1. Casbow

    Casbow Registered User

    Sep 3, 2013
    989
    Colchester
    I feel such a fraud. I read all of the comments from all of you lovely people who are all having such a bad time and I feel so miserable with my life that I wish it was over. Why is it that I can't cope as well as you all seem to somehow manage. I am really struggling to keep going, but so many others are suffering so much worse. I am so sorry to be so weak. Sorry to even be writing this.xxxxxx
     
  2. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,923
    Yorkshire
    #2 Shedrech, Feb 8, 2016
    Last edited by a moderator: Feb 10, 2016
    Casbow, come on - don't be daft!
    We're all in this - no comparisons - no better or worse - we each do what we can and sometimes we just can't any more
    It's good that you write here - always come here to write whatever and whenever
    Your life is of massive value
    Did you ever come across a poem called Desiderata - it helps me sometimes

    http://www.cs.columbia.edu/~gongsu/desiderata_textonly.html

    I've bolded a couple of bits for you

    Many fears are born of fatigue and loneliness. Beyond a wholesome discipline, be gentle with yourself.

    You are a child of the universe, no less than the trees and the stars;
    you have a right to be here.



    a warm blanket of sympathy to wrap yourself in tonight :)
     
  3. tigerlady

    tigerlady Registered User

    Nov 29, 2015
    427
    You are not a fraud and you are not weak! You are looking after a person with worsening dementia and you have coped. Eventually, a lot of us reach a point when we cant cope and we have to ensure that our loved ones get more care than we are able to give. You are still coping, but there should be no shame when you can no longer cope. I didnt manage - my husband is now in a care home. By that reckoning you have coped far better than me. I read what others have posted and feel that they are stronger and more capable than I was. Please don't be sorry that you have posted - here we can get rid of our negative feelings to people who understand, and hopefully move on and get through another day.

    Sending you much love xxx
     
  4. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    First of all, you're not weak, Sweetie, just tired out with it all. Who's to say who is having it worse than someone else? Or who can cope better? There's no Richter Scale for carers. And some may be able to "let it all out" when they post, whereas others try to be stoic, and then probably have a damned good cry when they turn their computer off.

    You're not a fraud, you're a carer who is tired out, and you have every right to feel miserable. Believe me, when I was looking after my husband, I often felt that I wasn't coming "up to scratch", but what is the "scratch" that I should have been reaching? All I know, as I've said many times, is I did my best.

    My best might have been better than some, and worse than others, but we can all only give what we have, and who can ask for more than that? Are you getting any breaks in your week at all? If not, perhaps now might be the time to consider Day Centres?

    I wish you well, and hope you get some decent sleep. xxx
     
  5. gringo

    gringo Registered User

    Feb 1, 2012
    1,189
    UK.
    My dear Casbow, We are all struggling.You are not alone, I am sure we all have our dark moments of the soul. This is why we are on this forum looking for, and finding, support. Having Shedrech quote Desiderata is, by itself, more than worth the entry fee! AlI I can humbly add, and I do so Shedrech, only because I see it as what the poem is all about, the original penultimate sentence is ‘Be cheerful.’ Sometimes that's very hard, so.... 'Be gentle with yourself.'
     
  6. Pollyanna153

    Pollyanna153 Registered User

    Jul 15, 2015
    41
    I am feeling something like you are now
    Hoping to get two days day care. It is really hard being a carer for dementia and knowing when you can't cope. We are all different and some people cope better than others
    I really struggling just now so need a break . My husband is a lovely person and not really a problem to look after he not aggressive or anything but it is the mental part of being a carer 24/7 that is so tiring and can also make you feel very lonely and isolated as can't have conversations now .
    I don't think either of us are weak I was told the other day that we are very brave when we come to the point and say I need help.
     
  7. LYN T

    LYN T Registered User

    Aug 30, 2012
    6,968
    Brixham Devon
    Casbow, don't beat yourself up:eek: instead give yourself a big pat on the back for being a concerned and loving Carer. You are doing one of the most draining 'jobs' that you can have. Day in, day out-and through the night-you are living with sadness and bone weary tiredness.

    Last week one of my late Husband's cousins phoned me; she is looking after her Husband who is in the early stages of AD (poor short term memory/repeating questions etc). She told me she had no patience and was upset that she wasn't as patient as I was with Pete.(her words)
    I told her there was many a time when I had to count not just to 10, but at times 50!!! She had no idea that I ever felt like that let alone that I had to take a brief time out. See how people think that other Carers are 'better' than them? We are generally all the same. Same feelings. Same problems. BUT we feel as though we should/could do more. Casbow, you are doing the best that you can-and that's what counts.

