1. Rosalind

    Rosalind Registered User

    Jul 2, 2005
    Yesterday we did something that was obviously for the last time. The annual invitation to lunchtime drinks at my brother's, followed by snack for family and closer friends. Husband now gets anxiety trots when away from home, so gave him pill supplied by dr to prevent this. Drive, uneventfully, the 60 or so miles. Husband has always been a good talker to strangers, but this time quite obviously became bored about half way through, and started to just hang about by my side, looking at watch. He consumed a bowl of soup, but when offered bread, cheese and pate said he did not want any, thus worrying our hostess, and probably the other 6 or 8 people present. When we got home, I asked if he had been feeling unwell - answer was he didn't have any appetite. At supper time, he happily consumed large plate of food.

    Once, I would have said 'couldn't you at least have taken a little food and played about with it, rather than sitting there with nothing'. Now no point.

    Sister in law rang later that evening, worried, but of course he came into the room so I could not talk, even though the telephone is not in the sitting room. I felt terribly sad. Said I was going to bed to read - really wanting to be alone - at 8.30 p.m. He says he is going to go to bed too. "It's only 8.30" I protested, "you don't have to go to bed just because I do." He has a separate bedroom now, so it didn't really make any difference, but seemed so indicative of everything. I spent much of the night awake, feeling that my life is just non existent now.

    At the party, I had had some wide ranging and interesting conversations, covering book binding, a Frenchman who performed music by use of an orifice not normally connected with the performing arts, the first golf course in France and why it was where it was, and much more. At home, conversation is limited to our cats, the cold, and whether the dustmen do or do not come today. I can't bloody stand it.
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hello Rosalind

    You have just entered "the tunnel".

    There comes the point where we enter a sort of purdah. They do become clingy, because they are scared stiff of being alone without the person they trust. They are afraid we will leave them; they are afraid of 'strangers' they may have known for years; they are afraid of knowing how to eat, and whether this or that is theirs to eat anyway; they are afraid of 'strange houses' [eventually home will join the list]; they are afraid of 'strange situations' such as parties, even family get-togethers.

    Regarding going to bed.... he won't know what to do if he is left alone. Once you have left the room he will fear you have left him.

    Rosalind, it isn't his fault, it is the dementia. It may not be obvious, but he is petrified at what is happening to him.

    And so are you. And you are also petrified at what is to become of your life, both together, and later.

    How to handle it? Well we must all find what works for us, in our own situation.

    I just wrote off any outside life for a time, and simply devoted myself to keeping Jan feeling as safe as I could, for as long as I could. I lost friends, I lost weight, I lost confidence in myself. All of these can be restored later, but Jan didn't have that choice.

    Things will change from day to day. Sometimes they won''t be as bad.

    Christmas is a dreadful time, and even now, I fall into deep depression at hearing a certain song or carol, or just in packing presents for someone who isn't Jan - I know I won't ever pack anything for Jan again as she could neither see it, nor appreciate what it is, or the love with which I would give it.

    Post your feelings and rants here on TP. Try to work out what can work for you for the moment.

    There's no easy answer, I'm afraid! :(
  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Nowt like Bruce to make you miserable, eh?

    Hi Rosalind,
    my reply above does sound dire, doesn't it? Well it needn't be.

    Jan and I had many, many lovely days for ages at home through this stage. It is something one simply needs to adjust to.

    Change of focus, and as long as the realisation is there that a more normal life WILL resume at some stage, even if we won't/can't/don't recognise that at the time, then it needn't be so bad.
  4. Rosalind

    Rosalind Registered User

    Jul 2, 2005
    Oh Bruce, if ours had been a marriage made in heaven I might resent the situation less, but my husband has for a long time been a passenger in this marriage, and refused to discuss our marital problems at all. I seriously thought about upping sticks about 14 years ago, long before this.

    I am not saintly, and able to put self second all the time. Of course I don't want him to be miserable, and of course I know he can't help having his new persona.

    For years I have been the provider, worker, decision maker, but he was at least amusing, good at gossip and highly practical.

    Now on top of everything else I have to listen to a litany of complaints, he can't remember names let alone who has done what where and how, and when the boiler went wrong cancelled the man who was coming to and fix it!

    My eyes are hot and dry with stress, and I can feel the knots up the back of my neck. I dare say this is just a bad day, and things will even out but if I am being honest I yearn to be on my own.

    Moan over.
  5. Lulu

    Lulu Registered User

    Nov 28, 2004
    Dear Rosalind.

    I wish I could find the right thing to say to help you feel better. As it is, all I can come up with is that I sympathise with the sore eyes because I am just the same! Am sure it's tiredness and the stress of coming to terms with this disease that has been thrown upon us. I do hope you're feeling a bit better tomorrow ...let me know.
  6. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Dear Rosalind,
    Ican understand every word that you say.
    I am now on year 7 or is it 8? Semms like 1008.
    I have coped until now our marriage has been a very happy one but this is a different woman I live with now.
    I am edgy,on a very short fuse and it seems that every thing that Peg does is sent to try me and upset me.
    It's me,it is all getting on top of me I want to walk away,be by myself have a life again.
    I am sure my darling wife would like a life again instead of being confused,anxious and worried about everything.

