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Help? (posted by ksmith)

Discussion in 'ARCHIVE FORUM: Support discussions' started by Ksmith, Sep 24, 2007.

  1. Ksmith

    Ksmith Registered User

    Sep 24, 2007
    8
    Buckinghamshire
    Help?

    I am also new to this I have no idea whether I am writing in the right place and feel wholly guilty for entering this and seemingly posting my own problem rather than replying to someone else who is suffering probably more so than myself... My grandfather has dementia they have never really told us how it was diagnosed or what form etc etc he never experienced any of the text book symptoms (no memory loss or shouting or distress or anything he just gradually seemed to dissolve as a person) and when we try to find out from GP etc what type/how diagnosed/etc etc now they say it makes no real difference as they do not feel he has that long. Degeneration seemed fairly rapid in my opinion and is still worsening compared to when I saw him about 3 months ago he used to look at me and would choose to hold my hand and smile and when asked a question could reply yes or no ... I went to visit on sunday last week and things have become so different he looks straight through me his mouth remains open he did not seem to acknowledge my dad (his son) or me at all and his hands just grip the chair then relax in repetitive movements he crosses and uncrosses his legs frequently but did not seem to acknowledge our presence or affection at all. He is no longer eating himself he is being fed pureed food and can only walk supported by two carers and I am completely destroyed by all this I cannot stop crying (god I sound so selfish!!!) I just wish someone could help him he cannot speak he does not seem to communicate whatsoever and is awake but so vacant and I love him so dearly I need to know what I can do to ease his pain I don't know what or how he feels he used to cry someimes when we left but now there is no emotion, no flicker or recognition nothing and this world is so cruel to do this to someone so lovely and adorable and it has completely destroyed me I had nightmares since seeing him just want to be with him all the time to cuddle him and tell him it will be ok but no one seems to know anything the carers at his home are lovely and tell me he is ok but how the hell can he be ok he can't tell us so how on earth do they know!!!!!!!! Can anyone help me understand and advise what I can do to ease his suffering PLEASE?
     
  2. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,419
    I've moved your post to its own thread so that it's easier for people to repond to.
     
  3. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,419
    Firstly welcome to Talking Point.

    Do not feel guilty about asking for help - I think 99.9% of us post our first post when we are desperate for some kind of assistance.

    It is so very difficult when the person you love can no longer respond to you, or even seems aware that you are there. I wish there was something that I could say that would make this easier for you, but to be honest, this is a terrible disease (whatever might have casued it) and difficult to watch. If he will allow it, touch is often the only thing that you can do that might comfort him, although I don't think you should discount just talking calmly, in the same way as you are advised to talk to coma patients. No, you may not get a response, but no one can no exactly what is going on inside him, so at some level it might provide comfort.

    Best wishes
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,721
    Kent
    #4 Grannie G, Sep 24, 2007
    Last edited: Sep 24, 2007
    Hello Ksmith, welcome to TP.

    I`m really sorry to have to say this but I think you are suffering, more than your grandfather.

    When the carers at his home tell you he is OK, they probably mean he is not suffering pain and is functioning.

    He still has the ability to walk, with help, and eat, with help. Those are the things you can see. What you cannot see is his recognition of you or your father, and that`s the hardest thing of all.

    He is probably unaware how he appears to you.

    But because he does not appear to know you, doesn`t mean he doesn`t know you. No-one knows what he can see or hear. I have been told that hearing is one of the last senses to go, and that`s why people who are unconscious after accidents, often respond to favourite music.

    His repetitive movements are possibly involuntary, a bit like nervous tics. I wouldn`t be surprised if he is unaware of them.

    Of course this is only my opinion, as I have no medical training and only know what you have told us, but that`s how it seems to me.

    I do understand how this might appear to you. It is very distressing to watch. But if you can, try to behave as normally as possible with him. Talk to him, even if he doesn`t answer, or looks at you with a blank expression. Give him a hug, to show how much you love him, hold his hand stroke his arms, do anything that just might register with him. That`s all I can think of really.

