1. lost child

    lost child Registered User

    May 25, 2006
    13
    kent
    I'm finding my dads illness harder and harder to cope with.He's been in an emi home for 1 1/2yrs and we have been able to take him out for walks and i've taken him to watch my son play football but suddenly last week his mobility has become terrible(he can just about walk a couple of metres) so when my son's and i visited we sat in the garden which was okay but not the same as walking on the beach.I dont mean to offend anyone but he shuffled like an old man and it breaks my heart to see him like this.Now this week he is having problems swallowing which i know can happen but i feel like this illness is taking my dad further and further away from me.I HATE this bloody illness and i know it will only get worse but right now i really dont know how much more i can cope with.I have to be strong for my mum but i cant be strong for myself.It is literally tearing me apart i feel like an emotional wreck and the worse thing is i know it wont get any better(i know there are alot of people out there who are in worse situations so i apoligise for maybe over reacting).I really dont know how much more i can take.Why cant i just accept that this is the way it is and get on with it?
     
  2. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dear lost child, accepting is hard. Probably one of the hardest things to do but, if you cannot change your dear dads condition, please try to make the best of each day.

    I do know how hard it is to watch someone turn into an old man before their time, but hey, you got to sit in the garden with him...........please try to count your blessings. Life will not get easier, so treasure today.

    Who knows what tomorrow may bring......for any of us. As dear Norman says
    "day by day". Thinking of you, and sending you a hug.
     

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  3. Kayla

    Kayla Registered User

    May 14, 2006
    621
    Kent
    I can't cope any more

    When my Mum broke her hip and was stuck in hospital for nearly four weeks, it seemed like the end of the world. Her Care Home couldn't cope with her needs, which involved a considerable amount of nursing. She couldn't even hold a cup or feed herself, and she kept slipping down and off her chair. The NH helped her a great deal and she soon looked a lot better and was eating independently again. Although Mum is now in a wheelchair and cannot even stand for a few minutes, she is still able to hold a rather strange conversation and she has made a new friend.
    The only way I can cope is to try and focus on the positve things and I would be delighted if Mum could just take her own weight for a few minutes. If she could, we could perhaps get her into the car and take her out. At the moment she would need a taxi so she could go in her wheelchair. I would worry that the special taxi might take her out somewhere, and then be unavailable to bring her back. Also, she needs a hoist to get her out of the wheelchair, because she has painful rheumatoid arthritis and osteoporosis, which makes her very fragile.
    For me, it would be a very positive thing, to be able to bring Mum home to see the garden and animals, or to take her out somewhere in the car. If she could shuffle along for a few metres, then that would be a real bonus!
    I suppose we are lucky that Mum can still talk and remember some things in the past, but it would be good if she was just a little bit mobile too!
    Kayla
     
  4. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    Hi lost child
    I can't offer much help and I know its so very hard.......its a vicious and cruel illness....
    sending you love and big hugs
    Wendy
    xx
     
  5. daughter

    daughter Registered User

    Mar 16, 2005
    824
    No tears for a clown

    Hi lost child, I do feel for you. My Dad has been in an EMI unit for about the same time as yours. He is 83 - some might say he's had a good innings, but he's still my Dad and I feel I can't make him smile any more. He's always been such a happy man, making everyone else smile. I'm meant to be brave for my Mum too. I just can't do it either - my way has been to switch off and I'm sure that's not healthy, but I just can't cry any more. Even writing this I'm just numb - and of course that looks like I don't care.

    When I visit Dad now I feel like I'm putting on a clown's make up to smile through all that pain - and if I can mask it off from the world, then perhaps I won't feel it either. Of course, when Dad does give a small smile it makes it all worthwhile, but seeing him glum most of the time - and knowing Mum feels the same too, it just all gets too hard to bear. :(

    To top it all, just as the visiting seems to be getting harder than ever, my Mum has picked up on this and is contriving to visit Dad on the days that I'm working, so that I won't be "bored". I know she's probably only thinking of me but despite all my moans, and sounding like a ten year old child, I still want to see my Dad. Then when I say I might visit Dad on my day off anyway, Mum will say no don't do that because it's better for her if I go when she's there. Argh! No wonder I feel so mixed up. How on earth do I do the 'right' thing for all of us?! :confused: :eek:

