1. jc141265

    jc141265 Registered User

    Sep 16, 2005
    Anyone else have the experience that they feel like they understand a lot of what their 'dementia sufferer' is trying to communicate, despite their not being able to say many words that make sense anymore?

    I think my Mum thinks I make it all up, and sometimes I wonder if I do??

    But on my visits with Dad we seem to communicate, I manage to make him laugh, I understand when he wants to get changed and i seem to know when he is coming down with something. I can work out why he is angry or at least do things that remove the anger. But am i just kidding myself?

    I don't know, I'm not always right but I've been spot on so many times. The family keeps looking at me as if I am a nutter in denial that Dad has 'gone' however. :confused:

    Another thing that i find hard is that I come home from a visit and want to tell my partner or whoever will listen all the things Dad and I did together, what he said, how he responded but as he doesn't 'talk' in words I can't tell people unless i resort to mimicking his facial expressions and movements, and then I look like I'm the one with dementia!! And i can't really explain even with these actions because part of the meaning comes from who he is.

    Anyone else feel this way, have these problems?
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London

    But it takes a really close relationship and understanding.

    I can tell by a blink of Jan's eye whether she is with me or not; by the way she shapes her mouth as to whether she is happy, distraught, mad, confused, not with me; by the intonation of her incomprehensible shouts whether she wants an affirmative or negative reply; by the way she strings seemingly meaningless noises together and animates her face that she is trying genuine communication; by a squeeze of her hand; etc; etc

    She's in there behind the mask, and she is trying to break through. Or maybe my pictorial mind got it better when I said that she is in another room now, and I am trying to find the right sort of glazing for a new window so that I can see and understand her.

    Others probably won't understand. One doesn't unless one has experienced it.

    It is their loss.
  3. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    HI NAT it is true that you are able to understand your dad better than most people ,becouse you are so in tune with him ,you love him deeply that is why you are communicating with him ,as Bruce said ,you have to experience this ,to know . YOU do a wonderfull job with your dad ,stay strong .angela
  4. daughter

    daughter Registered User

    Mar 16, 2005
    #4 daughter, Oct 12, 2005
    Last edited: Oct 12, 2005
    Yes and No!

    "...understand a lot of what their 'dementia sufferer' is trying to communicate"

    Sometimes no, when Dad appears to be in a different dimension I can believe that he's 'gone' - his eyes say it all. Other times, yes, when he can't find the right word, even the action he attempts might not be clear, but I can also pick up on what he's trying to get across.

    "I come home from a visit and want to tell my partner or whoever will listen all the things Dad and I did together"

    Sometimes no, I just want to switch off and do something completely different (not always so easy). Other times, yes, that's the reason why I sometimes post my experiences with Dad on TP, (and probably bore everyone to death :) ) - just to be able to run through the events helps, even if, as you say, it's difficult to explain the connection with him.
  5. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    you're never a bore, Hazel. :)
  6. daughter

    daughter Registered User

    Mar 16, 2005
    "you're never a bore, Hazel"

    Er.. thank you Bruce, (is that good?!) ;)
  7. connie

    connie Registered User

    Mar 7, 2004
    Hazel, I can tell from the moment Lionel is awake what the 'mood' of the day will be. Not that he is moody, but somedays no speach, no mobility etc, but he still communicates with me somehow.
    Guess, as Bruce says, its all down to love...or something. Connie
  8. daughter

    daughter Registered User

    Mar 16, 2005
    Hi Connie,

    There are times when I can relate to Dad in that way, as I said, but there are occasions when (and it hurts to realise, let alone say it) that his mind is somewhere else completely. Then again, I know that in another five minutes/day/week he will be different again, and anyway, don't we all just 'tune out' sometimes? Perhaps I just look at it differently, or my Dad's a different type of person to Lionel, (Dad is quite often moody, but never used to be), or it's just me being too practical - or not very good at explaining myself - but it doesn't mean I love him any less, honest! :)
  9. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    The relationships between daughter and father [son and mother] and husband and wife [wife and husband, partner and partner] are simply different, and work on a different level.

    Not directly comparable, I think, equally strong in their own way.

