They don't tell you these things...

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

  1. Spamar

    Spamar Registered User

    Oct 5, 2013
    Oh, I so agree with practically everything!
    Earlier in the thread there was talk of publicising this. I would so like every politician and county councillor to get a real feel of what Carers have to do. Anybody got any good ideas?
  2. Cucu Mzungu

    Cucu Mzungu Registered User

    Nov 11, 2011
    Save yourself as soon as you can.

    Hello Drummergirl,

    Your post was very sad and it sounds as if the tasks are relentless.

    I think I have understood you to say that your mother no longer knows who you are ...or is it just your name she forgets? Which ever it is I think you should try to move however much of heaven and earth you need to move to get her into a care home. Her life is ruined...And. yes, you are clearly helping her and giving her some comfort but at the expense of your own life and the things you have wanted.

    If you had asked her, when she was in her right mind, if this is what she would want, what would she have said? You said she was kind and gentle so I can't imagine that this is what she would want for you.

    My Mum, who is 93, is not nearly as badly affected as your Mum but all the same the personality switch is hard to cope with - at times it is as if the sky has gone green, or the sea is made of rice - or some other unlikely thing.
  3. jfmb

    jfmb Registered User

    May 25, 2014

    When I read this I realised I wasn't alone in the fight just to get the medical people especially the useless GP and psychiatrist - and why a psychiatrist and nor a neurologist, do people with MND and parkinspn's only have a psychiatrist who is clueless - it's bad enough dealing alone with my mother 24/7 but the fight every week just to get someone to take interest in her condition or latest UTI etc. I feel for you I really do

  4. silverlight

    silverlight Registered User

    Oct 31, 2014
    I'm on here even tho I have been a carer to the elderly, it is so difficult when it is on a personal level. Thank you for your statement, it resonates with many on us, the despair and frustration and I'm only on the first rung of this ladder with my mum. I'm 63 dealing with this and its hard, so I know it must be hard for youxx
  5. lin1

    lin1 Registered User

    Jan 14, 2010
    East Kent
    #105 lin1, Oct 31, 2014
    Last edited: Oct 31, 2014
    They don't tell you that the SW would laugh out loud when mum started Sundowning during the assessment.
    She soon stopped when she saw the look on our faces.
  6. sundaygirl

    sundaygirl Registered User

    Sep 21, 2014
    I know exactly what you mean, particularly the bit about family members who become invisible......

    My older sister and my brother have been invaluable, particularly when my dad's condition rapidly deteriorated.

    When we tried to contact my other sister, to let her know my dad had had a particularly bad 'episode' (which ended up with him being admitted to hospital as an emergency case), we found she'd barred all of our numbers from her phone, including my parents' number, presumably so that she wouldn't have to deal with any crisis that arose.

    That sister is however, quite happy to visit the hospital for 15 minutes each night (she lives a comfortable 10 minute stroll away), because the nursing staff have, of course, taken over the burden of my dad's day to day care for the moment - and she knows she won't have to get involved in any of it.

    My mother is singing her praises and it's getting harder to bite my tongue and point out that when it came to the crunch, that sister had no intention of dealing with all the awful, heart breaking, heart wrenching things that we've all had to see and cope with. Sorry for the venting....
  7. Kate Grillet

    Kate Grillet Registered User

    May 30, 2011
    Kate G

    I feel for you, specially that you have to learn everything alone and 'the hard way'. If you have time, read John Killick's book Dementia Positive and John Zeisel's book 'I'm still here' (very good on the causes of difficult behaviour). My husband had Alzheimers for 18 years and I looked after him at home till the last 18 months. He had NHS Continuing Health Care funding for 5 years (which I had to fight for) and we spent it on a succession of live in carers, so I could share the task and get some sleep and go out sometimes. We gave up the drugs, which had bad side effects and seemed to make him sleepless and much more anxious, and concentrated on outdoor life, singing, good food; but it was hard, and when he died in 2012 it was a terrible loss and I miss him every day. I read the research about Coconut Oil and it seemed to really help him to be calm and relaxed. So much more I could say - I wish you well. Maybe a Dementia Friend could support you - try their website too.
  8. drummergirl

    drummergirl Registered User

    Jul 4, 2012
    Hi everyone

    I just wanted to check in and thank everyone for your very kind comments, and for reading my post in the first place. I've been very moved by all of the responses.

