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Today is "stop feeling guilty" day!

Discussion in 'I have a partner with dementia' started by Scarlett123, Sep 2, 2015.

  1. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    I've read so many posts on here that contain the word "guilty", and there's currently 2 threads with this word in the title. There is only so much that a carer can do, especially if they don't have a large loving, willing and available support network of friends and family. In so many cases, it's the spouse, and just the spouse (or partner).

    Many of us on here are pensioners, without the energy of our 20s, 30s or 40s. Those that aren't, may well have dependant children to care for as well. People write that they feel guilty because they're tired of answering the same question, tired of cleaning up after their spouse, tired of the grind of night and day, tired of the lack of sleep, tired of their own work-horse "retirement", which bears no resemblance to the happy, carefree time they envisaged.

    I know we made our vows decades ago, for better or worse, in sickness and in health etc. But where did Alzheimer's figure in all this? Man Flu hadn't been invented in the 1960s, but when I vowed to love John "in sickness and in health", the "sickness" bit suggested that I might, occasionally, lay a cool hand on his fevered brow, gently smile and that he would grasp my hand, and look tenderly into my eyes, whispering "what would I do without you, my love"? :D

    There was never any suggestion that I would find myself living with a stranger, who would be violent, doubly incontinent, either volatile or completely silent, blame everything on me, reduce me to tears, ask "is it Thursday" every 20 seconds, and deprive me of sleep.

    That they would forget who I was, set fire to the kitchen, wander off, have to accompany me to the loo, because I couldn't leave him for a second, and have a glazed, bewildered look in their eyes, when I tried to make conversation. Yes, I too used to feel "guilty", but looking back, I reckon I was a saint!

    And so are all of you. :) So, just for one day, please try not to feel guilty, you lovely carers.

    AN ODE TO CARERS

    It's a hell of a load that you carry
    It's a hell of a road that you walk
    When that person you hungered to marry
    Is a stranger, unable to talk

    Or they shout or berate you - for nothing
    Or a blank look is filling their eyes
    Oh where is the person you loved for so long
    Cos this one you can't recognise

    Every day there's a battle to conquer
    Though you're weary and worn to the bone
    You struggle and weep, and long for some sleep
    But instead, you must trudge on alone

    So just for a day - don't feel guilty
    As you feed, clean, or help them get dressed
    I hope you'll agree, cos here on TP
    Dear Carers - YOU'RE SIMPLY THE BEST!!!!!!

    :) :) :) :) :) :)
     
  2. jikkie

    jikkie Registered User

    Aug 23, 2015
    64
    I cannot say I am anywhere near this stage - yet.

    And I feel guilty already. I read all these posts in the "I have a partner" section, and everyone does so much... Personally, every day I already dream of being free...

    One thing I particularly dislike is that I find the things that are said and done or not done by OH are exacerbations of things I never did like about him, even donkey's years ago. So I find myself actively disliking him. Put it this way, if he wasnt 81 and me 63... I would be off like a shot. How awful is that....

    Against that backdrop I find it hard to see myself coping with all the stuff so many people do.

    So I don't just feel guilty, I also feel that I am a "bad person" too.
     
  3. LYN T

    LYN T Registered User

    Aug 30, 2012
    6,968
    Brixham Devon
    Aw! Thank you dear Scarlett. I'm going to do my very best to make the rest of the day guilt free! I've been plagued by guilty feelings from last night through to this morning so it's going to have to be a 'try to be guilt free' half day for me.:)

    What's been playing on my mind recently is that once when we were talking about Pete's Mum (also young onset with AD) I told him that if he ever 'got it' I wouldn't put him in a CH-which is what happened to his Mum.

    I never met Pete's Mum or Dad (also Dementia) but he told me about it. I thought 'how hard can it be to keep someone at home? Surely it's not too bad?:eek::eek:) So although I heard about some of the symptoms I didn't KNOW. Doesn't make the guilt go away-but I'm going to try.

    Thank you Dear friend

    Love

    Lyn T XX
     
  4. LYN T

    LYN T Registered User

    Aug 30, 2012
    6,968
    Brixham Devon
    Change 'bad person' to 'honest person'.

