just need to stay in touch more than anything

Discussion in 'ARCHIVE FORUM: Support discussions' started by Lulu, Nov 15, 2005.

  1. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    Just to say hello to people who understand. I hate to stay away for too long, as you are my support system! I have now managed (after quite some time) to jump the particular hurdle which was worrying me a lot. Mum has been forgetting to wash etc, and though she now has her new double shower, still she wasn't aware of what she had to do. I went up first thing this morning, suggested to her that she may like to try a shower whilst I was there. She agreed, and followed like a lamb. Whilst she was in the shower, i laid out a lovely new sweater etc, and then she did her hair with mousse and rollers, once I'd shown her where it all was again. She looked wonderful.

    That was a difficult thing for me .....

    Meanwhile she is still suffering from this head cold which I believe may be a side effect of her Aricept. She also seems to be feeling cold, almost shivery, despite her heating being on, plus her gas fire. The letter I wrote to the Dr prior to the last appt at the Memory Clinic was 'lost', and the one I sent afterwards, 3 weeks ago, has had no response. We see her GP on Friday for a review, and so hope to speak to him again about it. I am beginning to feel that perhaps this is all just a manifestation of the disease process. Has anyone had similar experiences as the disease has progressed?

    It felt good today though, because she looked so clean and cuddly. Sorry if I'm a nuisance, telling you all this. Noboby else in the family wold think to phone to find out how she is. I have tried phonng them, but to no avail. If I didn't phone, they woldn't phone me ...it hurts sometimes, but then they don't undertand.
     
  2. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    Lulu, 'they don't understand' because they are not there to see what it's like, which is hard for you. It also means that you are unable to share the good moments (like the shower etc), which are so important.
    These little successes keep me going, and I work towards the next one, even if the 'success' means more to me than my hubby. He always used to be so very particular about his personal care and appearance, now he has forgotten what a 'bath' and 'shower' are, and I find it difficult to step back and adjust my thinking.

    Well done for today, you and your Mum seem to be a good team.
     
  3. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi Lulu, its these little things that mean a lot. We certainly do understand just how pleased your Mum being so clean and cuddly would make you. If the rest of the family fail to understand, it can be very frustrating because you feel they are not taking in anything you tell them. As Nan says, its good to be able to share these things. The goal posts change constantly in dementia world, all you can do is go with the flow, do your best and try not to worry about things you can't change. Love She. XX
     
  4. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Hi Lulu
    glad the shower is ok.
    It is the best thing we ever did,you will think the same.
    Lulu you are not a nuisance,don't you dare say that again,post whenever you feel the need to talk,we are here for you
    Norman
     
  5. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Hello Lulu, can understand your feelings, thank you for sharing them with us.
    You do such a wonderful job with your Mum, and the rest of the family are the ones missing out. These times can never be recaptured. Make the most of the 'good' moments. Thinking of you, Connie
     
  6. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Lulu,
    I am sure no-one here at TP would ever think you are a nuisance, whether you want to tell us about a down :( day or, more happily, an Up :) day. You are coping marvellously - unlike, it seems, 'the professionals' with whom you have to deal.
    Well done you, and as everyone else has said, treasure the good days and the successes. Perhaps even write them in a diary, as the things you may want to remember.
    Best wishes
     
  7. Hugh

    Hugh Registered User

    Sep 23, 2005
    25
    Well done Lulu

    You are a real rock for your Mum and even if she may sometimes not say so or show it she will feel that amazing feeling of love, care, warmth and safety which I am just beginning to learn are some of the most precious gifts any carer can give a relative with AD. These times with your Mum - yes often they will be hard for you, so get on the line to TP for support if you wish - but they are unique and quality time which your Mum and you will always treasure, whatever happens. More power to your elbow Lulu, we know a bit about where you are and are there for you. x Hugh :eek:
     
  8. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    Thank you all for being here ..it is all so emotional, up and down, all the time.

    I have another shower planned for tomorrow! Then she will look her best for going out to her 'Group'. This is run by the AS and she really enjoys going! I could do with another session of something similar in the week as she has become so apathetic and does very little. Will speak to the GP about it on Friday. At what point is Day care considered?

    I do have this need to talk over every little thing, and do keep trying the family, as they also know Mum. I try to give them the picture in an upbeat way, as well as telling it how it is, but the usual response is, 'well I'm sure you knew what you were taking on'.