    It's really comforting to know there are so many people out there who feel the same way, and who want things to change. I really hope we can make it happen.

    Thank you

  9. Pepper&Spice

    Pepper&Spice Registered User

    Aug 4, 2014
    Hi Drummergirl,
    Have already responded to this but seeing another comment from another user I have posted your article on my facebook account and asked people to read and share - I don't have many "friends" but many I'm connected to do and you never know who you might reach !
    Have also been selected at random to take part in a carers survey by my local authority and have mentioned your post on there as required reading !
    We Will get ourselves heard - one way or another and maybe, just maybe someone will listen who has the power to change things.

    Take care and love & good luck to All.
  10. father ted

    father ted Registered User

    Aug 16, 2010
    All previous posts have said what I would have done but just to say how eloquently and gut wrenchingly accurate your post is. All of us on this site will have experienced some or all of these things and you have really hit the spot. Eventually respite will come your way and I simply say that you have a talent for putting into words the worries and sadness of us all it is so valuable so perhaps you could write a few articles for relevant publications.
    Stay strong. x
  11. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    Drummergirl, tell ya wot - you might also try going on G+ I'd love to share this there, if possible, as I'm not on FB any more.

    What do you think?
  12. jude_hay

    jude_hay Registered User

    Aug 17, 2014
    what they do tell you

    Call me cynical but I used to be a senior manager so I am no idiot {then again.....)

    They do tell you to fill out forms - dozens of then
    hey do tell you to send in documents actually usually that the person concerned needs to bring in the documents - yeah like that's going to happen!
    They do tell you that your mother would be better in a care home and you should sell her house and put her in one - rendering you homeless - of course that is so supportive
    They do come in the morning after previously visiting in the late afternoon so they can note an improvement when doing the assessment
    They do ask you to answer questions you dont know the answers to like how does she feel after x y or z - hmm listen sweetheart getting any answer would be good let alone a reliable answer
    They do try and talk to her on their own and having stood like a naughty schoolgirl with ear to said door I could hear them trying to persuade her to sell up and telling her how I couldnt manage her care - well maybe if they were more help and less pain in the rear I might just get somewhere
    They do tell you to ring this number - repeat three times and you will find yourself ringing the original number
    They will tell you you can access all manner of support - sounds fab on paper
    rarely works in practice
    They will tell you to document how much care do you actually give a week - did that and they dont believe me - or is that because 70 hours plus a 40 hour week job seems like I might be overstretching myself
    And the best?'times for carers to support me - Im lucky they come 3 times a day BUT I cant choose the times even though I pay for it.
    So somewhen between 7 and 11.30 am somewhen between 4 and 7.30 for tea and between 8 and 10 for bed
    Last week we had a call at 11.30 after a put to bed the previous night of 8 this week they gave her tea at 7.30 and a different carer arrived half an hour later to put her to bed. After she has has had 4 hours sleep she wants to be up and talking to me as I finish work and get home around midnight. So I exist on snatched sleep, extended hours and heaps of criticism and awful as this may sound I jolly well resent it and am sometimes not as great a carer as a should be. I cannot for my own sanity sit with her all day every day - and now I feel guilty for being a me me me person but hell aren't I entitled to some help too or don't I matter at all
  13. lizf

    lizf Registered User

    Nov 11, 2013
    Dublin, Ireland
    Jude, wish we all could be in a great big room and all shout together… wish we all just lived close to each other and be there to laugh, cry, shake fists at the great who knows what is the sky.
    It's s""t…it really is.
  14. lizf

    lizf Registered User

    Nov 11, 2013
    Dublin, Ireland
    What is it about this forum? just as i'm in the middle of some issue and lo and behold someone else is in my parallel universe…. drummer girl so with you, get every single issue you express so well. I'm in Dublin, Ireland so can't join in the campaign, but have been mulling, during my long wakeful nights, how our stories can be told and truly heard. So many ideas, not enough time or energy in my day to follow through. I kind of think that is part of our problem, we just haven't got the head space, energy, or time. so the status quo remains.