    I think when you sleep beside someone for 30-40 years you pick up nuances of behaviour that a child would never do.
  10. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Hi all, jc141265 as Angela says, sounds like you have good empathising skills that you use on your Dad, so what if the others dont understand, long as you and your Dad can comunicate and its good for both of you. It obviously gives him pleasure to be able to communicate and you feel you have helped him. Maybe come on TP and tell us here some times rather than run the gauntlet so often at home?
    Hazel, you are too kind and caring to ever be a bore my love.
    Connie, yes, same as you and Lionel, I could usually tell with Mum, we used to have an empathy before she was ill and still had it after dementia came to stay. At times, it was all I had to go on.
    Brucie, you are so right there, every relationship is different, but being together that long, (Andy and I just celebrated our 39th year of marriage the day our first grandchild was born) you do get to know what the other is thinking.
    Sorry folks, you all sounded so kind, had to tell you how great you all are and what a good job you are doing!
    Here endeth the lesson......... :) Lotsaluv, She. XX
  11. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    #11 Norman, Oct 13, 2005
    Last edited: Oct 13, 2005
    It is true when a couple have been together a number of years,words are not needed.
    I am talking Husband and Wife,Partner and Partner.
    With the onset of AD the situation is still very similar.
    I can tell from the moment Lionel is awake what the 'mood' of the day will be
    Connie is soooo right.
    Peg will talk a lot or not at all.She may sing a little song about a cup of tea,she may appear to remain asleep.
    The talk and the song are good signs,although they can alter when the shower time gets near.
    One learns when to speak and when to keep quiet, becuse speaking might worsen the situation.
    Peg will deliver a sentence which would not make much sense to an outsider but I can most times make some sense of it.
    Two people who have benn together for a great number of years grow closer and closer together,when AD strikes, and they are forced to share one memory, they become even closer.
    The bond which keeps them together is selfless love.
  12. Elise

    Elise Registered User

    May 12, 2005
    I know what you mean when you say you want to tell anyone who will listen. I do the same. Feel i want to let them know he's still with me and i can get the best out of him. I guess to me it makes me feel that i am still special to him. Dad and i have had wonderful close father/daughter relationship even like friends. And i never want to let go of that.

    My family and carers say they can't understand dad, but strangely i can for most of the time. i know when he wants to go to the toilet and give him the time to do it for himself, which i know he appriciates. I asked one of his carers the other day does he speak to you much and she replied with a sorry look No he does'nt". I think that if they know that you want to be there and in tune with them and that you are trying your hardest you will get the right response or maybe in someway they will try realy hard to make you understand. I tend to agree with dad sometimes when i don't quite understand and he responds with a look of confusion as if to say why have i agreed with him i should be answering in another way. Which makes me more determined to try to understand him. We as their carers their loved ones know them better than anyone else and they know this. Its a little like learning a new language sign language even. Dad responds to me using hand movements like asking if he wants a cup of tea miming like i am drinking from a cup. Its nice to know that i can still communicate with him for most of the time and get a pretty good response.

    You are doing a wonderful job with your dad and don't forget you know him best!
  13. McK

    McK Registered User

    Sep 13, 2005
    Pgh. Pa. USA

    Norman - I think you say what many of us feel who have been caring for a number of years. I'm going on ten years for care-giving my wife wife (2 1/2 yrs bedddrin), and I feel blessed that I can still care for her. Her only communication with me is garble and grunts which I interrupt from being with her for our time together. Although, some feel despair at dealing with the situation, I feel that every day is a blessing that I have with someone who I have spent 43 years of married life with. I think and know that my love for her has grown over these past difficult years and I only hope that my health holds up so that I may continue to care for my love, my life. McK
  14. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    ... and when they go into care...

    I came across the following comment in my diary about Jan's illness today. It is a few days after she went into the NHS assessment unit for the third [and what we didn't know was to be the last] time - she never came home again after a bad fall.

    In such a situation where a couple has been inseparably together for so many years, everything has a 'partner tag' to it:

    6 June 2001, A day without Jan
    Woke up early (bed very empty without Jan), then walked downstairs (who would have thought Jan would ever have such problem with stairs) to the lounge (we spent such a long time deciding how to decorate it; every single thing in the lounge is a memory of times shared).

