov 3, 2014
    Last edited by a moderator: Nov 3, 2014
    Just a quick one - if anyone wants share my post on FB or anywhere else then feel free. The more people who hear what it's really like the better as far as I'm concerned.

    The people I know who read it and have no experience of dementia have been horrified. Which I suppose is a good thing! People need to know that it's not just about sweet old ladies who can't remember where they put the cat food.

    There's been a pretty good response on Twitter so far.

    I don't want to be overly optimistic (not in my nature anymore!) but it does feel like something good could come of this.

    Thanks all - I really do appreciate all of your comments.

  11. halojones

    halojones Registered User

    May 7, 2014
    Well done for working with and caring so much for the folks with this illness, and the virtual dementia sounds really interesting..I think you will be interested in this artist, A Self Portrait by William Utermolen from 1961...He painted his portrait through his Alz illness and it is really powerful and very sad...A real eye opener to what is going on ...let me know what you think..? All the best x
  12. count2ten

    count2ten Registered User

    Dec 13, 2013
    I couldn't agree more with everything you said, Drummergirl, and my thoughts and best wishes are with you. I am experiencing a lot of what you talked about and particularly about the bureaucracy and people who write articles in magazines and newspapers (who are these people? What on earth do they know about the complexities and strains of caring for someone with dementia? What do they know about the feelings of utter helplessness and despair that can wash over you, the exhaustion at the relentless drudgery at times?.)

    But what has caused me more stress than anything my poor old demented mother has thrown at me is the so called "support services" . you know .. the ones who are supposed to "support" us carers with coping with this devastating illness. You are so right about the frustrating endless paperwork, phone calls, emails etc that makes everything so much worse than it should be and personally has left me feeling physically and emotionally drained. Everything takes for ages, such a lot of jargonistic nonsense and hoop-jumping , it's like wading through treacle and seems designed to cause the most suffering and stress possible.

    My blood pressure goes through the roof every time I come into contact with hospital staff, appointment clerks (how many times do I have to tell them not to write to her but send appointments etc to me - she won't know what it's about, it will make her very anxious, she will either lose the letter or throw it away, or will phone me late at night and want to read the entire contents to me). Also causing more problems than they should is the GPs, CPNs, district nurses, and of course the psychiatrists who don't see to have a clue and just view my mother as yet another medical experiment. Not forgetting of course social services whose staff have clearly been trained to ignore all phone calls and emails.

    But the main stars of the show, the ones that push my blood pressure and patience to the absolute limit and often beyond is the incompetent, uncaring and overpaid owners of the care agencies, who are contracted and paid handsomely by the L.A. to provide a service which is generally just tokenistic and who shouldn't be trusted to look after a mad dog on a rainy night.

    And of course we get the fall out from all the above and have to mop up the mess they all leave behind, while all the time trying to run our own lives, homes, families, jobs etc and also dealing with the guilt about not doing enough (even though we know we can't realistically do any more than we already are). No-one visits because they can't cope with the confused questions, rudeness ,anxieties (even though this is all due to the illness). All I get now is ,"have you thought it's time she went into a home?". And my answer is "Do you think she would be happier and safer in a home? Do you think she won't fall just because she's in a home? Do you think people won't still make mistakes with her medication? Do you know what the staffing levels are in care homes? (what happens to all the other 20 residents while the 2.5 care staff are dealing with someone who has soiled themselves and spread it all over their bed, walls and floor and now needs hoisting,showering, reassuring and putting back to bed?). How would you like to have your false teeth and all your clothes given to someone else who lives in the home? Would you like to be shouted at and (it still happens) slapped, pushed, shoved, just because you want the toilet in the middle of the night, you need reassuring after a bad dream, or you won;t get into the bath or change your clothes or eat your food quickly enough; would you like to live in a house that stinks of stale urine, faeces and vomit? And on top of that, have to listen to endless wartime music". (Apologies to all the good, hardworking care staff out there - but unfortunately you appear to be in the minority). And yes, I have thought about bringing her to live with me, but she still has enough capacity to say she wants to live in her own house and "do her own thing". And I want to support her to do what she wants for as long as she can. Is that asking too much??
  13. Armygirl

    Armygirl Registered User

    Feb 1, 2014
    Thank you drummergirl

    I just wanted to say a big thank you to drummergirl for your thread "they don't tell you these things".....I read it and cried my eyes out. You have said it all so well. No one knows what it's like unless they have experienced this nightmre for themselves. I think you touched so many with your words..all the things we feel and deal with day in and day out. As for the anger and resentment that arises with family and friends .... I never knew I had it in me to get so angry!!!

    Get it out there drummergirl - you have all of us here to back you and support you.

    I wish you well.
  14. tim needs help

    tim needs help Registered User

    Nov 3, 2014
    oh bless you for your post - it has helped me feel a lot better.

    Thanks so much you have made me feel ok about lots of things - because I feel as you do and I know how hard the struggle to cope is. As yet I can't find any advice about the pulling off the nappies and how to make her take medicine. And my Mum goes up tp people in the street and asks them to help her escape!
    Thanks so much for your post.

  15. lizf

    lizf Registered User

    Nov 11, 2013
    Dublin, Ireland
    xxx just loves really xxxx
    Tried to tell someone, a manager of care services, today…" don't judge, this could be you or a loved one in the next few years, a carer or being cared for" Stop accepting the status quo, telling me its' just the system. None of it is good enough.
    Really don't think he heard.
  16. Worriedsick

    Worriedsick Registered User

    Mar 4, 2013
    Although my wife is in the early stages of dementia I too wonder where the help to understand her condition and help her will come from.
    So many of your experiences have happened to me and I feel the world doesn't care.
    I hope you and others like us WILL get helpful advice.
  17. Lulu

    Lulu Registered User

    Nov 28, 2004
    impressive thread

    Drummergirl, very well done with this thread. It is all so, so true - unfortunately. You have put into words what our struggle has been like these past 10 years, and still ongoing. I hope something is done with this thread.
  18. count2ten

    count2ten Registered User

    Dec 13, 2013
    If he acknowledged what you had said then he would have to do something about it, and write a report or something! I am taking control! I now have the wonderful promised direct payment at last - I have waited and jumped through many hoops and waded through a tree of paperwork to get this, and I am spending it all on what will make my mother's life as happy and safe as possible. (no doubt I will be slapped over the wrist come next review, but do I care??). I have taken her today to a wonderful club for PEOPLE, and they are wonderful, wasn't treated like a child and was spoken to with respect and dignity, she had a good laugh and a great time and wants to go back - hopefully this will give her something to look forward to in the dark winter months, have some nice grub, have a laugh with some lovely people and give me a bit of emotional respite at the same time. I am also getting rid of the incompetent and dangerous care agency that we have had to endure for the past year and employing a private agency . I will use whatever money I have or she has to pay the top up fees to make sure she has a quality service from people who are well trained, well motivated and competent to cook her a proper meal, have a conversation with her, make sure her home is comfortable for her to live in and everything else we should expect but don't generally get. The care agency business should be far better regulated, their staff should be properly screened, trained and required to be registered and accountable. They are caring for human beings for goodness sake!
  19. Trace2012

    Trace2012 Registered User

    Jun 24, 2013
    Wow im speechless! All of this is so true! Hearbreaking and so true, I am dreading all of this as my mam has Lewy bodies also!

    Sent from my iPhone using Talking Point
  20. ali p

    ali p Registered User

    Aug 5, 2014
    So well put you poor thing love and hugs x

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