1. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Monthly visit today - I was told I looked much better, I had just had 12 days to myself while Lionel was in respite..............I was actually quite fraught, after a very difficult day yesterday and a very bad night.

    Lionel was not his usual self, and admitted to being quite down. "Do you want to take this further, and request to see the consultant" was the response.
    "What have you got planned for the immediate future, as I know you try to keep a full calender" was the next question.

    I can see the deteriation in Lionel, why can no one else acknowledge this.
    2 years ago he walked to the Rememberance Day parade alone, last year we went together, and went for a coffee afterwards. Yesterday I took him in the wheelchair.

    I still take him to the concerts etc that we have always done, and do try to have something booked in advance on the calender, but this is me, not Lionel.
    He is only as good as I keep him. I don't want praise, I just need someone to look at the real man. (Maybe I do too good a job) Connie
     
  2. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    #2 jc141265, Nov 15, 2005
    Last edited: Nov 15, 2005
    See the man

    Connie,

    No doubt you do,... do too good a job, you are a wonderful person. I thought I'd just write to say I needed to read your post and hopefully mine will help you too. Even though Dad is well past Lionel's stage and we no longer have the strain of 24hr care, I found myself almost hysterical last night and have been very bad and taken a sick day from work today for I just felt I couldn't cope dealing with all the 'normal' people. The 'normal' people who seem to have no clue that Dad's situation is absolutely ripping me apart emotionally, the normal people who don't seem to notice that Dad is a human being who is being destroyed right in front of me, I'm sure he could have an arm drop off and everybody would just shrug their shoulders! They are not even aware of how I am teetering on the brink of a chasm, barely able to continue to look like the rest of the 'normal' people. I just want to sit down, not go to work and wail about Dad, I want people to see how he is declining and I want them to recognise and acknowledge the human tragedy that is occurring right in front of them.

    I sit there thinking what is wrong with me, why does everyone else think I should be unphased by the destruction I am seeing?? Even my other family members think I am strange and I would think perhaps its all in my head or I am over dramatising the situation if it wasn't for the fact that tears pour out of me and I don't do anything consciously to bring them on, I'm not even really in touch with why they come. I guess I just want someone else to have the energy (not everyday, but just every now and then) to look like they want to try to help Dad, I know rationally we should just give up on him, and thats what everyone else has done, but he's still here, he's still wanting to live, he still has hope. How can I take that away from him and be like all the rest, but how can I keep doing this alone, with no understanding from anyone else?

    Even hubby-to-be copped it last night, because as wonderful as he is, he wants me to deal with this alone, no one wants to come near this situation with a ten foot barge pole and if you dare whine about it, then you must be losing it. I wouldn't be 'losing it' if someone else would be here with me! And when they all think I am coping so well don't they realise that I am faking it and the very strain of having to fake it, just brings me closer to the edge?

    I suspect I have taken your words a little out of context, but it was like seeing me two years ago, so I feel like that maybe these same feelings are brewing for you as well. Apologies if I have read you wrong. If I have Connie dear, please know I do know this feeling of yours
    I want to scream that out, so badly about Dad too. LOOK AT HIM!!!

    And at times I am also angry at myself for coping so well, when i got a call last year that Dad had had a seizure stopped breathing and was in hospital, I rang work to tell them I had to not come in that day...and do you know I had to have a polite discussion of whether I thought I might be able to come in later on once I had checked on him and whether they really thought it was appropriate for me to miss work????? It was my own fault in a way because I for some reason am unable to show my distress without going over the top and making people think I have lost it. Twixt a rock and a hard place again, I either look like everything is fine, or I cause people to think I can't cope and that I am no longer a reliable employee, someone who needs to see a mental health expert themselves...when I know I can cope, I just should be allowed to be a mess sometimes and I wouldn't have to be a mess so often if other people would just SEE THE MAN!

    Last but not least, I wish people would realise it is completely NORMAL to be this upset and that one can cope and be this upset. One can't cope however when the rest of the world stresses you out even more for daring to look like you are upset. Let me be upset, even if you don't want to acknowledge what is happening to this man, I can and will for everyone else and then I can move on and keep being productive, if you just recognise what I am going through. Again its not praise I want, I just want to be allowed to see the man that no one else can be bothered with, I can't do that and be cheery, happy, and delightful all of the time!
     