    Take care

    Love xx
     
  5. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Ksmith, welcome to TP.

    You're obviously very distressed, and you are quite right to post. You're not expected to post to support others until you feel ready, though you might find it helpful to join in threads where others are feeling the same as you.

    I can't really help with you unhappiness, except to say that it's perfectly natural. This is s dreadful disease, and it is very hard to see someone we love losing parts of themselves.

    Just spend as much time as you can with your grandfather, just talking to him, and stroking his hand. He may not remember your name, or even your face, but you will be able to give him so much comfort.

    Post here whenever you like, there is usually someone to support you.

    Love,
     
  6. blue sea

    blue sea Registered User

    Aug 24, 2005
    270
    England
    Hi Ksmith
    I am so sorry to hear about the deterioration in your grandfather, whom you love so very, very much. This is a very cruel illness. You can't make it better, or stop your grandfather's decline, sadly. You can only do what you are doing - staying as strong and calm as possible when you see your grandfather, showing your love by a hug, a kiss. If he is happy to let you, stroke his arm or back, he will find this comforting. Your dad will be finding this so upsetting too, so support each other. Have a cry when you need to , after you have visited. Post on here as you can share your sadness and pain and get support from others. Because of his illness your grandfather cannot show his love for you or your dad in the same way he did - but it still exists. It will do even after he is at peace from this dreadful illness.
    Thinking of you.
    Blue sea
     
  7. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    945
    leigh lancashire
    Dear MR smith,welcome to our world.I welcome you because TP is such an inspiring site and can give advice you would never dream available,such friends that you feel you know them..love elainex
     
  8. rhallacroz

    rhallacroz Registered User

    Sep 24, 2007
    106
    merseyside
    Hi K

    Hi there
    This is my first post and yours was the first post I read yes we all say it is a dreadful disease and why does it happen to us and our loved ones. My dear dad has it vascular I think though never diagnosed all I can say is I know how you feel. I have young children 8 and 11 who are so sensitive to his needs although I hate them witnessing his deterioration and seeing me so upset all the time. I can;t help thinking that he is 83 and has lived until now relatively illness free. We all have to die of something but at least we can be there and support them and try and make the most of the time we have left even if it is just a hand held or a tear wiped. Many posts here talk about a long bereavement it is certainly that but other diseases are also horrid and cruel such as Cancer MS Motor neurone disease etcc. We mustnt feel sorry for ourselves after all I am sure they wouldn;t want us to be sad over them, keep your chin up and remember life is not a rehearsal enjoy it as much as you can.
    Thinking of you
     
  9. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    KSmith ..... and rhallacroz ....... Welcome both. We all post our own problems here whether it is our first post or our hundredth and beyond ...... and yes, hopefully, sometimes, we can give something to someone else.

    Sometimes, just reading someone else's problems or situation can give some strength or ideas or support to others .......

    KSmith - your grief is clearly overwhelming just now and I wish there was more I could say to comfort you ... I feel I must echo Sylvia's comment that you seem to be the one suffering the most just now ....... please ... take some time out to think of and care for yourself and you will be so much stronger being able to care for your grandfather in whatever way you can ...

