1. Danbar

    Danbar Registered User

    Jul 26, 2015
    I am new to talking point and I am pleased to say that I am finding the responses to the two posts that I have made very useful, and my thanks go to the people who have responded.

    One of the areas that does not appear to be talked about too much is the emotional hurt that one feels watching the person you love disintegrate before your very eyes whilst they travel on their Alzheimer's journey.
    Everyone involved in providing support for carers always says that the carer needs to take time out from caring in order to recharge their batteries and I fully understand the need to do this. However I find that I am able to cope with all the extra physical work that being a full time carer requires what I have difficulty with is coping with the emotional impact when I see my life long partner, we met when we were 13, slowly being lost to me.

    At times she does not know who I am or that we are married. Our relationship is now so different with my partner being totally reliant on my support, which I am only to keen to give, but it is now such a one sided partnership.

    I find it very distressing to find her struggling with basic things and knowing that each day she appears to be slipping further away from me.

    I am sure it is the same for everyone and the only way to cope is to concentrate on the NOW and try not to think to far ahead.
  2. lesley1958

    lesley1958 Registered User

    Mar 24, 2015
    My Dad frequently is absolutely definite that my mum is not his wife, that he has never been married, etc (61 years now). We both try to take comfort from the fact that even when he is in this condition - absoluetely positive that they are not married, uncertain who she is - he still turns to her for comfort and reassurance. She remains his touchstone. Whoever he thinks she is at these times, she is at least someone who is important to him, whom he trusts and who he knows cares for him. Sometimes he talks of her as his "friend" at these times.

    Other posters on here have said that the emotions remain even if the understanding of the actual relationship has gone and I think that's what I am trying to say. Philip Larkin said it better and I often think of this line from one of his poems: “What will survive of us is love". It doesn't stop the hurt. It doesn't take away the pain. But it's a comfort to me.

    Thinking of you and wishing you strength

  3. LYN T

    LYN T Registered User

    Aug 30, 2012
    Brixham Devon
    Yes the emotional impact is huge-it hurts and it can bring us to our knees. To see someone you love suffer and be totally confused is a situation I wouldn't wish on anyone.

    But I have to disagree when you say that emotional issues are not tackled here. I lost my Husband just leading up to Xmas last year and the support I received was second to none. There was always someone to make contact with, someone who had knowledge of my feelings, and someone to lead a guiding hand. I joined this Forum two years before Pete passed and I so wish I had joined earlier-by the time I did Pete was already moderate/low severe-so I should have done. I was supported from day one-many of my reasons for posting was due to the emotional difficulties I was having. I'm afraid to say I took more than I gave-but there was no judgment.

    Last December was a horrible time-not only for me as during Dec/Jan four other Husbands passed away-there have been many more since-and Parents and other relatives. Before and after the death of a loved one there is sorrow and tears but there is support and friendship-I really don't know how I would have coped without both.

    I hope you find this Forum helpful-you can offload here and always get help and understanding.

    Take care

    Lyn T XX
  4. mrs mcgonnagal

    mrs mcgonnagal Registered User

    May 9, 2015
    I think it is right to say that it is the emotional impact of caring for someone who has dementia that is the reason this forum is so popular. Here you can find people in the same situation, feel a little less alone, pick up tips and ways of coping with difficult times. I regularly read others posts, occasionally write myself but sometimes just knowing there are others out there is good. I am not exaggerating when I say its been a life saver for me over the last difficult 10 months. Thanks to all!
  5. Patricia Alice

    Patricia Alice Registered User

    Mar 2, 2015
    I only joined this year and it has been invaluable to my sanity.

    I post when I am at my lowest ebb or if I feel I have something to add to someone in a similar position to me then I post what I am going through.

    The advice and caring shown to me makes me feel less alone, that others are going through the same, if not worse, than my journey with my mum at times.

    We are all here for the same reasons, this terribly cruel disease that has and is robbing us of our loved ones.

    We are always here for you.

