1. Lulu

    Lulu Registered User

    Nov 28, 2004
    We have been gradually building up more support, and have arrived at a point where the week holds quite a lot of activity for Mum now, what with AS Group, Day Care and the rest. Just telling family why all this is all necessary, with her slow but noticeable decline WHEN, I go this morning to organise her shower, change her clothes, get her day sorted out etc etc etc, and there she is, duster in hand, bright as a button! She had showered and changed some of her clothes, blow-dried her hair ...... totally normal, a new woman!

    So WHY? Have we been mistaken all along then? Is she going to be OK again now?

    But 5 minutes later, at 8.30am, we saw the same neighbour off out to walk her dog, which Mum remarked upon. Thirty seconds later, when I asked her to give something to this neighbour when she called by, Mum said that it would be later on, because she was never, ever out of bed before midday!! (even though we had just seen her!).
  2. lou lou

    lou lou Registered User

    Nov 9, 2005
    Dear Lulu,

    I think we were having "I don't believe it !" moments at the same time.

    For many years I don't think my brothers believed me about my mums deterioration and I expect I was my own worst enemy by staying over at her house during the week and just getting on with things. I wished I'd put a package of care in place earlier but when this all started to happen I didn't know what was available. It was only after mum went into a nursing home that the Social Worker said to me in conversation "Why didn't you ask for respite care ?".

    Quite simply because I didn't know I could.

    So you carry on organising things for your mum even if the family can't quite see the nature of her difficulties and enjoy those more lucid moments for as long as you can. I think it's great that you seem to be able to see the funny side of it

    Kind Regards

    Lou Lou
  3. Lila13

    Lila13 Registered User

    Feb 24, 2006
    Glad she is sometimes better. It comes and it goes, doesn't it?

    Never know quite what to expect next time.
  4. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London

    In my experience there are no "why's" with dementia. Things just happen, and at each stage the fog can roll back a bit, momentarily and take us all aback with what we can see.

    We learn to enjoy those times, but to realise that sure as eggs is eggs, the fog will come back in again later.

    Always makes my day when [increasingly infrequently] that happens with Jan.
  5. Lulu

    Lulu Registered User

    Nov 28, 2004
    Was rushing this earlier, but hope it made sense -we saw the neighbour, and then the same neighbour later on ....if you follow! Anyway, it has got better.

    I dropped Mum off at her 'social' this afternoon, still wondering if I had been imagining things, that really there was nothing wrong with her at all, when I managed to speak to Mum's 'visitor'. Apparently, during her last visit, she had suggested that once the weather improves, they could perhaps take advantage of the lovely surroundings and go for a walk. Yes, agreed Mum, who went on to say she had never been for a walk around these parts! (not true!).

    One of the benefits, it seems, of having other people help in her support is that I am getting some feedback, which is giving me some insight into how Mum is thinking and feeling.

    Today has really taken me by surprise.
  6. DickG

    DickG Registered User

    Feb 26, 2006

    You've struck a chord. Even on the best of days Mary will suddenly say "are we sleeping here tonight", or "when are we going back to our old house" and we have lived happily here for 31 years. It hurts!

    I wonder if she wants to go back to a time when she was happy and identifies that with another place. As they say "it's a funny old game".

  7. connie

    connie Registered User

    Mar 7, 2004
    When Lionel was away for a couple of weeks, he decided the care home was one of the houses he had "inherited". Now he keeps asking me if we have sold the "big house"

    I just go along with this imaginary world, but evey now and again the essential Lionel comes through, and yes, you do wonder if you are the one imagining things.

    Do so agree Dick, "it's a funny old world"
  8. Sandy

    Sandy Registered User

    Mar 23, 2005
    Hi Lulu,

    On a positive note, have you considered that your mother's current bright spell might be due in part to all the support/activities that you have put in place for her?

    While it could be a temporary effect, it may well be the extra stimulation has given your mum a bit of a boost.