    Much love, Karen, x
     
  10. Ksmith

    Ksmith Registered User

    Sep 24, 2007
    8
    Buckinghamshire
    Thank You

    I just had to write a huge thank you for the overwhelming response from people I did not expect to receive any messages and certainly had no idea so many people were in similar situations to us. I will take all advice and of course whenever we visit Grandad we never ever let him know of our distress as like you say the sadness is probably more for ourselves and our own emotions than for him ... saying that just makes me fee more selfish! I appreciate no one can answer the one burning question which is what does he actually feel that is hardest part about this terrible condition I can only pray he is not truly aware of things as the thought of someone trapped inside a shell that cannot communicate their emotions is more than I can cope with considering. He certainly does not appear distressed. We are now advised he is being moved into the nursing floor of his care home in the next few weeks for his own benefit which we all have mixed emotions about as whilst we know it will mean he can be more wholly cared for and treated to remain comfortable in the same sense it brings home the fact that the condition is not going to improve and even after everything its only natural to have that glimmer of hope that suddenly one day they will realise it was severe depression or a vitamin deficiency and not dementia at all... goodness how I wish dreams came true. They have a cat in the care home that they say helps people via pet therapy by touch and unconditional love they gain from 'Pepper' (the cat) and being a cat and horse owner myself I am aware how much pleasure they can bring... the only thing that brings a half hearted attempt at a laugh in me is that when at home in previous years my grandparents had 2 cats and my grandad did not really have any involvement with them at all so to be honest he probably thinks the cat is more of a nusiance than a pleasure haha. I think we are visiting him again at the weekend so I will trya and appear more positive this time for his sake its just so so hard to see someone you love (AND THE OTHER PEOPLE IN THE HOME I DON'T EVEN KNOW!!!) suffering I only wish I could do something practical to help rather than just have to sit back and accept as it simply is not fair. He would far rather be outside gardening or tinkering about under the bonnet of a rusty car like he always did but now he can't even do that and we did walk him outside in his chair a few weeks ago which he seemed to enjoy but we are now not sure whether that would be too much for him and no one seems to be able to tell us whether it would or not... my dad would hate to think we missed the opportunity of giving him some pleasure taking him for a walk in the sunshine but in the same sense if we take him and he becomes unsettled or upset what then.... we may make things worse permanently or should we just try and see?
     
  11. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,721
    Kent
    Dear K,
    I know how much you wish things could be different, but unfortunately you have to try to make the most of what`s left.

    There`s no harm in trying to take your grandfather for a short walk, as long as the staff in the home OK it. Just be prepared to return with little notice.

    What are the grounds at the home like? Are they nice enough to take him for a short outing in the grounds?

    It`s good he doesn`t appear to be distressed, at least you can relax knowing he feels comfortable and safe. The involuntary movements he has won`t be upsetting him.

    It`s a lot to come to terms with, but you have the best interests of your grandfather at heart and will do what`s right for him.

    Take care

    Love xx
     
  12. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    3,518
    Can anyone help me understand and advise what I can do to ease his suffering PLEASE?

    If it is any comfort he is likely not suffering as much as you might think. Dementia patients often have very little insight into their own situation, so many things you regard as distressing he is most likely not even aware of.

    All you can really do is to see that he is kept physically as well and as comfortable as possible. Even if he cannot recognise or respond to family, their presence may be a comfort, as would things like holding hands etc.

    It varies from patient to patient.

    It sounds dreadful, but in all likelihood, you are suffering more than your grandfather is.
     