  3. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Connie, it is so hard isn't it, this continuous downward spiral, like water going down the plughole without a plug we can jam in. The rest of the world keeps turning but for us the water/essence of our lives is draining away from us as we see our loved ones disappearing into that abyss. The transition into a wheelchair is a big one and no doubt it hurt you greatly, but at least you are still getting out and doing things together, you are still fighting this disease, you are still getting the best you possibly can out of the life you have with Lionel and the credit is all yours. You are the one in the driving seat, the one with the courage and love to keep on going in spite of it all. You are a very special person Connie, it takes a heck of a lot of courage to care for someone with dementia the way you do, well done. If the powers that be seem to just take what you do for granted, well, you have many friends here on TP who know just how you are feeling and how the little things that no longer happen can bring you to tears. I hope tomorrow is better for both of you, Lionel is a lucky man to have a wife like you. With much love and hugs, She. XX
     
  4. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Connie and Nat,

    I think that we get so involved with holding back the tides of dementia for our loved one - and in doing that can be successful up to a point - that anyone seeing us and them for a short period may really not pick up on what are quite major changes. Even if we tell them.

    We make it worse by not wanting to show our wife/husband/father/etc in anything other than the best light, and in needing to hold ourselves together as well. If they go, we go, sort of thing.

    This first came home to me when my Mum and younger brother drove two hours to see Jan while she was still in her assessment hospital, after her fall.

    I had made myself strong by just accepting what had happened [the fall] and in adjusting to it and Jan's new needs. This meant that, in a padded room, we both crawled around each visit , and we still had some real conversation, then.

    Anyway, they visited and all they could do was sit at the door and watch us. The previous time they had seen Jan was four months earlier on my birthday, when she could walk in our garden on a lovely sunny day, though on looking back at my photographs, she was quite bad, even then. [at that point I had only another month of her company at home - though I didn't know it at the time :mad: ] .

    After the visit, and when they had returned home safely, we spoke on the phone. Mum said they had both been shaking all the way back, absolutely speechless, totally unaware of what I had been handling, and of Jan's dire condition.

    Probably my fault in not shouting more, but in reality, what could they have done anyway?

    How can anyone appreciate all this? The professionals should be trained to understand and see behind behaviours of course, but it makes their lives so much easier to ignore things - and it costs them less as well, in all ways.

    Hang on in there!
     
  5. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    Dear Connie

    Sometimes people's comments can leave you feeling very down. Even when they don't mean to. I had a CPN whom had the sensitivity of a sledge hammer, she always left me in bits and I would pick apart and analize her comments for weeks on end, huge case of anxiety disorder on my part too and I believe all carers suffer from this to some extent, anxiety has always been my worse enemy.

    Like everyone else here, I think you are blooming wonderful, and yes I'm sure you do far too good a job with Lionel, but that's because you're that kind of person, only the best will do with regards your care. It's so hard to face up to each physical failing that comes along C, it will always bring you depression and fear. Wish I could say something to make you feel better, but of course there are no words with this illness that help the carer. Just know how valued you are here and that we're all behind you.
     
  6. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    Connie, it is such a nightmare!! Hang on to every little good bit you can, and make the most of it. This is a case of 'don't look back', if only to avoid being reminded of how good things once were (even in those times when we thought they were bad - if that makes sense ....). Sadly, we don't dare looking ahead, either, since that is even more scary.

    Sorry, I didn't mean to make you feel worse, but I do know how you feel. We are all our worst enemies when we put on this grand show to make everyone see our loved ones (and ourselves, in our pride) at their best. I find it impossible to tell anyone just how ghastly it is to witness the hallucinations, to deal with the incontinence, to watch the fear in my husband's eyes and hear him crying, to not be able to communicate or find out how I could make him more comfortable - I could go on, but it is not until I am absolutely desperate for an occupational therapy assessment or a doctor's appointment that I tell 'them' what it's really like, and when I do, I feel as though I was betraying my proud and once so independent man. Arrrgh.

    Whinge over - tomorrow may be better. Best wishes!
     
  7. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    OK, communal hug needed I think, 1 2 3, HHHHUUUUUUUUUUGGGGGGGG!! :)
    thank goodness we can all feel for each other in this. Much love, She. XX
     
  8. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Thanks all, loved the hug. Nan, that was not a whinge, just a message of support and some common sense thinking.
    Here's to a better day tomorrow for all. Connie
     
  9. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Dear Connie
    so sorry to hear that you are still having a bad time,please let it improve soon.
    Only the ones concerned with the caring can understand what is all about,the mood swings, the loneliness,no social side to life anymore.
    The desperation that builds up inside until you could scream out to the world about the injustices that have befallen you.
    I had a shock whan I saw the tv film,I had not realised how much Peg deteriorated recently.
    We didn't get to the rememberance service this year,last year we went on parade and to church.
    I now have got some bug or a cold on the way ,so life is wonderful at the moment .
    What would I do without my TP family
    Norman
     

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