They don't tell you these things...

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

  1. Genesis

    Genesis Registered User

    Jul 27, 2012
    Caton, nearLancaster
    I applaud you. This is the first time EVER that I have encountered such raw honesty and I support your comments every step of the way and I will support you in anything you do to make your comments public. Without my Christian faith I would have been locked away by now. You have my every empathy and God bless you for your honesty.

    Genesis xxxxx
  2. rustyrat

    rustyrat Registered User

    Sep 25, 2012
    We are a carers because we love those for whom we care, in my case it is my wife, who is and always will be the love of my life, I am nothing but an empty shell without her. However hard and difficult it may be I could not even contemplate passing the responsibility of her care to someone else.

    It is not actually the hard work and difficulties of caring that trouble me it is the sadness of seeing the one I love slowly disappear before my eyes, but I still love her. No one really understands dementia and certainly no one can possibly prepare you for what is to come. It is like everything in life you have to learn from experience. Those who have experience and have learnt may not be able to teach those of us who are still learning and those who do not have the experience are in no position to advise or provide real help as they cannot possibly understand. Please don't let anger and frustration with others cloud your life it makes caring so much more difficult.

    My understanding is that all cases are different and honest discussions with the professionals, (Doctor, Consultant, Social Services, Societies etc), lead me to believe that none are able give answers to the many questions that we as carers may pose.
  3. clareglen

    clareglen Registered User

    Jul 9, 2013
    Me too. I have felt rage at my mum at one point but I didn't even say anything & I believe God kept my temper locked. She's in a home now & I believe he orchestrated that as I was at the end of my tether.
  4. Max_UK

    Max_UK Registered User

    Mar 19, 2010
    South East
    drummergirl, thank you for your eloquent & brilliant thread.

    I think that in all fairness that some of the media & political view of dementia is influenced by the high profile cases that have been mentioned.
    Margaret Thatcher is certainly one, but for me, the most "high profile" has been Sir Terry Pratchett.
    He has made many aware of dementia - early onset Alzheimer’s in his case, which he calls the "em******ance" (Aren't auto censors wonderful?)

    He has written his own articles in the press, been written about & also made television programs explaining the effect & slow march of his particular illness.
    This tends to give people the impression that sufferers accept their illness, behave with dignity & can function reasonably normally for years apart from a benign memory loss.

    Ah, if only that were the case. For the vast majority of sufferers, it isn't.
    The loved ones we care for, are mostly in denial, argumentative, sometimes violent, increasingly incontinent & accusatory.... the list could go on.
    It is truly an appalling monstrosity of an illness.

    But nevertheless, thank you Sir Terry for making more people aware of Alzheimer’s.
    Thank you again drummergirl for telling it like it is.
    (My wife hasn't yet got to the serious incontinence stage - don’t know how I’ll cope when it happens)

    Regards to all,

  5. mcflod

    mcflod Registered User

    Oct 17, 2012
    Hi drummer girl

    Your post said everything the world needs to know. Everyone that isn't dealing with this disease thinks it all about repeating yourself and being forgetful, how wrong! Can anyone tell me is there anyway of me being able to get this post onto Facebook also so I can share? I don't "tweet" as can't work it out lol

    Drummer girl if your happy with me posting it I'm happy to do so in hope to raise more awareness even with just normal people and friends?

    Thinking of the day ahead already
  6. willow4Sam

    willow4Sam Registered User

    Oct 12, 2010
    Reading, Berks
    Hi Drummer girl

    I was so moved by your post I wanted to add my voice to those of all the other wonderful people who have responded and to say how utterly true and honest your words were. I haven't actually been back to Talking Point for a couple of years but when saw the thread for your post I had to click on it and read what you said and how glad I am that I did.

    My father developed Alzheimer's back in 2002 and his disease progressed slowly but surely including bouts of tremendous rage and violence. To begin with he lived at home but my mother couldn't stand having him at home and had him sectioned and I took over responsibility for him in 2009. We had years of all the problems you mention in your post which were compounded by my mother developing Alzheimer's herself in 2010 and I lived a 100 miles away. My brother lives in Singapore and became "invisible" as well, leaving everything to me to manage. My father died in 2012 (a merciful release to be honest) and my mother is now in a home a bit nearer to me but is declining rapidly and the home seem unable to cope with even simple medical interventions so I spend hours every week sorting things out for her, managing all her finances and dealing with the increasing medical emergencies. Even getting a walking frame for her has taken forever!

