They don't tell you these things...

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

  1. Oxy

    Oxy Registered User

    Jul 19, 2014
    #21 Oxy, Oct 11, 2014
    Last edited: Oct 31, 2014
    Would suggest that at the very least the so intelligent and poignant thread starter should be sent to a broadsheet but maybe also one of the more sensationalist daily rags. Multi pronged attack needed.
  2. Pepper&Spice

    Pepper&Spice Registered User

    Aug 4, 2014
    How true - let them all walk a week in our shoes and then have the cheek to tell us what we "should" be doing. WE are doing our best, pity the same can't be said of those who should know better. The things you said are so true, it's such a comfort listening to you all & knowing, on the third morning of changing the bed, nightie etc and having run out of dry bedding before a mad dash to work, that I am not alone !
  3. Anongirl

    Anongirl Registered User

    Aug 8, 2012
    Sorry Sue, cleared now xx
  4. btuma5

    btuma5 Registered User

    Sep 9, 2014
    Oregon US
    #24 btuma5, Oct 11, 2014
    Last edited: Oct 11, 2014
    Sorry I haven't got back with you I lost the board and how to post

    I'm not even sure if this is going to the right reply. You're right they don't tell you a lot of a lot of it wouldn't be believed if they did. The testing does not have a baseline for the intelligent just for those of that age and education. It's geared to when the person is well down the path and we can get lost in the meantime. I'll leave as short story I wrote in hope the literary sense strikes the heart like the words of a song are nothing without the notes. It basically tries to bring all the "they didn't tell me" to the impossible process and the possibilities. If it makes sense I hope it does

    Restoring by Remaining- A short story to describe the indescribable patient's trek

    All of this is more difficult than I had imagined. I wasn’t given a choice. It was given to me. Now I, and I alone, will attempt to save what I can before time makes it worthless.

    When you look at my task you see a large old cedar trunk that needs to be restored. In my heart’s eye I see a closing mind of dementia, and my task to appear the same. The large cedar chest still has worth, and the amount of value will depend on how well I can remove the stain.

    I walked around it several times. Why? I don’t know. It was the same chest of my youth. I had walked by it each day as I went to work or to play or to visit family. You would think it would be familiar, but before it was just there and served its purpose without notice. It stored the trinkets of my childhood, the athletic medals of my youth, and the essays of my work.

    Somehow the lock became jammed and the most skilled locksmith have tried but failed to retrieve its treasure. The value is inside but unreachable. My task was to make the outside as pretty as possible so someone, not knowing the treasures inside, won’t come and throw it as trash or place it in the dusted back room of an antique store with other such chests.

    I stopped walking and got on my knees to feel the once fine wood. My fingers could feel more than eyes could see in the darkened room. The wood smith, creator of the chest, had skillfully lathed the wood so the corners were softly rounded unlike any other chest. This wasn’t just another chest. It was specially made, and I had to restore it.
    My fingers felt the normal small dings of any old chest, but then they fell into deep gashes which years ago had almost split the wood.

    I had forget those marks, but the creator made the chest strong enough to weather the wear. Then I remembered what left the marks more vividly than the moment. I saw the marks and forgot the beautiful rounded corners.
    I wanted to get up and leave the marked chest. It disgusted me now. Then I remembered my task that only I could do. I needed to leave something of beauty for others to see.

    At first I wanted to putty the marks to hide that they ever existed. But they did and they had, and if I was to restore the chest I wouldn’t hide what it was.

    So I worked and polished and restored what could be restored. I soon found my hands were clumsy and I didn’t follow the needed steps. My efforts were futile but the more I worked the more my hearts saw the treasures inside. And I remembered.

    Soon I knew others would still see an old chest, but I, but I, would know the treasures inside. I worked on for that day and now today to make what I can of that chest for others to see. Yet, it is not what others see that will measure the beauty of that chest. It is the treasure I know lie inside, and the warmth of knowing the Creator has made a chest whose beauty will never fade, and He one day will restore in even greater beauty what had been and what will be.