    Rosalind I have no magic answers,I do need some help now and I am off to see our GP next week.
    I expect I will get some "tablets"if that makes me weak so be it,but at least,with my free time , I will cope better for both our sakes.
    Would it help you to see your GP?
    By the way tell me about the Frenchman and his music,PM if you wish,
    Best Wishes
  7. Rosalind

    Rosalind Registered User

    Jul 2, 2005
    The Frenchman's tale has been send PM, as could offend those of delicate disposition.
  8. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Strange coincidence. I took a book to a charity shop this year that Jan and I bought many years ago. One of the chapters described this chap's feats and we had many a chuckle.
  9. Rosalind

    Rosalind Registered User

    Jul 2, 2005
    'Feats' Brucie? Sure you haven't got a bit of a spelling mistake?
  10. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Well, not in my context... but maybe I just wanted to sink even lower than the subject in question, in which context:
    I was going to suggest that sending the story to the public site should be safe, as long as the "Frenchman's tale [sic]" [Sure you didn't have a spelling mistake?] is a long way off... ideally in La Belle France:D
  11. rummy

    rummy Registered User

    Jul 15, 2005
    My situation in so different from yours that I can only feel badly for you. I'm sure it is my Dad that could better relate to your situation.
    Is there any way you can get someone to come in to sit awhile so you can get out and socialize?
    Your all in my thoughts during this difficult season.
  12. connie

    connie Registered User

    Mar 7, 2004
    Dear Rosalind, you echo so many thoughts. I have only known dear Lionel for 10 years, but once we got together we made each other very happy.
    I will do anything to keep him settled but, he is not the man I met, and whilst I agree with Bruce about choice, I still feel very upset for myself.

    I feel as though I am dealing with a four year old, or moody teenager, dependant on the day. Fine, but when you try to juggle that with still being Mum to my boys, and Grandma to the five grandchildren, I am spread a bit thin. And yes I would also like some time for me.

    When I read of the heartache some of you are going through with coping with parents, I feel very strongly that I must give my children some more of my time. No they are not losing the essential 'me' to Alzheimer's, but they are still losing out with someone who is both Mum & Dad to them (hope I make sense)

    Sorry if this is a bit of a rant, but have had no sleep for the past week. Girlfriends have kept me going but its tough tonight. Connie
  13. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Connie

    sorry it is so bad at present.
    Please don't think I haven't been absolutely crushed by this whole business as well.

    When one's present, future [one's past too because that gets obliterated in the disaster that is dementia caring] and whole life goes down the tubes, how else can we feel.

    I was fortunate as I had Jan for many years before dementia struck. I was also fortunate that we had no children because something would have had to suffer. I was trebly fortunate that we were always so close to each other. Had any of those not been the case, I really don't know if I would have coped even as well as I have, which has not exactly been a triumph.

    I try to speak in as positive a way as I can now [though if you look at many of my posts they aren't exactly cheery] because I have been thrown a lifeline.

    Jan, unfortunately, has not.
  14. pansypotter

    pansypotter Registered User

    Dec 1, 2005
    How it used to be

    Dear Rosalind

    Oh how I feel for you. Christmas is so much the time that we repeat social rituals and they do seem to magnify the deficiencies. Yes I know there is no point in telling him how he behaved. But don't let it be the last time that you do these things. Try and keep up the things you have always done. your friends and family will want you to - and you must try and take your own enjoyment out of them, even whilst you recognise that your husband is not enjoying them. I feel I must be a bore to all my friends and family because I talk for two, eat for two etc. but I have a friend who has been in a similar position for many years, and I know that in our circle of friends we just took it for granted that she would chat and enjoy the event and he would probably drink too much, say not a word and go to sleep (after taking his teeth out). It does take twice as much courage and energy to go on but I feel we must for our own sake.
  15. Rosalind

    Rosalind Registered User

    Jul 2, 2005
    I'm sure you're right Pansy, and I do make a point of doing lots of things on my own.

    I should add that the annual bun fight that sparked off my utter gloom has traditionally been one of the most awful of social events - they serve sticky, sickly hot punch, with mince pies that are impossible to eat politely, standing up, and some of the people are dire - but the awfulness of it used to be our joke, and Christmas would not have been Christmas without the Punch Up in all its dreadfulness. We would giggle our way home, discussing its failings. That's what I missed....

    Still, have pulled myself together, and done some work this week which helps get my mind straight, and coped fairly well with a tantrum last night about a missing piece of paper which has now turned up.

    His frustration about where he had put the thing was pitiful - there really is NOTHING one can say to someone who is clenching his fists and waving them around in frustration, saying 'I must be going mad' and 'It's so depressing'. platitudes about 'I'm sure it will turn up in the morning' don't work.

    Mind you, I'd love it if the Tesco Club card vouchers that I have put in a safe place somewhere would turn up.....


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