    Love

    Lyn T XX
     
  8. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,056
    GLASGOW
    Please dont feel bad. You are doing your hest and no-one can expect more. Its easy to th8nk everyone is coping better or doing a better job than you. Your doing such a difficult job. Seek help and keep at it until you get it. We are all here to support you. Live quilty
     
  9. keegan2

    keegan2 Registered User

    Jan 11, 2015
    190
    We all feel like you at some point, I often think I am complaining about things when others have got it worse..only you have put your thought's to pen which is good. Everyone's surrounding's and situations are different and where you might cope better in one scenario I might not, you are a beautiful human being trying very hard to make a terrible situation perfect, perfection should not be the goal it's too hard your best is perfect....
     
  10. Jinx

    Jinx Registered User

    Mar 13, 2014
    2,333
    Pontypool
    Life is precious Casbow, can you get any help just so you get a break every now and then, or respite for your hubby for a few days so you can recharge and remember that there is life beyond dementia. As everyone else has said we all reach the pits sometimes and that's the time to ask for help. You're doing an amazing job, one that has no thanks, no praise and no job description and as Scarlett says you are doing your best and your best is good enough. Keep posting and a big hug from me, one of the ones who had to let others take over but we all still care. xxxxx


    Sent from my iPad using Talking Point
     
  11. canary

    canary Registered User

    Feb 25, 2014
    10,235
    Female
    South coast
    ((((hugs)))) casbow, you are just worn out.
    I think many of us feel useless and that we aught to be coping better, but its just the guilt monster whispering in our ears. The usual TP advice is to get a big stick and whack it off your shoulder!!
    Im one of the stoic ones that Scarlett talks about. I try to be helpful and positive while Im on here and perhaps come over as coping very well. Well, the truth is that Im not really. My mum is entering a new phase which has upset me, my OH is going through a bad patch, my house is a tip and I keep crying. Im not looking for sympathy - Im just saying that we dont know what goes on behind the words. Im sure that you are not coping worse than the rest of us and anyway - there is no league table of carers. We all do our best.
     
  12. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    So in other words ......................... it's obvious that there are very few Joan of Arcs/Mother Theresas about, but a lot of very, very tired carers. Carers who are not only bone weary, but who are expected to have elastic, never-ending patience, which, let's face it, few, if any, have.

    In his pre-AD days, John freely admitted that he had little patience, and I dread to think what care he could have given me, had our roles been reversed. :eek: After John had gone to bed, I regularly soaked boxes of tissues, sobbing my heart out, feeling guilty if I'd allowed an exasperated sigh to escape, when John asked me for the zillionth time "is it Thursday today?", feeling sorry for myself, dreading the future etc etc.

    When we all got married, we had our parents, relations and friends' marriages as examples, and as the babies came along, again we had great, or not so great, examples of parenting.

    But where's the training for caring for someone who resembles the one you adored, but who has become someone completely different? The only place where I learned anything, was here on TP, posting when I needed advice, and giving it when someone mentioned a problem that I'd had with John.

    You're doing great sweetie, and keep posting on here, because though a cyber hug may not give you the solace of a physical one, you know that on TP, it's really sincere. :)
     
  13. Casbow

    Casbow Registered User

    Sep 3, 2013
    989
    Colchester
    I am so touched by all the people who wrote to me late last night and again this morning. You all made me cry because I know it was genuine understanding and empathy from people who are going through or have gone through the same things with this wicked illness.Thankyou for the poem Desiderata and the time it must have taken you to type it. I am feeling better today. Thankyou all so much and here is to a goodnights sleep for all. Hugs.xxxxxx
     
  14. elizabeth hc

    elizabeth hc Registered User

    Oct 31, 2012
    49
    The line in the poem Avoid aggressive persons they are a vexation of the spirit , jumped out at me ,if only I could! I don,t often comment but do read T.P so it is comforting that other people are in the same boat as me. I am lucky that O.H isn,t as bad as some but life can get difficult
     
  15. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    That's what I always found. And, unlike the Titanic, there are enough lovely rescuing people on TP, who will help you to survive. :) xxx
     
  16. mazowe

    mazowe Registered User

    May 2, 2015
    9
    I think I feel a lot of guilt too - and I am only at the early stages of having to deal with dementia or whatever of OH - as still no official diagnosis has been given. I finally got him to the doctors after some subterfuge and yes, they discovered he has the signs of short term memory loss. However, he will not let me help.

    Things are tense indoors here again. I have been quietly monitoring H's tablets for a week and I found that he was missing doses - -ver just one week, he missed three days for 3 of his tablets and for one of his others, he didn't take any over the week. But when I spoke to him about it, he said, he had been taking them. He just won't let me help - which is so frustrating. We haven't heard anything back from the doctors about the blood test results, so I am not sure what happens next- as H doesn't want me to help, I don't feel I can approach the doctor again.