    So, every word you wrote resonated and made me both laugh and cry because of the ignorance and blindness that exist outside of our experiences from people who have absolutely no idea what it takes to look after someone with dementia.

    Well done and you have all our admiration and respect for putting into words so eloquently what we all live with.

    Love, W4S xx
  7. nursecarer

    nursecarer Registered User

    May 17, 2013
    God Bless you

    We are all with you in this and feel your pain & frustration. Know you are not alone and that we care for you. Sending lots of hugs x
  8. sheepish

    sheepish Registered User

    May 14, 2014
    this should be a poster. I guess the only solace is that we are all going through it.
  9. Kansas

    Kansas Registered User

    Jun 16, 2014
    A stunning arrangement of thoughts!

    Hi, this is a powerful description of something I can understand, and yet have no experience of, and I really want to thank you for the time taken to write this.
    I have sent you a message, as I feel that this could help so many others whom I frequently come into contact with.

    Can I thank you again for your post, and obvious support of people who care for Alzheimer's sufferers!

  10. LCH

    LCH Registered User

    Jan 8, 2014
    Oxford, UK
    Thank you for this post. I rarely post, mostly because I don't have enough time or the emotional fortitude to come on here. Your thread caught my attention. It is so true. I would also add the following.

    They don't tell you that when your loved one's emotional behaviour (through no fault of her own, it is the dementia) upsets other residents that you will be blamed for it by care home staff and have to attend countless meetings where they threaten to evict her.

    They don't tell you that you will have to fight to get any sort of medical follow up after the initial diagnosis and will face endless battles when the medication is not right and has to be changed.

    They don't tell you that even though you care for your loved one every morning, evening and through the night as well as at weekends (when she lived with me, we paid for care while I was at work) it is not considered full time unless you care between the hours of 9 'til 5, therefore you are not entitled to any form of financial support.

    They don't tell you how inflexible the consultants meetings can be and that you will be expected to take time off work at least once a fortnight to attend these meetings, most of which are pointless and heartbreaking.

    They don't tell you how to cope with your loved one phoning you at work for the 10th time that day in absolute hysterics because you haven't spoken to them/seen them for week, despite daily visits and numerous phone calls.

    They don't tell you how you will dread visiting your loved one for fear of what you will encounter. Will it be a good/bad day today? Will I be called into another meeting?

    They don't tell you of the guilt and grief that accompanies the feeling of relief when the situation gets so bad or violent that you have no choice but to allow someone else to care for them for a while.

    They don't tell you how fast this disease can progress, far outstripping the speed at which the support services work at. My mum has gone from being relatively independent and running her own smallholding less than a year ago (she was just starting to struggle this time last year) to being unable to do anything (walk, use the bathroom, eat) without assistance. It changes on an almost daily basis.

    They don't tell you that sometimes Alzheimers will cause severe psychoses, depression and anxiety until after it has happened.

    They don't tell you how you will become the enemy.

    They don't tell you that you will be on your own dealing with this.

    Even though they do say it is difficult and sad, they don't tell you just how heart breaking it will be and how crushed you will feel everyday.
  11. SeniorAngel

    SeniorAngel Registered User

    Jul 30, 2014
    Glos & Worcs
    #91 SeniorAngel, Oct 31, 2014
    Last edited by a moderator: Oct 31, 2014
    This needs more exposure

    I concur that Cancer gets a regular airing on these channels, yet Dementia and Alzheimers do not. I assume partly because D & A are seen as being 'old peoples' issues (even though we know it's is not necessarily), and many of the the younger population do not see the relevance to them, nor do they want to be reminded of their own (eventual) mortality, so a challenge to make them hear!

    As others have said, the only way things are going to change, is if this terrible disease and the impact on carers, gets the exposure it should have, to as many as possible. And what better way than the papers and TV.

    I work in a field where I have regular contact with those affected, as well as both my sets of parents having various degrees and variations on D & A, so I empathise with all on here and feel very strongly that more needs to be done to drag this subject kicking and screaming into the limelight!