    Well thanks again, and Norman, I'd give you a tour of the shower room if I could! It's amazing. Lulu
     
  9. blue sea

    blue sea Registered User

    Aug 24, 2005
    270
    England
    Hi lulu

    Thanks for sharing the good feeling of the successful shower. As others have said it is these moments which mean so much and keep carers going. Try not to to let family get to you. Their wish to avoid involvement probably stems from a feeling of guilt that you are doing so much and inadequacy in the face of this illness. In their eyes the less they are told the more they can block out the terrible reality and knowledge that they should be helping. Anyway you sound as if you're doing a brilliant job. Regarding your queries, my own experience with dad is that he is now ultra sensitive to the cold - abnormally so. He can't bear a window open, even on a hot day. He particularly hates being undressed, bathed and changed and part of this seems to be that he feels so cold without his clothes. Your day care query - I think basically it is considered when you as the carer start to insist it's needed. if your mum is willing to go it would probably help her in terms of stimulation and company and would help take some of the pressure off you. As dementia progresses it gets very difficult to get the person to accept going to new places, so it is a good idea to get your mum settled with such routines as early as possible.

    Keep posting - it helps us all to share experiences.

    Blue sea
     
  10. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    Thanks for that, Blue Sea.

    This morning she had turned her radiators up to maximum, and had then opened the windows to get some air! I wonder if the part of the brain which controls temperature is affected in the process, so causing these problems. Dad always felt the cold, was never warm, whilst Mum never felt the cold! She's completely the opposite now.

    I did ask Mum today if she would like to go to another 'group' such as the AS one she attends once a week, if there were such a group, and she said yes, she'd like that. I'm really surprised that she fits in so well there as the others seem to be so much worse than Mum, yet she doesn't put two and two together. It has caused me more upset than it has her! My theory is that she feels very comfortable there -no hard questions asked of her, all at a level she can cope with. It would be so much better for her to attend something similar in the week.

    Well thank you once again. How I wish I could give out as much as I take. Lulu
     
  11. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    ... we're like the tides. We all ebb and flow.

    Today one person helps another person. The next that person helps them. That's what keeps us all going.

    There's a line from "The King and I": "Buddha make a miracle"

    Sums it up.
     
  12. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hiya, day care, I think its basically when you start asking for it and the sufferer will tolerate going, least thats how it was for us. Love She.XX
     
  13. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Lulu, press for day care now. It seems as if your mum will be receptive to this. As Bluesea says "earlier the better really" as this does help them to settle. Good luck. Connie
     
  14. daughter

    daughter Registered User

    Mar 16, 2005
    824
    Hi Lulu,

    Dad's hands are nearly always cold in the winter months, so he does feel the cold more but, even in the Summer, when we take him outside for a walk and there is a slight breeze he says it is cold. It almost as if his brain is saying: wind blowing = cold.

    Glad to hear about your success with the shower room.
     
  15. Claire

    Claire Registered User

    Mar 31, 2004
    88
    Coventry
    Hi Lulu

    I had a similar experience with my Mum. It seemed strange at first supervising her shower, but she had no problems with it at all. She also had problems with temperature control - either being very cold or very hot. That seems to have passed now, though. As to day care, it was a godsend for me, as I work full time. We started with two days a week at a general day centre, but they soon said they couldn't cope with her needs, and a place was found in a specialist centre for people with dementia. She started there for 5 days a week, which rose to six a couple of months later when they had a weekend vacancy (my job involves alternate Saturday work). She really enjoyed the centre, and I knew she was safe when I couldn't be there for her. There were outings - pub lunches, canal boat cruises etc, lots of music, dancing, craft work. I feel we were lucky to get such a level of support, and it made a huge difference.

    Take care of yourself, as well as Mum.

    Claire
     
  16. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    Thanks for that, Claire. The Day Care centre sounds wonderful -just what I'd like for Mum, but have never heard of such a place locally. It isn't that I want to palm her off onto someone else, which is how the Authorities make me feel when I broach the subject. I want her to be usefully occupied, in a manner she enjoys (such as the afternoon group run by the AS), but am unsure as to what is out there for us.

    I don't go out to work any more, and I feel guilty that I think along the lines of sending her anywhere, as I could see to all her needs in theory -except that I can't. My children are late teens/ young adults but even so I hardly ever give them a thought at the moment, can't visit them at Uni, arrange meals out with them, shopping trips with my daughters etc -because it is a full time job ensuring all Mum's needs are met.

    Well, a quick lunch now and then we go to see the GP for a review of her medication, when I shall ask him about it all. Thanks .
     
  17. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Claire,
    It sounds as if the Day care available in your area is brilliant - it's so reassuring to read the ones which DO work out for people, as a counter-point to the many examples (unfortunately) where some carers seem to be knocking their heads against brick walls!

    A thought: perhaps we (here) hear about MORE bad examples, because the families who are desperately searching for some sort of support end up here, whereas those who GET good support locally never get this far ... ? I hope that's the case, anyway (trying to be upbeat and "the glass is half full")
     

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