  6. nannylondon

    nannylondon Registered User

    Apr 7, 2014
    I agree with others who have posted people do talk about the emotional impact this horrible illness has on carers I wish I had found this forum years ago it has been a godsend during a very difficult period just hearing others are in a similar situation helps me because I don't feel so alone hope you find the support that I have x
  7. Jinx

    Jinx Registered User

    Mar 13, 2014
    As I see it one of the coping mechanism's is not to dwell on the emotional impact because when you let that side of it creep in you're liable to turn into a blubbering wreck and coping goes out the window. Nevertheless over the time I have been on TP all sorts of emotional issues have been discussed, advice and support given and people have been supported through all sorts of life changing events involving a range of emotions. xxxxx

    Sent from my iPad using Talking Point
  8. gringo

    gringo Registered User

    Feb 1, 2012
    Hello Danbar,
    You could only make this comment if you had not visited the poetry section! There, emotional hurt is pretty well the only subject!! It is the least visited section of this forum.
    Like you, I face each day knowing that it will show me another small deterioration in my wife’s condition, and I am only too aware this process will never stop. I have found that the only way I can deal with my demons is to twist my thoughts into verse. They are mainly written because they provide me with catharsis. However, I post them from time to time, even though I realise they will be read by very few. But I feel if only one person reads and gains some comfort from knowing how exactly his/her distress is shared, then it has been worthwhile.
  9. Saffie

    Saffie Registered User

    Mar 26, 2011
    Near Southampton
    #9 Saffie, Aug 14, 2015
    Last edited: Aug 14, 2015
    I agree with Lyn that the emotional support on here is a life saver and I really don't know where I would be today without it.
    It hasn't come from the poetry section either as there you will find expressions of the emotional feelings of others which, whilst being very moving, are not actively giving personal support as posts do.

    Others away from TP are not able to be there at all the times when grief and desperation strike. TP is.

    When I happened on TP whilst searching for Deputyship for my husband, I would never have imagined being here over 4 years later, having received more support , more understanding, more compassion than anywhere else.
    As a bonus, I have gained so much knowledge as well as friendships which I greatly value.

    TP gives whatever you want it to - at its simplest it offers help, advice and information but at its best it gives so very much more.
    Just ask and it will answer.
    I cannot thank it enough for just being here. x
  10. patsy56

    patsy56 Registered User

    Jan 14, 2015
    Fife Scotland
    In the words of Ronan Keating, "Life Is a Rollercoaster" yes we have to take each day as it comes. Life becomes a learning curve and if we can pass on any help advise to someone further back down the curve, then we have at least done something good in life.

    Sorry I am emotional today.
  11. LYN T

    LYN T Registered User

    Aug 30, 2012
    Brixham Devon
    Is there anything we can help you with Patsy?


    Lyn T XX
  12. patsy56

    patsy56 Registered User

    Jan 14, 2015
    Fife Scotland
    no just had a bad week at work, and I am at least on holiday next week, planning to get to Edinburgh for a few hours with my sister, and just got to organise OH so he behaves....... caught him up a ladder last weekend, I just turned round and he was up it. Also need to do garden.......

    Emotional because I have to go to Mater's and she was just so bad on the phone last night memory wise.
  13. Omaha

    Omaha Registered User

    May 22, 2015
    For me, it is that the loss is occurring with my husband before we have a diagnosis or horrible events happening. He will be 3rd generation Alzheimers if that is what they end up calling it after awhile. But his essence is gone. I am no longer a special person to him. His memory loss makes it seem like we haven't had any shared experiences and its no wonder he doesn't miss them like I do! When the talk turns to early diagnosis, it seems to me how I see this developing should matter as much as a brain scan report. I will have been lonesome a long time before any medical people get involved. Medicine is keeping him driving safely and keeping his job but he is 61 and his ability to communicate is not always there. I can see why early-on couples fight about partners not caring anymore and then years later they find out what was really going on. I think now, I need to keep us afloat while I feel lonely. Thinking my old pal is going to reappear is a waste of my time. So I grieve before the world finds out there is a legitimate reason for it.
  14. Rivershores

    Rivershores Registered User

    Jun 10, 2015
    I too am new to this site and from what I can see it is a wonderful resource/support. So, thank you very much to all you dear, kind, brave people who are dealing with the incredible challenge that is caring for someone with Alzheimers. From some of the posts I have read I appreciate that some of you are going through much tougher times than I am and my heart goes out to you. We are all in this together.

