1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

    Financial abuse can have serious consequences for a person with dementia. Find out how to protect a person with dementia from financial abuse.

    Sam, our Knowledge Officer (Legal and Welfare Rights) is our expert on this topic. She will be here to answer your questions on Wednesday 26 June between 3:30 - 4:30 pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

What to do, or where to go.

Discussion in 'ARCHIVE FORUM: Support discussions' started by connie, Oct 17, 2005.

  1. connie

    connie Registered User

    Mar 7, 2004
    Lionel has been so strange these past two days.. It is as if he doesn't want to know what is going on all around. No interest, no input.

    However late tonight he has ventured that he sees no purpuse to life anymore. This I accept, however it is only me he ever voices these opinions too.

    To the CPN, "life issn't all bad", to the day care centre, well you would think life was a bed of roses, they all love him.but to me.............I struggle to keep him 'afloat'..

    I know his perception of life and mine is going to be different, but It is so hard sometimes........This man, who still has so much going for him, sinking into what......

    We have had a somewhat pleasant evening, partialy due to my having an extra glass of wine, but this is not the answer. Where do we go from here.

    I expend so much of my life keeping him on board, but despair of what will happen if I give up.

    This awful desease has taken the two of us.. Where do we go from here. Connie
  2. jc141265

    jc141265 Registered User

    Sep 16, 2005
    Sad days

    Connie, when I have read other posts of yours I have thought to myself that your Lionel sounds very much like my Dad in the early stages and this latest post appears to confirm it.

    I hope, for your sake that Lionel doesn't go down the same path as Dad from here, and this is just a bad week, but am writing to let you know what happened with Dad so you have some forewarning if he does.

    Dad was always a very capable man, very smart, very strong, the one we all relied upon so it was especially hard when he changed to become someone who became very down about life, he didn't want to try to keep his mental skills anymore, he wanted to give up, he didn't seem to care about anything.

    Mum, I think found this very hard because she was suddenly put in a position where she had to be the one who fought for them at a time when she too wanted to just go sit in a corner and cry. No longer did she have a partner for support, she was alone. This period I think also started a pattern of anger for her against Dad because try as she might she couldn't forgive him for just leaving her with the fight alone.

    At first Dad just seemed to suffer from a general apathy but as time progressed he became more and more suicidal. My parents live on a farm and the situation got so bad Mum had to remove the guns on the property for fear of what might happen. He began as angry suicidal and then the anger left him and in some ways this was worse, for now this amazing, superhero of a man became a man who just sat on the couch at home and cried and cried and cried.

    Until this point I had never seen him cry, except at his mother's funeral and that was just a little teary eyed. It was such a shock (one of those shakings of the foundations I talked about in my war zone post) to see him reduced to this. We all did our best to shake him out of his despondency but nothing seemed to work. Like you though we found he was a whole lot better at keeping up appearances around non-family members, and better at it around his kids than around my Mum.

    Finally Mum had to talk to the doctors about it. There is some debate that this change in attitude is due to the god-awful knowledge of what is to come or the fact that parts of the brain that are in control of motivation and apathy are beginning to be affected by the disease, I suspect its due to a mixture of both.

    As the first is inescapable in this disease until a cure is closer at hand, we had to resort to treating this symptom of the disease with medicine and Dad had to begin taking anti-depressants. Something we are not very keen on, but there appeared to be no other option at the time, even new babies in the family could not make him smile.

    If you do go down this path, please be aware that different anti-depressants have different effects so don't just stick to the first type you get, if you feel that you don't like the side effects (one type Dad took initially made him so happy he'd walk around laughing maniacally all the time, this other extreme was just as unsettling), get your doctor to work with you to try different types.

    One thing to note though, the stage did pass for Dad, he is no longer on anti-depressants and regularly smiles and laughs at/with me these days.

    Best of luck and as i said I hope for you that Lionel isn't going down this path, it will be very hard and you will need all the help and support you can get,
    I'm here if you need any emotional support,
  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hello Connie

    I think your situation is similar to mine some 6-7 years ago with Jan, which is not to say that Jan and Lionel are themselves at that same stage. [grief, does that sentence mean anything at all?]

    There's a line we cross in this dementia business, and forgive me if you think you crossed it some time ago, I'm just thinking aloud here.

    For many years after Jan started to show her symptoms, we could talk, laugh, and pretty much manage as we always had.

    Then in the late 1990's I'd find myself thinking "why did she explode like that?" or "why can't I re-teach her how to... [write name, etc]?" and "if only she could..." and so on. Oh those 'explosions'... I used to fear and hate them so much.

    My most weird experience was to try and get Jan to develop an interest in something totally brainless that would keep her amused with no mental effort each day. So I tried to get her to develop a taste for "Eastenders".

    Well, she had always been far too bright to like the soaps, and remained so until the end. However, my sitting with her watching "Eastenders" got me hooked and for a year or more I would be glued to the set each evening the programme was on.

    The fact is that it is not a choice of theirs to lose interest in things. Their ability to comprehend and concentrate simply.... goes. That is why, while activities are worth trying to pursue, we should not be disheartened or hurt when our loved ones won't engage. If they get agitated when we try, then don't try at that time. A few hours later it may be different. If not, then don't try then either.