    Nearly everyone reaches a point where they can't cope anymore; some can't deal with the physical things like lifting/supporting; others incontinence-I'm afraid my bugbear was lack of sleep. My late OH was diagnosed with bi-polar at the same time as AD so when he was in manic mode he could be awake for a long, long time. That's what got me.

    Go easy on yourself. You're still there, still caring and if your OH has to be cared for in a CH I bet you will visit and care for him wherever he is.

    Take care

    Lyn T XX
     
  5. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,659
    North West
    Well you clearly aren't a 'bad person' otherwise you would have given up already. I think those people who continue to care in circumstances such as you describe, circumstances that appear to be not uncommon, must be very good people. Caring is never easy and we all wish life could different but in some ways caring for someone you love very deeply and could never think of abandoning is rewarding. And I realise that some, perhaps many, people will find that hard to understand.

    So no guilt and no underestimating what you do please.:)
     
  6. sleepless

    sleepless Registered User

    Feb 19, 2010
    3,232
    Female
    The Sweet North
    And check out Stanleypj's signature phrase -

    'There is no 'they' - everyone is different.'

    This goes for carers as well as cared for.
     
  7. marionq

    marionq Registered User

    Apr 24, 2013
    5,860
    Female
    Scotland
    First - I love the Ode, Scarlett. Spot on! I feel guilty and disgusted with myself when I lose my rag - have t done that recently because I have been having some help from my daughter. This tells me that losing it is what I do when I am exhausted, frustrated, worn out. I have never sacrificed so much in any job however well paid.

    I will do my best not to feel guilt because it's not rational when you are trying all the time to do your best. Jikkie like you I find myself noticing that irritating behaviours which I ignored when madly in love are no longer masked and are just downright annoying.

    This is one illness I had no preparation for since although it is common in John's family no one in mine had it until all sorts of in laws and relatives of friends started to develop symptoms. Measles it is not!
     
  8. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    8,007
    Norfolk
    Oh boy, can I relate to your feelings on here, Jikkie and Marionq. When I worked in a couple of nursing homes, I saw dementia, but didn't know what it was at the time. Living with it turned me into a monster. Angry, scowling, muttering, boiling stewpot. I hated being like that. Living alone as I do has changed me so much. I don't carry resentment about any more, or the feeling that I'm worth less than dirt. It's gone, now. I do have more strength to fight what I need to without getting in a stripe over it, well...so far!

    Love your honesty, and Scarlett, your Ode is, as always, wonderful.
     
  9. Grey Lad

    Grey Lad Registered User

    Sep 12, 2014
    5,737
    North East Lincs
    Scarlett thank you so much for opening this thread. Your Ode leaves me struggling for superlatives. Always glad to read your posts. G L
     
  10. truth24

    truth24 Registered User

    Oct 13, 2013
    5,726
    North Somerset
    Dear Scarlett. You always know how to put things into words. Must admit that memory has been kind to me and put all those horrendous times to the back of my mInd. I actually have to read back through those posts to remember just how bad it was. My sense of guilt has lessened considerably now that Fred is contented in his CH but am still aware that I was pretty horrible to him on occasions when things got too much. So thank you for your ode. You were a great support to me at the time and I hope I can now support others travelling the same path. Love to you. Verityxx
     
  11. 2jays

    2jays Registered User

    Jun 4, 2010
    11,604
    West Midlands
    Brilliant ode :)

    Those vows, In sickness and in health... I dont think they mean YOU have to be the ONLY one who looks after the person in their sickness....