    To date I have just read posts (rather than posting a comment) and I have drawn comfort from knowing that I am not alone. I can honestly say I have found looking after my mother, who has Alzheimers, to be the most challenging and difficult thing I have ever faced. I have been howling at the moon for years, crying out "why must she go through this" and I have felt so much grief at 'losing' my beloved mum and yet this year, when her behaviour became increasingly challenging, I experienced so many negative feelings towards her (whilst knowing I love her and must look after her) that it very nearly brought me to my knees. I continue to deal with those feelings and try to reconcile them, all the while reminding myself that it is not her fault and deep down I love her very much. Guilt has been a pretty constant companion of mine of late!

    One of you mentioned that all we can do is take each day and each situation as it comes and deal with it accordingly. That is good advice indeed. I am only just learning to stop projecting into the future as that only fills me with despair. I am endeavouring to 'relax' into the situation a bit more and just deal with whatever comes up when it comes up, knowing that I will be able to deal with it.
  15. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    Welcome to TP rivershores:)
  16. Gerita

    Gerita Registered User

    Aug 5, 2013
    Emotional impact on the Carer

    I so agree with all that's been said on this Forum - seeing my darling husband (49th Anniversary tomorrow) slipping further and further away and spending his days utterly lost id hugely painful and I must admit that I often break down and weep at the cruelty of this horrendous illness. I have no doubt that no one here deserves to have this absolutely awful disease rob us of our loved ones. So much like everybody else, I/we live each day as it comes - and as someone said above, it's been a tremendous learning curve for me because from a traditional marriage with divided tasks, it's all down to me to sort things out. Surprisingly, not least to myself, I've managed to overcome each challenge as it presents itself to me and I must admit that I feel that my character has developed even further.
  17. mabbs

    mabbs Registered User

    Dec 1, 2014
    I am finding that I cope for a few days and then everything crashes down again, my poor hubby no longer has any idea what is happening to him, so I suppose its a blessing in one sense for him, for me all I see is the man I married, disappearing before my eyes, a strong man, who never showed fear, is now a frail frightened man, and my emotions are in turmoil most of the time, I wanted to help others by becoming a befriending volunteer, but find I cant do it, how can I help others when I cant seem to help myself. The CH look after him well, but I come out and cry, I miss him, the old him not the one now. I read comments and think I am not in as bad a place as some others, but even so I still cant cope. - Sorry folks having a bad week. Feeling sad and lonely, I know I'm depressed, but cant seem to snap out of it, haven't got the energy. The roller coaster is stuck on the down bit. :(
  18. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    Don't apologise for your feelings. You've had a really tough time & its natural you're still up & down.
  19. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    I was one of the widows, my darling John died 2 days before Christmas, and Christmas Day would have been his birthday. Even though Lyn had just been bereaved herself, she supported me, as did so many others here on TP, giving me the love and understanding that many "real life" friends lacked.

    It's heartbreaking to see the love of your life suffer from this lousy disease. It's hard not to feel bitter when mass murderers still have their memories, but your loved one, who never harmed a fly, has forgotten who you are.

    I thank God I found this site, and I know I have marvellous support, both from the other widows and widowers on here, and those who have lost a beloved parent or sibling, as well as those who are in the position I was in as a carer.

    Please always feel free to post whatever you like. This must be the only forum where we had a long completely smut-free thread, started by one of our "lads" here, regarding suitable underwear for his wife. He may not have been able to discuss this with a female friend or relative, but he was able to on TP.
  20. truth24

    truth24 Registered User

    Oct 13, 2013
    North Somerset
    I too have found TP as an invaluable source of friendship, wisdom and help with my feelings. Have never been able to talk to friends and have the same non judgmental understanding in the way that I can here, so please express your feelings when you need to. We are all experiencing the same hurt and worry.

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