    Sorry this is not really helping but I don't think it is something we can ever really accept, we just have to try and live with it and, as Connie says, try to make the best of the good parts. You're not over-reacting and you're also not alone in hating this illness. {{hugs}}
     
  6. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Hazel and Lost Child,
    Hazel, you can never do the right thing for "all of us", because you all have conflicting needs, all any of us can do is our best.
    I think I too have learned to switch off - mum's dementia, dad's pain and loneliness, that is part of their journey through life. I can try and help, be there for both of them, but only in the context of the other people in my life. I cannot stop the dementia, I cannot take away the pain, but I can let them both know that they are not alone and that they are loved.
    Day by day Lost Child, you will be OK.
    With love,
    Helen
     
  7. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Dear Lost Child,

    I know the feeling, of not being able to cope. Thought you might like to know that..that you're not weak, not the weird one, not the one over-dramatising things, this is bloody hard, its miserable, yours/my heart aches for your/my father. You just want him back, you just want this to all be over. This wasn't supposed to happen to your big strong independent dad. Its like you've had one of the strongest things in your life, your rock, smashed to pieces in front of you...u just want to fall to the ground, picking up the pieces in your hands, feeling them crumble into rubble as you do so, and cry and cry and cry.

    But life doesn't work that way anymore..this might be happening to your Daddy, but even though that makes you feel like a lonely 'lost child' again...we're adults now and that means for good or for bad we have to keep going, if its not for our mum's its for our partner's or our children...or even our sick fathers, so that they still have something they can rely upon. I'm not preaching here...like you I don't how I am going to manage to do so...all I do know is that the days keep passing and I am still here...even if some days it is only just. Some days, I have an absolute fit and do spend it 'not coping'...but even when you do get to cry and not cope..I have found that the pain doesn't go away, in fact when I am not coping, I get more time to think about how miserable things are, and that just makes me feel worse, so I have found instead that it works better for me to just pretend I am able to cope, keep going to work, keep being a wife, keep being a step-mum, keep being a daughter, keep busy...and time passes much quicker. But allow yourself to chuck a wobbly every now and again!

    The biggest suck about this disease is that even if you don't cope..the situation remains...and remains possibly for years. There is no escape except the unspeakable and frankly if this disease has taught me one thing it is to cherish life while we have it and can enjoy it. That doesn't mean I wasn't thinking very dark thoughts the other night...the thing is though, you just have to give things time. I can be ready to not want to live anymore one night...but three days later I will be fine again, something nice will happen, I will see something beautiful, I will realise how lucky I am to have the husband I do, something will bring me out of my dark mood. Sometimes it might be 3 weeks or 3 months, but something will make life worth it for me again. Even Dad smiling in delight to see me, although it hurts as much as it makes me happy, it reminds me that he would have wanted me to be enjoying life, that he wouldn't have wanted me this sad...and so I keep coping for his sake...so I can be happy again one day in the future for his sake.

    I don't know what else I can say, except to reiterate again that I know how you feel, and that you shouldn't feel like there's something wrong with you for not being able to get past this. I almost said exactly the same words that you have written here to my husband the other day...why can't I get past this, accept it...I think we just have to accept that...we can't.

    I have been away recently for work and it also made me realise how easy it is to forget, to cope , to accept when you are far away from it all. Made me realise that part of why we can't get over our grief like other people do when their loved ones die is because our loved ones are still here, near us....the mind is wonderful at blocking pain out when it doesn't have to deal with the situation causing it on a day to day basis...but we don't get that luxury...or if we do, our loved ones get forgotten and die alone. Thats why we who don't want that fate for our loved ones, somehow manage to keep coping.

    When you are feeling like you can't take anymore, just keep saying to yourself my favourite saying for such times...'this too in time will pass, this too in time will pass'. It is amazing how much better it makes me feel to say that. I guess it reminds you that there is hope of better times, in time.

    All the best, another 'lost child',
     
  8. linda a

    linda a Registered User

    Jun 13, 2006
    48
    suffolk
    So Very Sad

    YOU are so right, this is so cruel im not angry today but my daughter is she is so mad its awfull shes not here now she gone out, but its been its not fair its my dad its my dad i want my dad back,
    so your words HIT HOME yes some tears,imgoing to make him a coffee god its not his fault,and i want my husband back im so lonley,
     
  9. Libby

    Libby Registered User

    May 20, 2006
    625
    North East
    I think most people must go through a stage of thinking "I can't cope anymore". I know I did. My mum used to be such a strong person - she would have big family get togethers and to see her now - really breaks my heart at times. But you do have to take things day by day - I try not to look too far into the future because I don't know which makes me feel worse - years of this or Mum passing away.