    Take care,

  9. rummy

    rummy Registered User

    Jul 15, 2005
    I can relate ! last week my Mom was an absolute brat, giving us all a very hard time. This week she is sweet as pie. Today I took her to the store, we bought a jigsaw puzzle and then tried to put it together. We had a fun time and laughed alot. Later I had to call her to tell her my brother is in the hospital and she turned into Atilla the Hun, blaming his wife for everything and just being nasty. I'm sure I am on her " _hit" list now because I was defending my sister in law. I know, you aren't supposed to argue with AD folks but I just couldn't let her slam my sister in law. I know my Mom's behavior is a result of AD but some of the way she acts is just the way she has always been except worse. A bit unforgiving and hangs onto things when she feels people have wronged her in some way.

    Trying to keep my perspective

  10. daughter

    daughter Registered User

    Mar 16, 2005
    Hi Lulu,

    I was so pleased to hear about your Mum's 'high', the sight of her all 'spruced up' must have been wonderful! It is so confusing when the symptoms ebb and flo, taking us by surprise (and along with our own emotional roller coaster), it's no wonder we end up a little giddy trying to make sense of it all. As Sandy says, it does sound as if the extra stimulation is really helping your Mum.

    Enjoy these good moments, Lulu, and long may they last!

    Best wishes,
  11. jc141265

    jc141265 Registered User

    Sep 16, 2005
    Love those moments

    Ah the 'I don't believe it' moments.

    Lulu, your story brought a wonderful image to my mind of your happy seemingly normal mum. I know how good those moments feel even now despite Dad being so far along with this disease. Funny thing is, even though I see Dad every day where he can't talk, barely walks, dribbles, yells for no apparent reason, wears nappies...even now, on the odd occasion I still have 'I don't believe it' moments. There will be a split second where his eyes flash with his old spirit, a word will come out, he will move as if he has no impediment and my heart leaps. :( (i.e. today he coughed, started to go all red in the face, had his eyes closed, was gasping for breath, I started to get really worried and I patted him on the chest and said, 'Dad, dad, are you okay?' and he opened his eyes, looked straight at me and said 'Yes', exactly as he would have 10 yrs ago!)

    You would think after 2 years of more 'I can't deny it' moments than 'I don't believe it' moments, my heart would stop leaping each time, but yet it still does. :confused: Sometimes I dream Dad gets better again ( a wonderful feeling while the dream lasts, terrible when it ends), sometimes I daydream that he might/could get better, or... my husband and I simply like to pretend that Dad is putting the whole thing on just to get away from my mother. :D ...6 yrs on and I guess deep down inside I just simply still 'don't believe it', don't want to believe it. :(

    I wish I was wrong, that he doesn't have this disease and isn't dying. Perhaps having to 'believe it' everyday for as long as this disease takes to destroy our loved one is just too much to handle? Maybe having that horrible thought for the past 6 yrs would have sunk me into an inescapable depression (as opposed to the one I do manage to escape on and off! :p ) Instead, I live for the 'I don't believe it' moments, even though logically I know it doesn't mean he will get better, just because for that moment I have him back and find the strength once more to carry on.

    I often worried about what I would do when I no longer had those moments with Dad, how would I carry on? But the thing is, the harder it becomes for him to show me that he is still there, the more power that one fleeting moment has. I guess I figure as long as he keeps doing the seemingly impossible, so can I. :rolleyes: :D
  12. Lulu

    Lulu Registered User

    Nov 28, 2004
    I too was beginning to think that all the activity in her life was helping her ..

    This morning, as she went off to Day Care, she looked as if she'd been dragged through a hedge backwards, jumper on back to front, not really understanding where she was going. It feels wrong to be sending her hither and thither, as she has no choice left. She does what I suggest, never complaining, never asking 'why?', when she should be doing only as she wishes after a lifetime of working hard.