    Finally my work made it clear. My task could not be completed by "me and me alone" but by me and Him who had created and His Spirit who does restore. I am too weak but He is strong and forever near.
  5. Sue J

    Sue J Registered User

    Dec 9, 2009
    btuma5, thank you that is so beautiful:)
  6. jeany123

    jeany123 Registered User

    Mar 24, 2012
    No they don't Drummergirl because they have no idea what it is like, how could they, you have to be there to understand, They all think they are experts when they have had half a hour dementia training,

    It's very sad but true post,

    I am sorry you have to go through this with your mum life isn't fair is it,

    Jeany x
  7. whoneedsaname

    whoneedsaname Registered User

    Oct 11, 2014
    Thank you

    I have never posted before but I registered specifically as I really wanted to say thank you for sharing this. Before I read your post, I didn't think there was anybody who would understand to such a degree (packing bags, incontinence pads, imaginary children, social services, even the friends and family thing). Your post really resonated with me. There are obviously no solutions but knowing that there are other people (in a similar age group) out there going through something similar definitely makes me feel less alone.

  8. Anongirl

    Anongirl Registered User

    Aug 8, 2012
    Welcome Whoneedsaname xxx
  9. clareglen

    clareglen Registered User

    Jul 9, 2013
    Spot on drummergirl. You sound so young too. My mum has Lewy Body but fortunately thinks I'm her mam. I know she can't help it but the dead relatives etc., get on my nerves. On another thread I found a link to these videos. They are soooo good & some about Lewy Body which tell you that the Lewy Body, when trying to move, actually makes the person do the opposite eg., trying to get them up off a toilet.
  10. Miss Polly

    Miss Polly Registered User

    Feb 12, 2014
    Drummergirl, that is the most articulate and poignant thread I have read on here. And it's all so true. At least I had marriage and children before having to look after Mum. I can only wish you the very best of luck.
  11. Grandma Joan

    Grandma Joan Registered User

    Mar 29, 2013
    #31 Grandma Joan, Oct 12, 2014
    Last edited: Oct 12, 2014
    I totally agree with every word you have written. Every single comment, we have been there too. When we were struggling in Dad's last few months it felt like we were headless chickens being sent from pillar to post . No-one was actually physically helping us, just suggesting this phone number or that website or "signposting" us somewhere, I wanted to scream -regularly.
    What we actually needed was one to one input from an expert who would sit down patiently and help us to understand what was happening and why and what might happen next and how we should prepare ourselves. Someone like a macmillan nurse but obviously someone with experience with Dementia. I know there are Admiral nurses but these are few and far between and not in our area. This is what I really feel Alz Soc should be raising awareness of. All these macmillan coffee mornings are really winding me up at the moment - I give generously but wish there was the same interest and provision for people living with Dementia.
    Mental health Service were less useful that a chocolate tea pot, and GP's only advice was to put Dad into a home.
    In order to protect our own health, Dad was admitted to a local EMI unit. It broke our hearts, and his and 6 weeks later he died.
    A year on we are at peace (almost) and he is too, no more struggles.
    I hope by sharing, you have lifted your load a fraction, everyone here knows how it is, even if THEY don't.
  12. Grace L

    Grace L Registered User

    Jun 14, 2014
    NW UK
    #32 Grace L, Oct 12, 2014
    Last edited: Oct 12, 2014
    All of what drummergirl posted.... and the some....

    Thank you for your post drummergirl. If only people realised.

    They don't tell you your day 'starts' when your husband (wife, mum, dad etc.) gets up.
    You've finally settled them into bed at midnight, but are up again at 4am, then that when your days starts.
    And you have to do this with the biggest smile, and never complain that you are tired...

    They don't tell you you will be sleep deprived, and when you do sleep, you will always have one ear open....

    They don't tell you that Social Worker and CPN will disagree 100% on Alz/love lies.
    My husbands Social Worker told me I was to tell the truth at ALL times, never love-lie...
    CPN knew why I had to do this sometimes, and agreed with me. SW insisted on a special meeting.

    They don't tell you how angry your in-laws will be that you called the Police when you husband has gone missing....

    They don't tell you that if your husband doesn't stop the violent outbursts (that he had no control over!!) , then home care support would be withdrawn...

    They don't tell you that some people will think VaD/ Alz is 'funny' ... and openly take the mick...

    They don't tell you that when people 'do ask' you how you are... they don't really want to hear the truth...
    either that, or they don't listen...
    I had ... from SiL... "Well.... how is he?".... and before you answer.... I don't want to hear anything negative"...