    The other week, I was also trying to get him to start using the dishwasher again. He claimed he no longer used it as we had no tablets for it - and then discovered the new box we had, that I had said we had. We almost got to a full load and I went down in the morning to switch it on - to find he had taken everything out the night before and washed them all by hand. When I challenged him about it, he said we were running out of stuff - which was so untrue - and then he said, we had no tablets for it (again). I left it a few days and then suggested we try again. Guess what, we almost got it full again - and the same thing happened. Then he started moaning that he was getting chapped hands as he was continually having to do the washing up - and I again suggested the dishwasher. Two days supply went in - and then he emptied it again. I just give up! I really just don't know what to do.
     
  17. Alicenutter

    Alicenutter Registered User

    Aug 29, 2015
    560
    Massachusetts USA
    Oh mazowe I feel for you. My husband also has no formal diagnosis, although his GP here in the USA has prescribed Donepezil. He is refusing to take it because it is marked as being for dementia and 'there is nothing wrong with him'. In the meantime I'm out of the house a lot of the time because according to him I'm not his wife. Today he refused to let me take his wife's car so I ended up walking a couple of miles in a snowstorm... I'm getting a bit desperate here. How can I persuade him to talk to a neurologist and take the pills? He believes that I, the other women and the doctors are in a conspiracy against him.
     
  18. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    Regarding the taking of tablets, I found the dosset packs, provided by the chemist, invaluable. John had to take nearly 2 dozen a day (he had various illnesses), and the packs are divided into days of the week, and 4 times a day. The chemist put them in the right section, then I gave them to him.

    There are lies, white lies and Alzheimer's Lies. ;) If I wanted John to "see things my way", which didn't always work, for example, with the tablets in dosset packs, I resorted to Alzheimer's Lies, and said "the chemist/GP/consultant said that I have to give them to you", and made sure only I had access to them.

    It's so frightening in the early days, but you'll find that you adapt, and you'll get loads of help from the folk on TP. I couldn't have coped without them. :)
     
  19. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    1,598
    Liverpool
    Hi.

    My sorry you're having a really tough time mazowe. I think its really hard trying to help a PWD at the start, or at least it was with my mum as she didn't want to acknowledge the problem, so there wasn't one. I'm guessing its a common reaction, I'd probably feel the same way in that position.

    Sadly I think you have to do what's best for your hubby and contact his GP regardless of his reluctance. I think I would explain to the GP that you are still very concerned and that your husband doesn't want to go back to the surgery, but you are really worried. The GP could write "out of the blue"with and appointment, eg for a well man check up. Your husband needn't know you made contact with the GP, then the appointment isn't down to you.

    I had a real battle with my mum over medication. She hated me interfering, but it had to be done. I put mum's tablets in a weekly dispenser. Sadly I have to prompt her to take them now otherwise she wouldn't take any. If you think a weekly dispense is a non starter dosette boxes issued by the chemist might be the answer, you could maybe "sell" it as the new way they are dispensing tablets as it saves on packaging at least then it would be easier for you to keep track of what's being taken. Like I said I battled mum over this in the end I put the tablets out at the correct time with a glass of water and didn't say anything. No discussion equalled no argument. It took a few tense weeks, but she goes along with it now.

    I can't help much with the dishwasher other than to suggest putting the dishwasher on before he gets to the washing up bowl at least until he gets used to the idea that the dishwasher is back in use.
     
  20. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,923
    Yorkshire
    #20 Shedrech, Feb 10, 2016
    Last edited: Feb 10, 2016
    Hi mazowe
    I just wondered about the tablets - do they come in containers for each type of tablet or in a dosette pack where each day's, and time of day's, pills are placed in a blister bubble together? If the former, maybe have a word at the GP surgery and the pharmacy and ask if a dosette pack can be made up - then FIB to your OH and just tell him it's a new policy at the surgery to send out medication in this way. It may help him if he can see exactly which pills to take at which time each day.
    Ha - Scarlett123 & Lavender45 - great minds think alike and at the same time???
    I know it goes against the grain to 'go behind your OH's back' - sadly, though, it's often the only way to push things along - so please do keep his GP up to date with any of your concerns - the GP may not feel able to discuss anything with you but will note your worries (though I think more GPs are finding ways to communicate with carers without breaching patient/doctor confidentiality). There's no disloyalty, you are only acting in your OH's best interest, even if he isn't able to appreciate that.
    Sometimes it's worth not discussing things, just finding ways to help surreptitiously.
    And pick your battles - dad stopped using his dishwasher; he'd forgotten how to follow the process, but he happily hand washed as that's what he'd done most of his adult life, so I just left him to it (and rewashed some things when he wasn't around) - he felt useful and the task got done. Would your OH use hand cream when he's finished washing up?
     

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