  13. Ksmith

    Ksmith Registered User

    Sep 24, 2007
    8
    Buckinghamshire
    Thanks

    Thank you Sylvia,

    The grounds are pleasant but very small ie: under quarter of an acre of grass surrounded by car park backing onto the building itself and right next to train station so would prefer to take him somewhere more quiet ie: a park with ducks and a river or something a short car drive away again though it will depend on carers opinion and I guess how he is on the day. Its so hard as my dad has 4 sisters and 2 brothers and a good few of them have visited my grandad once or twice in the 2 years he has been in care as they are quite selfish and have a strange attitude to family (my nanny (grandads wife is ill herself with Parkinsons and can you believe suspected early stages of dementia! and has in last last fortnight suffered 2 strokes so is currently in hospital - she is really not the easiest person to deal with and never has been and she stopped wanting to visit my grandad about 3 months ago claiming 'he says nothing' as her reason the problem is we are not entirely sure whether her feelings about all this are simply due to her being the awkward person she is or due to her own mental and physical ill health...) so really my dad and 2 of his sisters are the real 'rock' to my grandparents my dad and mum are the ones who push for everything (ie: getting him into care in the first place as he simply could not live independently any more as was extremely unhappy and having frequent falls and accidents at home) its been a real messy journey to get to where we are today my dad visits as often as he can and so do two of his sisters so in whole my grandparents are visited at least 4-5 times a week (more than they were when they lived at home!!!! ironic isn't it) my aunt's both claim he chats to them but the carers tell us this is not correct and is simply their way of dealing with things but it is hard as my dad is such a strong man and I absolutely adore him it terrifies him that my grandad may be trapped inside himself screaming out without being heard so we try to reassure him that probably is not the case etc he even suggested formulating a code so that is he ends up the same way he can let us know how he is feeling... it is torture seeing people you adore so disturbed by things yet when I am sad my dad feels he has to make me feel alright and reassure me grandad is ok ONE BIG endless circle of guilt/despair. My grandad seemed to hold my hand when I offered it to him at one point but its so hard to tella nd the last thing I want to do is force affection on him if he is not wanting it but I need to show him we are there in whatever way I can. I ramble on so much don't I I do wholly apologise... One thing that I find hard to deal with is they have put a doll in my grandad's room like a baby doll do you think this is for affection purposes (ie: like a child would gain comfort from a doll? or do you think this is more likely about trying to maintain response and learning ie: pointing out the eyes, nose, mouth etc to retain brain activity) I want to know as if he needs comforting perhaps I can buy him a teddy or blanket to hold rather than him being left to make do with a plastic second hand doll - I am too scared to ask the carers this question incase I am invading his privacy... sorry to droan on I am sure you have your own daily problems rather than having to deal with mine (I bet you think I am a child the way I talk I am infact 28yrs old...)
     
  14. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,721
    Kent
    Dear K.

    Don`t worry about `droning on `that`s what TP is here for.

    I just want to ask you to be sure the staff put the doll in your grandfather`s room. He might have taken a liking to it himself, and taken it. But by all means take him a soft toy if you think he will like it, he probably will.

    All sorts of things appeared in my mother`s room when she was in a home. I don`t know where they came from, but nothing was dangerous, so I left them there.

    Please don`t be afraid to ask his carers anything. Anything that helps you understand your grandfather at this stage, is good. If they think you are invading his privacy I`m sure they will tell you. It`s more likely they will see a heartbroken granddaughter who wants to understand.

    It doesn`t matter how old you are, if you love your grandfather so much you are bound to be devastated.

    Love xx
     
  15. Ksmith

    Ksmith Registered User

    Sep 24, 2007
    8
    Buckinghamshire
    #15 Ksmith, Sep 25, 2007
    Last edited: Sep 25, 2007
    Thanks