    I'm told that she has enjoyed Day Care so far, and always tells me this is so once she gets back. I HATE what is happening to her, to all sufferers out there, to all carers out there.
  13. maggier

    maggier Registered User

    Jan 9, 2006
    Hi Lulu

    I totallay agree and understand how you feel about your mum just doing as she is told and not appearing to have an opinion of her own any more.

    My mum goes from standing her ground most vehemently (see my post on stopping her carers) to standing there like a toddler with her arms in the air while you pop her clothes on to help her get dressed and waiting for you to cut her food up for her to eat.

    It is a cruel cruel illness and sometimes I wonder if she would be better having a more physical illness, then at least she would UNDERSTAND what everyone is trying to do for her. I think this is what I find most difficult to come to terms with, that this is what MY MUM has become, she was always strong and she was the one who sorted out OUR problems not the other way round, she was the one who looked after people, she didn't ever need looking after herself. She made the most fantastic sunday roasts, plates piled high with food, (she is a Yorkshire Lass and proud of it) and if we brought other people home to eat it was no problem, just hitch up and make room for them.

    Now we have had to disconnect her cooker as she puts cereal in a bowl with milk, then puts the bowl on the hob to warm and cannot understand when we get upset about this and tell her not to do it.

    But we all have to take each new day as it comes and deal with the things that this illness throws at our loved ones (and indirectly throws at us carers too)

    At least, with TP, we KNOW WE ARE NOT ALONE!!

    Love and hugs to everyone and have a good weekend!!


    Maggie x x x
  14. Lulu

    Lulu Registered User

    Nov 28, 2004
    It has snowed today. Once upon a time, Mum walking me up to school in terrible blizzards, snow going over the top of my wellies, she making sure I was kept warm, sheltered ... Today, I made sure she had her hat and gloves on ....told her I'd be there when she came back.

    The Sunday roasts, yes! The roast potatoes with the beef and yorkshire puddings with the thick, dark gravy. Was it Family Favourites on the radio? Requests for BFPO? The rice pudding with the skin we children would fight over -everybody knows the skin is much, much nicer than the rice itself!

    We are having roast beef on Sunday. It's taken me a lifetime to get it anywhere near like hers. I hope everybody here enjoys a nice meal in Sunday.
  15. Lila13

    Lila13 Registered User

    Feb 24, 2006
    I wanted to have my mother's cooker removed while she was in hospital. But she's still using it, and of course I have no authority to have it removed. She's discovered the benefits of the microwave though. (You can teach an old dog a few new tricks.)

    (My brother wanted her to go straight from hospital to a nursing home. And not at all the sort of place which would be suitable for her as she is now. )

    She doesn't want red meat, gives her indigestion, (when she was refusing all food and drink the doctor recommended steak and kidney pudding and chips, which at least gave her a laugh, she wouldn't have eaten that even when she was well). But one sign of improvement is that she is now telling me which frozen meals to reorder, instead of relying on me to guess and then blaming me for guessing wrong.

    How important meals are when there is so little she wants to do in between them.
  16. Lynne

    Lynne Registered User

    Jun 3, 2005

    If the cooker is a gas one, and is unsafe, the gas inspector will condemn it and disconnect it (although they won't remove it for you). This happened to my Mum years ago. She never replaced it, as she was always afraid of gas anyway. The old cooker still stands there, oven used as an extra cupboard for pots & pans, top covered by a board on which stands a 2-ring electric 'hob' thing (+ microwave oven) This might be your answer; the gas inspector can take the blame.
  17. Lila13

    Lila13 Registered User

    Feb 24, 2006
    I don't know if it's really unsafe. Nor do I know if she will let a proper gas inspector in. Her gas appliances are maintained by someone whose mother she used to know ...

    She still uses it apparently. She cooks for my brother when he visits. All the time I've stayed there she hasn't cooked anything for me! we just heat things up in the microwave.

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