    To me It means, I vow to ensure that in their sickness, I will ensure that the correct care is given by others if needed....

    xx


    Sent from my iPhone using Talking Point
     
  12. nannylondon

    nannylondon Registered User

    Apr 7, 2014
    2,476
    London
    Thanks Scarlet you have a great way with words I am going to.print your ode out and read it when that old monster called guilt comes so thanks again xxx
     
  13. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    7,963
    North East England
    Words of wisdom as always dear Scarlett..:)



    These are the standard traditional vows which most of us married people say as part of our ceremony of matrimony. Those who enter a civil partnership may well say something similar....and again others may use a different form but the meaning is clear......
    ............. we promise to do our utmost to care for our spouse to the best of our abilities for as long as we are together.
    Two Jays got it right, in my opinion....
    At no point does it say that we have to do this alone, to the detriment of our own mental or physical health. Loving, caring and cherishing are all parts of normal married life and it is equally normal to love, cherish or care for one's spouse by seeking external assistance.
    Guilt is an emotion which can only be validated if you fail to try your best deliberately. If you try your best and still are unable to manage alone, how can it be failure to seek help from someone who has the skill to provide what you cannot.
     
  14. gringo

    gringo Registered User

    Feb 1, 2012
    1,189
    UK.
    I too appreciated your Ode.
    My wife once said to me “who has got power over me to say where I am?”. Guilt isn’t to be waved away easily. Not too long ago this wrote itself for me :-

    We’ve lived apart
    Since my head ruled my heart.
    And now I have to live with the guilt.

    When you are brought
    Before your conscience’s court,
    You are judged by a biased accuser.

    Guilt wears you down.
    Guilt bears you down.
    Guilt’s like a heavy load strapped to your back.

    It takes you to Hell.
    I know the road well.
    It’s paved with the best of intentions.

    Guilt is quite irrational and no amount of telling yourself how well you’ve done cuts much ice at 2 o’clock in the morning.
     
  15. patsy56

    patsy56 Registered User

    Jan 14, 2015
    840
    Fife Scotland
    wonderful way to say it.
     
  16. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    8,007
    Norfolk
    Oh, well said, Gringo!
     
  17. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    Oh thank you, she says, trying to look modest. ;) I just hope that some of you have managed to feel a little less guilty today, even if the day hasn't been guilt-free. Jikkie, you are not a bad person. You are a normal human being, who has found herself in a role, she never ever thought, in a million years, would be hers.

    I've said on another thread that I was ready to murder the next person who would say to me "but he looks so well!" as if a clean shirt, or shaved face meant he couldn't possibly have Alzheimer's. :mad: And I would imagine the worst possible torture for those "friends", to whom I would relate John's maddening ways, and they would say "yes, but it's not him, it's the illness". :mad::mad::mad: Of course, I hadn't thought of that, had I. Arghhhhh!!!

    I had lunch with a friend today, and was mentally whipping myself, because I found myself comparing my situation to hers, and envying her. :eek: She was widowed a few years ago, whilst on holiday with her husband, who had a massive heart attack. And when she was recalling the event and her shock, I thought "but at least you had a normal marriage, right till the end". True, but not a kind thought. She mourns her husband just a much as I mourn mine.

    And the problem is that we're all too close to the situation. When I was a teacher, I could deal far easier with dozens of moody teenagers, than I could with my own 2 -cos I was their Mum! That's why it's imperative to get as much help as you possibly can, because outsiders don't have the emotional connection that we have.
     
  18. patsy56

    patsy56 Registered User

    Jan 14, 2015
    840
    Fife Scotland
    you are not a bad person, , like you, OH (B) and me are 17yrs (59+76) difference but I have now reconciled myself we had good times and now I have to make sure he still has good times. (B has Parkinson's ) so still a struggle, 'spech with eating washing etc.

    But Jikkie if you need to chat PM me I'll support.
     
  19. Beannie

    Beannie Registered User

    Aug 17, 2015
    94
    East Midlands
    This has totally lifted my spirits so thank you thank you thank you!!!

    The ode is amazing. It has absolutely made my evening (or what's left of it at 23.51!!!). You are absolutely right I will try my best everyday not to use the word guilty and someone give me a nudge if I use the word again in any post. So goodnight fellow TP's.
     
  20. lizzybean

    lizzybean Registered User

    Feb 3, 2014
    1,398
    Lancashire
    Scarlett, I am nowhere near this stage yet & it is my MIL I care for but you moved me to tears. I feel a lot of guilt as does my husband but we try our best, all the time. We feel we should do more but we need a life too, that alone makes me feel guilty, just saying it.
    I shall also print it out & hang somewhere prominent.
     

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