    I hadn't even thought of the fact that perhaps he chose to take it there himself... so thanks for making me think more openly. I have a 'scientific' understanding of dementia from a more clinical perspective simply due to the degree I did at uni some years back but when you actually become involved in the way it affects someone you love its a whole different scenario. He never went through the forgetful stage at all in any form the only sign he ever had I recall some years back following a severe car crash (he was driving) the accident was said to be due to him having an unexplained black out but that was years and years ago...I think the worst part for me is that grandad was never a big 'talker' he was always very quiet and seemed to always 'settle' for things nothing ever seemed to shock or surprise him and I never ever remember him really having an 'opinion' about anything and if he did he certainly never voiced it I guess thats why this is so hard to witness as he is not all that dissimilar now to who he actually is if you know what I mean but its the little things that I find soul destroying like the fact the carers tell me he loves his cup of tea! I mean when you think about what people love in life tea doesn't usually come into being what summarises enjoyment does it other than when you think of a baby loving its milk and the fact he still sits as he used to with his little legs crossed the same way as always thats the part that makes me cry ... knowing he is still him but not being able to tell him all the things I should have done but never seemed to find the right moment - unlike my mum's parents who had a literal involvement in my life and still do ie: know what I do for a living, what I did at uni etc my dad's parents never really had the same kind of involvement in my life but I still love them just as much and I only wish I had shown it more by making the effort to visit them more often when I learnt to drive rather than taking it for granted they would always be there ... shows my immaturity really - its just made me question everything and my dad is so like my grandad even looks wise and I just think god what if this happens to him - he is thinking that too as says he simply couldn't stand being in a care home like my grandad as there are people surrounding him (all dementia sufferers) who constantly scream or swear or are aggressive and shout at us when we visit or play with dolls and colouring books etc and I appreciate it affects people in such an individual way but to be involved in it is truly destroying as I feel for them all so very much and I wonder if he sits there thinking why the hell have they left me here... perhaps that was why he used to cry when we left a year or so ago - if only we could have cared for him at home we would have done but it was simply impossible and now I just want him to know he is adored and yet what if he does not know that and passes away not understanding what is going on frustrated, confused, angry and yet not being able to tell us it all just seems so so unfair. Thanks for your kind words I appreciate them from the bottom of my heart and this is just my way of relieving myself without putting undue pressure on my parents by going over and over something that I know cannot be made right I hope I am not coming across as too morbid I just need to vent what I have in my head and its easier when you can write it down as you then feel you have offloaded even if it is to a sodding computer! :)
     
  16. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    3,388
    Buckinghamshire
    Dear Ksmith,
    We expect parents and grandparents to be around for ever. You obviously have some insight into A.D./Dementia from what you have written. My husband who is 62 was placed in a EMI Care Home in May. Now Peter had always been a hands on Grandad. Picking up children from School, taking them dancing, singing lesson,you name it and he was there. When Peter was diagnoised 4 years ago,it was complete devestation not only for his 4 step-children but the 6 grandchildren. They had their special things that they would do with Peter, i.e. gardening, sitting with him having tea and biscuits, joking and playing with them. When I got home after diagnoises, my children said"How do you want us to deal with this". I at the time did not know how I was going to deal with it myself as I am registered disabled. Carry on as normal - family get together, lunches, fun days. The 4 Grandchildren who live nearest at the time they were 3,4,7and 10. They treated Peter in exactly the same way. The younger 2 knew Grandad had a poorly brain. As for the 10 year old, I use to pick Lauren up and collect her because she was appearing in Joseph. Taking Peter along each time, I could sense he was not too pleased go out again. When Joseph opened I took Peter to see it and although he did not say anything at all he had tears streaming down his face. Now 4 years down the track, they take Peter is favourite sweets, Guiness and they go in a give him hugs and it is really very difficult for them as you yourself are feeling, when you love someone and you cannot understand WHY! You sound a very sensative person and your feelings go deep. Your Grandad is still there, take him a cuddly toy (Peter has plenty and he does associate them with Grandchildren). If I remember correctly, he loved gardening. Why not take in a pot plant. One thing I notice with G.C. is that they look into his eyes and say hello Grandad. There is a slight recognition there in his face. If you feel like giving him a cuddle give him one. When I go to visit him and he is now in the final stages, the Staff tell me that when they say name...he looks up and smiles. To-day I went to see Peter and I am being honest i dread every visit. But I actually made him laugh. O.K. I will tell you it might make you smile. Peter had cut his arm and it was bleeding heavy. So Derek (One of the Staff) had dressed it, so I held Peter's are and said "I see you are being a bleeding nuisance". Thats what made him laugh. So deep down inside although we may not always see it they is recognision. Telling him our eldest Grandson proposed on girlfriends 21st birthday, Peter got all excited. The illness changes a person but the person you love is still there. Lauren who is 14 said in a message yesterday "You have done so much for my Grandad and I love you so much. So I may be 63 but when I get emotional, boy do I get emotional. I do admire you for what you are doing. God Bless. Christine.
     