    I found we spent evenings just sitting on the settee with no sounds around at all, just holding hands, with me talking to Jan about totally inconsequential things. I do the same thing now, many years on, the difference being she is no longer at home, and is in a far more advanced state. Perhaps I do it just for me now? :confused:

    [Nina always says I talk about inconsequential things! Perhaps I always have, or maybe I just learned to...] ;)
    Point is, I like to think we both gained extra time together by my accepting her situation and not trying to 'cure' it once I had figured out the problem.
  4. jc141265

    jc141265 Registered User

    Sep 16, 2005
    By jove you've got it

    Brucie again you said it perfectly. It was not only the depression but the inability to do things anymore and sheer frustration at the rest of the world thinking he could if only he tried a little harder. :(

    Dad got to the point where he couldn't read, write, watch TV for any long period of time (and now he doesn't seem to notice it at all)nor listen to music. We bought him meditation balls, stress balls, things to play with in his hands, but nothing interested him. Buying birthday and christmas presents became quite a task, never before I had I bought Dad just clothes, bedspreads or chocolates as I liked to give him something that he would enjoy and had special meaning to who he was...surprisingly now I spend a long time searching for 'special' clothes, bedspreads or chocolates and have adapted quite well. But for a while there I would walk around the shops and go 'ooh thats a great puzzle...no, oooh he'd like that book...no, oooh he'd enjoy that video....no, oooh the things he could do with that tool...no, oooh he loves that singer I'll get him their CD...no,no,no!' and so on and so forth! :confused:

    Dad was so into rugby and cricket before dementia and none of this catches his attention anymore. One skill he kept for a very long time however (until about a year ago) was the ability to catch a ball (and sometimes throw it). I guess that one stuck because it becomes like a reflex from childhood, you might want to try that with Lionel, Connie. I don't know if it depends on whether they played sport in the past or not.

    As for the just sitting and talking and holding hands. Yes that worked for Dad as well. You have to get quite clever at talking without asking too many questions as this can lead to frustration and confusion, but over time you can develop this skill. These days I break up my conversation with him with giving him snacks and tidying him up (not in a patronising way just a friendly brush of his hair, offer some moisturiser for his skin, point out that the carers haven't wiped the sleep from his eyes and would he like me to help get rid of it, etc) We also go for walks where I walk with him some of the time, I let him walk ahead for a bit, or I go ahead and wait for him. I also stop him sometimes and ask for a hug or give him a kiss, suggest we sit down and so on. Its amazing how quickly an hour passes by! :eek:

    Last but not least, Brucie said:
    Never fear, if Jan's anything like Dad you are still doing it for her as well. ;) Dad has a notebook kept about his care at the home and I always grin to myself where I read the recommendation that he needs one on one attention. He may not understand what I am saying much anymore (though he does seem to react if I say something he doesn't like!) and cannot respond but dang he gets the most one on one attention in that place and it ain't from the staff alone! You just have to look at the other people who don't get visitors and you know you are doing it for them (Jan/Dad).
  5. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Dear Connie, my Mum used to sometimes say she wished her life were over too, this was in the lucid periods she had in between the other dementia times. It hurt to hear her say this as I knew that at that moment she was aware of how her life had become. I would hold her close and tell her they hadn't finished painting her room up there yet, and that till they did, she would just have to stay with me like it or lump it. Then we'd have a little cry, I'd say, I'm not that bad to live with am I? She'd say, course not my love, and I'd say lets have a cup of tea shall we. By the time we'd made and drank our cuppa, the melancholy had passed and on we went in the dementia mode, previous conversation happily forgotten by Mum, although still deeply painful in me. Thinking of you, much love and a big hug, She. XX
  6. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Peg sometimes says that she wished she was dead.
    I t is when she has made a mistake ,done something wrong and I am convinced she says it with frustration.
    She does not watch Tv,she cannot understand it,the programmes and the adverts all run into one.
    She cannot make sense of the adverts,there again often I cannot either.
    Walking is dificult now,very unsure on her feet, I think she sees steps and holes which are not there.
    Her focus is really bad and she has difficulty in taking a cup or plate,or anything for that matter.
    We have little flash rows,last about 2 minutes and are forgotten ,by her that is.
    However she can smile,she can still laugh,we still have cuddles and we still tell each other I love you.
    These days I seem to have an aggresive uncaring wife,a sad pitiful wife and then at the good times my own Peg comes though.
    Thinking of you Connie,I think we have similar lives.
    Warm wishes
    Norman :confused:
  7. blue sea

    blue sea Registered User

    Aug 24, 2005
    Your posts are always so positive for others so hope you are feeling the support from all of us now. This illness is relentless in its grip and it is so hard for the relatives to cope with each sign of a deterioration. Hopefully in this case Lionel's low moods are a temporary phase but if not, a mild anti depressant could make a lot of difference. Stick in there but get all the help you can. Lionel will feel your love in everything you do for him. As the illness gets worse there will be many difficult phases ahead but your love is constant and will see you through.