    Into the kitchen (why did we wait so long to have it re-fitted?), took out cup and saucer (we bought them way back in our first house), and put on the kettle (Jan would not use the kettle for the past year. She would say “I’m hopeless”. I would say “No, you’re not”, while knowing that she was truly without hope; one of the few times I have lied to Jan) made a cup of tea (Glengettie, Welsh tea that Jan introduced me to) in our teapot (Old Hall, we bought that just after we were married). Had an orange juice (the one with apple and passion fruit that she really loved). Sat at the dining table (we spent ages trying to decide what sort of antique table and chairs to buy) for breakfast. Had Corn Flakes (Jan always used to have Bran Flakes), then some toast and marmalade (recently marmalade has made Jan faint, for some reason).

    After breakfast, fed the cats (Jan was the one who first wanted to buy a cat, way back in 1969), then went to the car (I got this particular model so Jan could have a heated seat) and started out for Marlow.

    Drove down the drive (Jan used to go to have coffee in the Coach House with our German friends; now the drive is re-surfaced: Jan always used to complain it was so bumpy) and into Hammer Lane (across the lane is the entry to the woods where we used to walk), and on down (remembering the night Jan and I drove up the lane on black ice) towards the crossroads at Churt (we used to go to the crossroads pub after CADS rehearsals in the Village Hall). Took the road past Thursley (every year we would go to the Thursley plant sale) and then on to the A3 (this part is the route where we went to Waitrose every Sunday).

    Put a CD on—Yeoman of the Guard (we saw this at the Maltings in Farnham—we always loved Gilbert & Sullivan).

    Drove north from Guildford (we often went to the Yvonne Arnaud theatre there when Jan could enjoy their productions) past Windlesham (where we once looked at a house to buy) then on past Maidenhead (we went to a silly timeshare presentation there once and Jan got a watch as a present: never worked of course) to Marlow (bought Jan’s Christmas present, a crudely made calendar from India, there a couple of years ago).

    Entered the drive to the office (Jan always loved to go to the annual fireworks at work).

    At lunchtime went to the staff restaurant (last time I remember being there was at the fireworks and Jan was eating at the barbecue). Had burger (we had a period after our trip to the US when we ate burgers all the time) and chips (Jan liked her chips soft). Passed on the baked beans (I’ve made baked beans for Jan for the past 3 months every lunchtime).

    Didn’t feel like a dessert, but someone at the table had fruit salad (I described to their amazement how we always had fruit salad at Christmas and how we peeled the grapes).

    At 2pm ( I used to phone Jan at lunchtimes in the days when she could use a phone) left to go and visit Jan (remembering how I was always rushing to leave work so I could get home to her) in the hospital (In retrospect, the other times Jan was in hospital – when she went blind in one eye, and when she had her abdominal operation – were sweet times, because we both knew we’d be together after).

    After four years of her being away, only a few things still tug when I see them, time and changed circumstances make things less raw.

    Anyone find the stuff above familiar in any way?
  15. jc141265

    jc141265 Registered User

    Sep 16, 2005

    Brucie, I haven't had similar experiences to you and Jan as as you said it is different between partners than it is between child and parent, but I think your post has helped me understand why I am the best at empathising with Dad. And maybe I'm not kidding myself, its nice to have developed some confidence in that thought, so thanks for your post.

    You see Dad and I were always the quiet ones in the family (you'd never know I was quiet now, but I think all my deep thoughts may give away my tendency for introversion). And so, we'd sit through meals and roll our eyes at each other while the rest of the family made a ruckus, Mum would go on at me for being too quiet and not as giving, and thankfully Dad would always just give me 'that look', that told me he thought I was doing alright. One of my last days I remember Dad still being mainly in 'my world' and still able to communicate we spent sitting silently in a reception lounge while my mum insisted on talking endlessly with a sales rep about inconsequential matters, and I remember Dad and I just exchanging looks both of us silently agreeing with each other that we should have known it was going to take an hour not 10 minutes! Even the days where Mum says she is going to come visit Dad now and then doesn't show up or is 4 hours late, I guess we both are thinking the same thing still and chuckling at ourselves for being so silly to think things would be otherwise.

    I remember also two Christmases ago when I was in tears after leaving the family celebration as I said to my partner, I'm all alone now, it was always me and Dad, I always had Dad, he was my ally and now I have noone to connect with. I felt so alone in my own family!