  17. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #17 Margarita, Sep 25, 2007
    Last edited: Sep 25, 2007
    what stopping you from telling him now , what you always wanted to tell him . write it all down then read it out to him on your visit

    your not forcing affection on him your doing just what come natural to you , it a form of communication between you both

    welcome to TP xx
     
  18. rhallacroz

    rhallacroz Registered User

    Sep 24, 2007
    106
    merseyside
    I understand

    Hi K
    I am feeling just the same as you. I struggle at the moment to keep dad at home he is 83 on saturday and suffering with vascular dementia. It is horrid isn;t it. Like I said to you last night try and dwell on the positive. I am sure you would have looked after your granddad if you could. But at the end of the day even myself as an rgn would find it very hard indeed especially on my young family and husband. It is bad enough not being able to go on holidy or away for the weekend as we feel we are the main carers even though mum is 83 and in moderately good health she needs a hell of a lot of support. Sometimes you just have to let go and put your faith and trust in these care homes and hope that the patient you GD isn;t as aware as you obviously all are. Please enjoy your life and do all the things that come into your path. Life is so short look after yourself your not being selfish its just that as carers we often neglect our own health. Listen to me I wish I could take a leaf out of my own book. Not easy is it.
    I hope the next time you see GD it is a bit more of a pleasant experience.
    Are you happy with the care home?
     
  19. Ksmith

    Ksmith Registered User

    Sep 24, 2007
    8
    Buckinghamshire
    Sorry and thank you

    Thanks Rhallacroz

    Completely astounded by the fact that even with your own issues you still find it in your heart to try and help me feel better...so sorry for your own heartbreak too x Thank you
    It is so hard.... the hardest thing is the sad realisation that he is still there in a way although it is nice to think he is still aware of things and can hear us but so many things I do not understand such as why has he suddenly become unable to feed himself or is he simply unwilling - why is he now on pureed food surely this cannot taste nice! I just hope he does not lay crying at night or anything such as that as the thought is too unbearable the carers say he doesn't but they may be protecting the family I simply don't know I just want to help him and want to ask him if he is ok and comfortable - reading peoples posts I realise there was infact some glimmer of communication when we saw him on the weekend I can't put my finger on what but when I said 'grandad it's me karen Charles's daughter your grand daughter' he gradually turned his head and seemed to look at me and attempt a smile but its like he is a trillion light years away I can only hope he feels distant too as to be aware but unable to reflect this in his actions would be horrific but no one really knows do they. Its hard as we have requested an optician see him as we don't know if his decline is because his sight is depeleted (he is a diabetic too so probable that his sight is deteriorating) his GP took him off his anti depressants a few weeks ago and he significantly worsened we were not advised of this until we enquired and so we enforced he be put back on them which he subsequently was and seems more relaxed now - his teeth are not great so we are questioning whether this has resulted in the eating problems and pureed food necessity but no one ever seems to give us black and white answers don't get me wrong the home seems lovely and his room is lovely and the carers have so much time for us when we go but it feels like a care home and all those in there have dementia so I guess grandad is simply another number to them whereas to us there are so many avenues that have not been explored the problem is at what point are you investigating for him or for us! We don't want to miss something that could have been reviewed and made him more comfortable but at the same time its so hard to know where to start especially for me as I am not really considered 'immediate' family enough to start demanding things be looked at and I don't want to insist to his detriment (ie: he may find an optician looking at his eyes very frightening..he may not! I simply don't know!!!!!!!!!!
     
  20. rhallacroz

    rhallacroz Registered User

    Sep 24, 2007
    106
    merseyside
    hi k

    Hi K
    Do you have a photo of your granddad that you could put in his room to remind the people caring for him that he too one day was just like him with a life etc. My mum has a picture of dad in the lounge of how he used to look when he was 70 a very fit man a little different to today but I really think it helps carers individualize patient care. I am an rgn but work as a midwife now the other end of the scale have to say much happier. But i remember working on a dementia ward and a few relatives had done this and it certainly does make the carer touch base. It might help. God life is hard isn;t it.
    A;) ;)
     

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