    And .... they don't tell you that your relationship with in laws (that you once loved) , changes forever....
    They don't tell you that people who never ever see you, have better ideas on how you could care...
  13. Isabella

    Isabella Registered User

    Jan 4, 2014
    Thank you drummer girl.

    I always feel selfish for thinking this, but I was 33 when this started and I feel like not only did this disease take my mum so suddenly and viciously but it took the person I was too. My friends have amazing lives, they have fantastic social lives, that I so envy. Even though mum is in a home now and I technically can take the time for these things, something in me is different. I just find it so hard to enjoy things like I used to. There is always that worry following me around about what phone call I'm going to get next. And I wonder if I'll ever stop being so tired and sad.

    And someone commented on here that when people ask how's your mum? there's no way they want to hear the truth. It's true. People mean well but they would be horrified if I told them I spent the first 30 minutes of yesterday's visit cleaning up her and the bathroom because she doesn't remember how to use the toilet.

    Thank God for my Talking Point friends who understand.
  14. drummergirl

    drummergirl Registered User

    Jul 4, 2012
    Thank you all very much for reading my post. I'm overwhelmed.

    This forum has been an invaluable source of advice over the last few years - a lot more help than any article!

    Looking after mum can feel painfully lonely sometimes, so although it is depressing that there are so many of us going through this, it is very comforting to know that there are people like you all who do understand.

    It amazes, and angers me, that although there are so many people having to deal with this horrendous disease there is still such a lack of support and awareness about what it is really like. I'm sick of feeling like my mum should be hidden away just because people don't understand.

    It should not be like this. I am going to take your advice and try and get my original post heard. Thank you again for all your kind words - I really do appreciate it.
  15. win

    win Registered User

    Oct 14, 2012
    Would you consider posting this on Facebook Dementia Awareness group? It is invaluable for people to learn what Dementia really is all about.
  16. jeany123

    jeany123 Registered User

    Mar 24, 2012
    Drummergirl I keep reading your post, I can't think of anything more to say but all of your comments are so true,

    Jeany x
  17. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013
    Oh yes! Please spread this wonderful description as far and wide as possible. Drummer girl, you speak for so many. Thankyou.
  18. gillybean

    gillybean Registered User

    Jan 17, 2007

    I think your posting is so poignant and all of us on here can relate and identify with some if not all of your points.

    Why does it have to be this way? It's awful, just awful but we all understand on here...
  19. Kitten71

    Kitten71 Registered User

    Jul 22, 2013
    East Yorkshire
    No, they don't tell you any of this. My dad (Lewy body) has a relative who is a supposed expert on dementia. Even she has no idea. Every time we tell her of a struggle we've had she just says 'use your key words with him'. The trouble is, he doesn't have any key words that can ground him back to the present or a calm place in the past, because he is living in a world of hallucinations and we have no idea what he thinks he can see!

    My dad was admitted to hospital and discharged without a care plan in place so I know all about those pointless meetings with social services, and endless bureaucracy and red tape. It's just never ending. My dad was scammed out of his life savings to some con man in Spain. I had the heartbreaking moment of having to tell him his money had been lost, not invested as he believed. The policeman I spoke to clearly thought I was deranged reporting such a crime and I ended up shouting at him that I was not a gold digger, my dad could stand in the street and throw his money in the air for all I cared, but I'd rather it didn't go on drugs and a luxury yacht in the Med! Two and a half years on, police interviews, statements, social services visits, bank appointments, email and telephone number changing, and we learn that a team of people have been arrested! That's really great and I'm happy that they can't devastate anyone else but too late for my dad and oodles of stress for the family.

    Every comment you made rings so true, my heart goes out to you and it sounds like you are doing a wonderful job for you mum, even if it doesn't always feel like it xx
  20. Rettaere

    Rettaere Registered User

    Sep 30, 2014
    So so true

    Please get this seen by the people in the Uk,It's so true,even though I haven't cared at home and see my aunt in care home.I watch,observe,sw doctors all so wrong.They don't know what worry is,stress of over thinking,trying to make people with dementia happy.It is 24/7 non stop and it should be high lighted! Please for all the carers,for all the people with dementia.You said it as it is,send to papers.Big hugs and thank you x

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