    I think in a way this is also what made it hard in the beginning because although Dad and I had always been close we never had to make a verbal communication to understand each other, but in the beginning stages I was so upset about not having said all the things I had wanted to to Dad while he was still able to understand.

    A kind of peace has come to me now though because as I visit him each day, I'm starting to feel that he knows anyway. Yesterday, he just sat there gazing into my eyes, and then he shut his eyes for a bit and when he opened them there was tears in his eyes, and we just gazed at each other while tears filled mine as well and I just squeezed his hand and whispered that I loved him and that I would just keep being there for him as long as he needed. [Damn I'm in tears again just typing that] On the other hand Mum would have said it was just that he had dry eyes, that he was thinking nothing while looking into my eyes, that his smiles are random. But I think, I hope, I know better. <crosses fingers> And I hope I am making this easier for Dad somehow.
  16. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Dear Brucie, your post made me cry for you both, so young, so in love, so cheated by this dreadful disease, lotsaluv and a hug, She. XX
  17. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Dear JC, I am sure you are making a difference for your Dad, keep on doing what your doing my love. Love and hugs, She. XX
  18. jc141265

    jc141265 Registered User

    Sep 16, 2005
    A day in the life of...

    My very good friend 1234 asked me in a message how Dad was and for once I answered. Thank-you Pam for asking, it can be frustrating when people who aren't living this ask this question as you suspect they don't really care and what do you answer??!! Oh, Dad well he's dying, as you know, things just keep going downhill, the other day he fell over and now he's got bruises all over...Of course they don't want to hear that!

    My responses to these questions over the years have been:
    "Hey Nat, how's your Dad going?" - Response: "Oh he's okay"
    "Hey Nat, how's your Dad going?" - Response: "Oh well things are tough as you know"
    "Hey Nat, how's your Dad going?" - Response: "Fine" <gritted teeth>
    "Hey Nat, how's your Dad going?" - Response: "As well as can be expected" <thinking you don't care anyway so why are you asking??>
    "Hey Nat, how's your Dad going?" - My favourite latest Response: "How's Dad going? Well he's you know, going...."!

    How do you explain to someone who hasn't lived it, how your loved one is? Its more than just a quick response can say. For those of you who are living it, this is how Dad is going.

    Dad appears to be fairly happy at least when I am visiting these days, but he is often in another place even when i am there. I got there the other day and when I walked in he was sitting all lopsided in a chair leaning right over to the right, with his mouth a bit open and staring into space. But when he saw me, his face lit up and he 'oh, oh'd and said something unintelligible, his eyes watching me as i walked over to him smiling and sayin hello.

    I only had a quick visit with him as I had to go pick up my step-daughter from school and had rushed back from University to see him. But we sat there and I talked to him and he looked at me, and we had some kind of connection going. I told him I couldn't stay long and he seemed okay with that and near when it was time to go, 'I got the impression' that he wanted to know if it was nearly time and I told him yes it was and then he made a move as if he wanted to stand up so I helped him up. he was quite wobbly but once he got moving he was okay, not brilliant, but was able to walk although on a lean. It was always like Dad to walk you to the door when you left so I wondered if that was what he was doing....? Then he walked over to the window which looks out on the courtyard he has at his home and he looked at the table and chairs where we had sat together the previous two afternoons despite the staff telling me it was too hot to go outside. It had been nice out there, it doesn't feel so much like a jail and the breeze had been beautiful and the sky a lovely blue, Dad seemed to like it. I then said to him 'Yes thats where we went and sat the last two days isn't it?' and he looked at me 'as if to say' (I am guessing all the time as to his meaning) 'yes' so I said to him 'we'll have to go sit out there again, on my next visit won't we?', and again he 'seemed' to think that would be nice. He then wandered away from the window and looked like he might trip over some chairs so I manoevered him elsewhere and then suggested we walk to the door/gate. We did so and I gave him a hug, he didn't let go until I reached around behind and undid his clasped hands, gave him a kiss and said I'd be back. Pointed him off in the direction of the hall that he walks up and down and off he went. I left.

    Thats how Dad is 'going' this week. How's your Dad/wife/husband/Mum or other?

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