    I cannot promise anything, because I know how difficult it is to make the media listen to this sort of thing and take action, however nothing is lost by trying...
  12. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    No, they don't. And nobody believes I can't get any help where I live, but I can't. For anything. Not just the dementia. I just don't bother talking about it anywhere, any more. Just try to assume cheerfulness as often as I can. What else can I do? Slip into moan-mode constantly? That would be morbid.

    Please, Drummergirl, come here as often as you need to. Either to vent or to ask questions. There's always someone who can advise, on here.

  13. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    Wow, Grace. You've been laughed at as well? I've heard it all, now. That happened to me, some months ago. I won't say who did it. The profession they claimed should have told them to do better than that.
  14. SallyF17

    SallyF17 Registered User

    Aug 17, 2014
    A more highly skilled and experienced workforce - with former carers as advisors

    Like everyone else, I'm really sorry that you're having a particularly difficult time although some of your grievances will be universal. Working in this field myself I think we need a lot more highly trained expert nurses or advisors. Perhaps Admiral Nurses should be the experts and they could manage teams of support workers (so that you get to see your named support worker every week). Too often Social Workers don't know what difficulties dementia can bring and mental health professionals only get involved when things have become more "challenging". There is clearly such a lot of expert, tried and tested knowledge that current and former carers have, this should also be used. Carers' support groups help if carers can talk away from their relative about how things really are. Professionals should work more closely with the voluntary sector to support these groups - as they can learn from each other. When will a government actually invest to expand and train up this workforce!?
  15. Xmasdaybirthday

    Xmasdaybirthday Registered User

    May 30, 2014

    I have sat for some time after reading your post wondering how to give you some advice or comfort as some of what you have said I also had to cope with. Sometimes I could explain to Dad why he needed to wear incontinence pants and he would nod his head and say he understood then 10 minutes later he had taken them off and wet the bed and floor. The bottom line is nobody really understands unless they have had to cope with this. Its heartbreaking to see someone you love revert back to needing every part of their lives managed by someone else. Its not living its existing. I can only say keep posting, keep talking and take every bit of help and support you can find. BREAKS are essential and will keep you sane. The Alzheimers Society and local Carers groups were brilliant. I wish I could help more.
  16. juicy13

    juicy13 Registered User

    Jan 22, 2014
    Moved to tears

    What an excellent post and so very very true.
  17. Jax55

    Jax55 Registered User

    May 29, 2014
    My mum has vascular dementia and I've been caring for her for nearly two years.
    Although she doesn't present with some of the challenge behaviours you are dealing with, I understand where you are coming from.
    You're not alone. Stay strong however hard that feels. x

  18. Suer

    Suer Registered User

    Oct 11, 2011
    So true

    I rarely post on here but as anothe poster said I keep thinking about this post and how it so clearly expresses all our experiences.when mum was first diagnosed I wondered what people got so upset about!! At that stage she was still articulate and aware of her surroundings and condition -in fact she had been the one to go to the GP as she knew things weren't "right" . I thought (stupidly) that I would be able to deal with it, just speak to Mum calmly, don't ask her to make decisions, keep her all know the advice that is handed out by people who really have no idea. Once her condition deteriorated all Its wanted was someone to tell me what I should be doing, what I could expect etc. The Memory clinic nurse said she could send me links to websites (clearly didn't think that I could do that myself) and didn't see why I wanted to meet the consultant again who had met mum for 5 minutes 2 years ago, as for social services don't get me started!
    Sorry , gone off on one!
    Really just wanted to say that drummergirls post should be required reading for all politicians and even for the so called experts. I would be happy to join in any coordinated action to do this, maybe the news that dementia is now the biggest killer for women may make more people take notice...although I'm not holding my breath.
    Thank you drummer girl for saying something so perfectly
  19. Jax55

    Jax55 Registered User

    May 29, 2014
    Yea don't get me started about the politicans.
    I've said this before here on a different thread, I'd like to hear how David Cameron would cope cleaning up his mum's poo on a daily basis!!!

  20. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    He'd have to be one of us, struggling to pay for anything to understand. As it is, I reckon he would never be in our position.

    I'm actually glad there are some who will never have to struggle. I've read a few books where people had family and friends on tap, and enough money to call in their own help. Sadly, that's just not true for most of us. But you know what? Whatever we in the real world face, at least we can look up sometimes and say: "I got through another day, and my loved one and I are still alive."

    Much love and courage/strength to us all.

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.