    After so much pushing ,my Mum, very offhandedly, had a diagnosis LBD last Friday….like all of us here, such a long, complex, emotional story which no-one has the time or inclination or sometimes energy themselves, to really attend to. No one really understands why the diagnosis was so important. By the way, the LBD website and forum is also good for information and support. Just recently discovered it.

    This caring malarky is isolating and very very lonely. We can feel so disempowered, patronized, dismissed and disbelieved. I've been on the other side of this, that is a health care professional for years. Phew, what a know all patronizing madam I must have seemed sometimes. Really wish I knew then what I know now. How can we get them to listen?

    Something broke in me about 2 months ago now, I send e-mail after e-mail to a range of people, don't care anymore how coherent or reasonable I sound. Is made me a 'special case' that's gotten me some interaction I wouldn't have otherwise. I think I sound a bit mad:) No real practical support as yet. I think they are just trying to get me to just shut up. Absolutely no change in an awful system. It's not good enough. I'm now viewed as difficult, expecting too much, a know all.

    Nope, I just have a inkling of what could be possible, I know what works for Mum and myself. I just want a smidge of collaboration and working from our goals and agenda. I want to keep her at home with me. It could be possible, just listen…..

    The fight has nearly broken me time after time, I'm so exhausted. I have collapsed 5 times now, just my body saying will you just stop. Happened again last night, but you know what, I'm not giving up. Came round to Mum calling for help to a commode and yet another cup of tea….There's just me.

    Our lives are so full of stories, courage, ingenuity. The people we love and care for shouldn't be voiceless, dismissed.

    I've haven't had a full nights sleep in months, I'm virtually housebound. I don't have a life, only 1 really supportive friend in this country. But I feel like a terrier.

    Hopefully I get a break in the next month or so. My first break in 5 years.
    The only other time I've been away for night was 3 years ago, as an in-patient for the treatment of my breast cancer. I actually choose a research trail, having 30 sessions of radiation in a week, as I knew i couldn't cope with caring for Mum otherwise. Not joking, it was the nearest to a holiday I have had before or since. Never been off duty since.

    I can't leave our story untold. Some of my time during respite will be used to start a blog, can't do it now it's too much. I will keep it anonymous, Mum would be horrified. But warts and all, mine included:) But I need to shout it sometimes, I won't really rest until I can. I have an enormous list now of e-mails of politicians, clinicians I'll shout and say please please listen and attend. If nothing else, it will be helpful for just me. I can't think of what else I can do.

    I've spent my long nights awake researching and educating myself on best practice and initiatives world wide. My bookmarks and bookcase is bulging. I've read more policies mission statements and research than, oh, who knows. So much sad repetition, all reinventing the wheel. But no change where it matters, behind our front doors day in and day out. There are some lovely ideas and oasis of great practice…haven't seen a hint of it here. I've had some really lovely people attempting to help, the system/current philosophy will burn them out in a few years.

    My own training, professional experience has given me an unusual perspective. I've tried framing things as constructive feedback, don't get anywhere with that one!
    I sometimes feel like getting these folk by the shoulders and shaking them out of their compliancy. This could be them, or a loved one, is a few years, caring or being cared for.

    I'm not giving up. Of course I worry for my health. I'm not foolish. But there's is some juice in me yet:)
  15. Mal2

    Mal2 Registered User

    Oct 14, 2014
    So true. Sufferers (most of them) are oblivious of the illness. My husband in the first few years, would say "My memory is bad these days", but he never connected Dementia to the problem.

    I watched Terry Pratchett's two t.v. progs. which I found were interesting. I may have it wrong, but, I understood he does not have the 'normal type' of Dementia. Everything goes blank on the pages when he reads. I presume it has the same outcome eventually. There are different types. Perhaps that is why he thinks people accept the illness, which of course they do not. As you say, he has brought the problem to people's attention.

    Don't worry, when your wife does get incontinent, you will manage, very well, most of us do. My husband has been double incontinent for 18 months now. I was given a hoist 6 months ago. I put the harness around him, hoist him up, I change, wash and dress him.

    There will be help available, at a cost, of course.