    Blue sea
  8. connie

    connie Registered User

    Mar 7, 2004
    Thank you all for your good wishes and words of wisdom and encouragement.
    Dear Norman, I think you are right with the 'similar lives' comment.

    Lionel has been on antidepressants for the past 18 months. I am trying this new tack of not invading his 'space' and letting him just 'be himself'

    It is hard as I have kept up a regime of stimulation, believing that it is the best thing to do. But maybe I should back off a little. Who is the stimulation for? Is it me because I don't want to lose the essential man. I believe he is tired of trying to still be something he isn't.

    It is, again as Norman says, a case of when he is good he is very good, but the rest of the time !!!!!

    He is very disorientated tonight, but he knocked his glass over and broke it. Frustration follows, and realisation that he has done something WRONG (only in his mind). Once again thanks, and take care of yourselves. Connie
  9. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Dear Connie
    I think you are right on the stimulation .
    I too have given up on that one.
    I am now trying not to pass any remarks about anything that goes wrong.
    I am sure that worried Peg,she would say"what next"and I thiught I am becoming like a strict parent,so I am now letting it all go over my head.
    If she drops drinks,drops food I just tidy up and say nothing.
    PS have you still got your woods?
  10. connie

    connie Registered User

    Mar 7, 2004
    Yes Norman, woods and shoes. Who knows I may play again someday. Have a good weekend, Connie
  11. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003

    Connie, it is strange to read your thoughts about stimulation - this is what I wrote in my diary this week:

    "It is difficult to allow for the fact that my husband’s needs do not now correspond with our expectations of life: I am keen to keep him stimulated, give him a change of scenery, include him in as many activities as possible, when in fact he seems content to be at home where he feels safe. The effort of leaving the house, facing obstacles we are not even aware of, being forced to do things that don’t make sense (like getting into the car) because he doesn’t understand our instructions --- all this is just too much for him to cope with now, and although the thought of him becoming housebound fills me with the horrors, for him it might be the kindest and best thing …..

    The problem lies with me not wanting to do things and go places without him!"

    Having said all that, I spent a considerable amount of time today getting him to put on his shoes and coat, and even longer coaxing him to get into the car and later out of it again - just for the exercise, because I don't want to give up.

    If we don't have our mundane little outings, we will have even less to share and to talk about, less purpose to our days.
  12. connie

    connie Registered User

    Mar 7, 2004
    Thanks Nan & Norman, it is interesting how we come round to the same way of thinking, I guess it is all to do with the similarities in this journey. I know that not everybody shares my thoughts, indeed some of my friends in our Young Onset group think I am just giving up.

    I shall see how things go. Keep in touch on this one, Connie
  13. blue sea

    blue sea Registered User

    Aug 24, 2005
    I can only speak from my owm experience (perhaps we should all attach that to our messages, like Bruce) but I don't think it's giving up, it's adjusting to the realities of the progression of the illness. It is important to get a balance. It is worth keeping going with your normal routines and activities for you as much as them but gradually these do get more difficult and there will be days when it is kinder and easier for both of you to accept that it's better to 'let be'. I found with dad that stimulation did help keep him 'with me' but gradually he went further and further into a separate world which did not link in the same way with ours. I still try to reach him, with conversation and photos and sometimes succeed. I think that I do this as much for me as him but I don't see that matters. I have gradually stopped doing the things that cause him confusion and anxiety, like taking him out. I think you know somehow when it's right to stop an activity. It must be so very hard when it's your partner. The best advice I had at this stage was to take each day, even moment, as it comes. Not to think ahead too much, just try to get what pleasure you can from the small things. It is vital to keep some of your own life going as well, so I hope you get some respite help.

    Thinking of you
    Blue sea
  14. Shakey1961a

    Shakey1961a Registered User

    Nov 7, 2004

    Just thought I needed to write to say I'm thinking of you as well. You were so good to me after the hell I've been through this past year.

    I have seen a marked deterioration in Mum after not seeing her for 10 months, but when it comes down to it she's still with me. Yes she crys, and is in pain sometime, but when she sees me she still smiles and gives me a kiss. Sometimes she'll have a real good chuckle over something - God know's what goes through her brain - but to see her chuckle and smile it seems to erase all the times when she's not been too good.

    It's a bloody hard thing to cope with! No matter how hard it becomes you still love each other, even if he can't understand that. Perhaps he can, I think mum can.

    Perhaps love is the one thing they can keep hold of for a long time.

    If you've got a faith any of you, try 1 Corinithians 13. May bring a tear to the eye but it's true.

    We could all do with an Alzheimer's meeting, in the middle of a field far away from anybody so we can all come and scream our heads off!!!!!! Ha!
  15. connie

    connie Registered User

    Mar 7, 2004
    Thanks Shakey for your kind thoughts, and my love to you and your Mum.

    Lionels daughter came to visit today and was very shocked at his deteriation. I thought about this and then realised she has not seen her dad for 5 months. This is when you start to look back and compare. Yes I realise he is not the man he was 5 months age, that is a long time in this illness.

    Still we have had a good day today, so I am grateful for that. Love Connie

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