    You're certainly not over reacting - everyone deals with things in different ways - I don't think theres a right way or wrong way. Some people are strong in some ways - some in others.

    Maybe you need to take some time out for yourself and give yourself a break away from the AD - I've done that a couple of times - Mum's been none the wiser, and it's given me chance to get my strength back

    Libs
     
  10. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    How many times have I thought I cannot cope?
    I try,in the middle of these desperate times to think this will not last,it will get better,it may be today it may be tomorrow,but it will get better.
    It has worked so far and I am still here,caring and struggling through the bad times,waiting for the good.
    I too want my darling wife back,I am lonely but I am grateful for her fleeting visits to me,and dreading the time when she comes no more.

    Norman
     
  11. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Big hugs Norman, know exactly where you are. Much love,
     
  12. lost child

    lost child Registered User

    May 25, 2006
    13
    kent
    Thankyou all for such kind words and advice and support,it brought tears to my eyes reading the replies.I have to keep telling myself to make the most of the good days but as you all know its really hard.I have days where im quite positive and think "right this is how it is so enjoy the time i have with dad while i can and while he still smiles at me and kisses me".Then another day i will basically be an emotional wreck and cry nonstop.I have a wonderful supportive husband and i sometimes think he must get sick of me going over the same things(i know he doesnt though).You are all so kind and caring.Since joining tp i feel it has really helped me as i said on another forum i dont feel so alone anymore.Thankyou again.
    Lost Child xxxx
     
  13. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Twins :eek:P

    Another similarity between us:
    God don't I know THAT feeling!
     
  14. lost child

    lost child Registered User

    May 25, 2006
    13
    kent
    Dear Nat,
    How strange how similar we are.So many things you said in your previous reply are the same as me.I read your reply and thought "Thats exactly how i feel about losing my dad and about how i hate this horrible illness".Its so nice to find someone else of a similar age to me who's going through exactly the same as me(obviously i wish we weren't going through this and no disrespect to any other age group) but i've only ever met(in person)people over 60+(apart from my sister and brothers who are all older than me).So it's actually really nice to find someone whose similar to myself and you give really good advice thanks.
    Lost Child xxxx P.S yes your saying does work.
     
  15. cole

    cole Registered User

    Hi lost child, just logged onto this site for the first time in months and whilst reading your post lots of memories came back to me. I am 36 and my mum took the disease at the early age of 45. She is still with us at the age of 65 and i am very proud to say that she is still being looked after at our family home by myself and 4 brothers and sisters. My mum has gone trhough the stages of the disease, and for the last five years she has been confined to bed, needing to be turned and changed every 3 hours, peg-tube fed, chest infections at regular intervals and a list of other ailments aswell. All traces of her personality or any personality
    have long since gone.
    There have been many times over the years, where personaly I too thought I could not cope, the different stages come and as you get used to that stage,all of a sudden you realise that stage is gone and you have to get used to a new one again.It is so hard deal with and so sad for both the carer but in hindsight the person with the disease aswell. All I can say, is to talk to anyone who is willing to listen and tell them how you are feeling, and try to accept that changes are coming and that saddly its a downward slope that we have no power over. Whatever time we have left with mum as she is at the end stage, we try to still see the person she used to be, and that is how we get by.
     
  16. lost child

    lost child Registered User

    May 25, 2006
    13
    kent
    Dear Cole,How i admire you and your family looking after your mum at home.I wish we could've kept dad at home with mum,but it just wasn't possible.He had become a danger to himself and mum and although i only live 2 minutes away i was ill at the time and had 2 young boys and a husband who worked shift work.I also didnt have the support from my 2 brothers and sister(they all live over 2 hours drive away)Thankyou for the advice.I know there are rougher times ahead and i have to make the most of now,but as you know somedays its so bloody hard.At the end of the day i want my old dad back but i know it will never happen.How do you cope with your mum being in the end stages? I am terrified of that time coming.Lost Child xxxx
     

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