    I asked for someone to help get my husband into the shower, once a week. The cost 12.95,for 45 minutes. The guy that came, asked me to help him, as he thought my husband might fall. Should I have requested a 50% discount? ha! ha! Someone come to access us financially, ( now, the council know more about our finances than we do). For my husband to have the shower and two days at a day centre ( they thought it would be good for him) the cost was 108.95 per week . Where do they think we find this amount of money? Only council tax is taken into consideration. Gas, Electricity, Water or any bills, etc, are not. Needless to say, we didn't have either services. I manage on my own. You will manage fine. Good luck.
  16. madamet

    madamet Registered User

    Jun 3, 2014
    Thank you

    Thank you so much for your honesty. I am having great trouble accepting my husband's diagnosis of mixed dementia and it IS the practical things that worry me most.
    :) It sounds to me as though you have had very little support. Your doctor sounds appalling! are lucky here that there are support groups.Have you tried Crossroads? They can give you a few hours off each week.A real lifesaver.
    The best 'nappies' are the pull-up pants.Much easier to deal with than pads.
    All the best.
  17. Welsh Colleen

    Welsh Colleen Registered User

    Mar 23, 2009
    Thank you for putting into words everything I've been feeling.

    I agree this should be published. There is so much press and media coverage of Dementia at present but as has already been said, it doesn't say it as it really is.

    My husband has Dementia with LB, I know it's LB but his consultant still only says Vascular.

    I'm tired of friends telling me he'll be better in a home. I don't want him in a home...he doesn't want to go in a home. We feel we're being forced down a route we're not ready for.
    He may now need a placement as he's recovering from pneumonia and the infection seems to have pushed him down the steps a little further.
    He's now very hostile towards me, frustration I know, but very difficult. Yes I know to walk away but that's hard in a two bed roomed bungalow, and especially when he's holding me by my wrists with such strength!

    He's at present in respite (while I recover from a sinus and throat infection) at a lovely home that's 60+ miles from me, as where we live there are only two EMI nursing homes, near. One I won't put him in ever, and the other is full, and that's still 32 miles away.

    Social workers are fed up with us as I won't just place Hubby where they say or when, and when we've tried respite and I've brought him home, when I've found him sat in soiled clothes, or he's fallen and they haven't told me, or he's just been so unhappy at being with these old people who do nothing.
    They keep telling me 'well when he needs it, the homes won't take him'

    I know there'll never be a perfect home, but I want to care for him here for as long as I can.

    I can if I have support but it's not there when I need it.

    Crossroads come in one afternoon a week, and he goes to a centre twice a week, for four hours. He can't go at present as he's still recovering from pneumonia.

    I work freelance so I pay for extra care ( if its available) when I'm off teaching.

    I don't need carer's to help during the day, as I don't want someone coming in at 7 am to give him a cup of tea, when he (& me) only went to sleep at 5, after another restless night!

    Admiral nurses are what we need, Help at night is what we need,

    So much has been done for people with cancers. rightly so, but now it's time the same resource and understanding was given to Dementia.

    Dementia is hidden away. We are all coping in our own ways, mainly behind closed doors, shut off from friends, family and life as we knew it.

    I have written to my MP, who missed the whole point of my first letter, and has not even replied to my last rant!

    I'm now left to wrestle the hardest decision yet:(
  18. Phloxfairy

    Phloxfairy Registered User

    Apr 30, 2013
    I found this a very moving post. My hb has FTD and I belong to the Ftd on line support forum. With your permission I would like to share your post as it resonates so much with the situation we find ourselves in. I really despair at times how carers are treated.
  19. RedLou

    RedLou Registered User

    Jul 30, 2014
    The other thing they don't tell you is how everyone has an opinion on what you should be doing - the neighbours and friends who think you could somehow have found a solution that would make him happy as well as kempt and cared-for and safe, even though the only thing that would make him happy is if you could fix his brain.

    For a subject that's so discussed these days, there's surprisingly little education on the need for 'outsiders' to keep their opinions to themselves when they know nothing about the mechanics of dementia and haven't experienced what it is to be a carer.
  20. chick1962

    chick1962 Registered User

    Apr 3, 2014
    near Folkestone
    Well said and I fully agree for me the hardest thing is that shortfall of empathy, dignity and morality of SS and all these so called services who are mend to help and support us but who unfortunate see only finances and numbers

    Sent from my iPhone using Talking Point

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