do you recognise this scenario?

Discussion in 'ARCHIVE FORUM: Support discussions' started by Lulu, Jul 3, 2005.

  1. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    I hadn't expected to be writing again with another problem quite so soon -even now, in the back of my mind I still secretly believe that Mum will be different, and not get any worse. However...

    Mum was here for her meal this evening as usual (I do all her cooking), and she was looking particularly down in the dumps. I wasn't at all prepared for her reply to my question, 'what's the matter?'. She told me that she was utterly fed up. She hadn't seen a soul all day, never does, that it was too quiet, that she wanted to move back to her home town and live with her sister. Her sister would look after her, and she would sell the home here which she has only just purchased!

    I could not believe what I was hearing! She had begged me to find her something close to me, and we have been very fortunate in doing so. I could see that she couldn't cope alone, and I am pretty sure that she would not be alive today had she been fending for herself this last year since Dad died.

    The thing is, only last week I was saying to my husband that even a morning's trip to the supermarket seems to overwhelm her. I try to amuse her, find things to do, but so much causes her distress. Either she is stressed out by 'too much', (which isn't very much at all), or she feels bored with nothing going on. Last week, she has had her neighbours calling in, several times a day, I have arranged a supper to have with a close neighbour, she has been on a walk, she has done this, done that .....but all is forgotten as soon as it's over, isn't it? She can't remember that she has been so occupied!

    I have arranged for her sister to come and spend a few days with her this week. If she says the same things to her, I can imagine the uproar! Everyone thought she should have stayed put in her own home, that she was just grieving, and nobody believed the diagnosis of AD. I am panicking, feel very upset. Here I am trying to make everything right for her .............Please, has anyone been through this? Will it all have gone away by tomorrow?

    I couldn't cope if she carries on with this ...not after the year we've just had. Perhaps I should go to see her GP? We're not due back at the clinic till October.
     
  2. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi Lulu, I think a chat with her GP and with the clinic would be enlightening for your aunt. After all, if there is uproar and your Mum wants to move back, she needs to know what she is going to be in for. I think you may well find that once she is aware of the facts, your aunt will not be quite so keen to be the one left holding the problem. Having said that, yes it could be a storm in a teacup as far as your Mum is concerned and soon forgotten. It would still not do any harm to have the professionals fill your aunt in a bit though would it? Love She. XX
     
  3. daughter

    daughter Registered User

    Mar 16, 2005
    824
    I wish I could say it will go away. Hang on in there Lulu.

    While trying so hard to keep your Mum occupied, you have begun to realise that it is impossible to keep this up every minute without wearing yourself out! Sometimes, instead, you can use a sympathetic 'never mind' or a jolly 'we'll do such and such after a cup of tea' and ignore the tantrum. If you think about a child saying "I'm bored" you wouldn't necessarily offer countless activities. Sometimes you just have to 'let them get on with it' (not unkindly) and not least for your own health! As your Mum soon forgets being occupied she may also soon forget that she was bored.

    When your Mum's sister comes to stay it is probable that she will spot some changes in your Mum. Even if your Mum manages to put on a front to others, living in the same house there is more likelihood that something will seem amiss.

    Hope tomorrow is a little easier for you,

    Best wishes,
     
  4. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi Lulu,

    I think you’re dealing with some of the really challenging aspects of AD. Firstly, you’re trying to help your mother to live as “normal” a life as possible, on her own but with your constant support. Secondly, your mother is at a stage where she has lost a lot of her own initiative, planning skills and abilities to engage in new and possibly even some familiar activities. Finally, other members of your family don’t share your insights into your mother’s condition, nor does it sound as if she has a great deal of self-insight (or perhaps she does in a more general sense – such as being fearful to go out in case she got lost).

    You are doing such a good job of supporting your mother that it is probably not clear to her or others how little she is capable of doing for herself. This type of creative support is hard to do so skilfully that it does not undermine the person with AD’s sense of self-confidence. So, if it’s any consolation, you are a victim of your own success. Along this line, you might want to get a copy of a book called Learning to Speak Alzheimer’s by Joanne Koenig-Coste. She was a care-partner (her term) for her husband who had early-onset AD some 25 years ago or so, before most people even knew about AD.

    One practical tip regarding your mum’s activities and visitors. Our social worker advised keeping a desk diary or visitors book in my in-laws house and suggested that everyone coming in to the house sign it. The idea was to help my mother-in-law, who looks after my father-in-law, keep track of all the AD-related visitors (occupational therapists, social workers, nurses, etc.). The trick here is to do it in such as way that your mother would find it a helpful a reminder of who had been to visit and what plans she had for the week.

    You may think that your mother isn’t ready for this yet, but have you looked into day centres in your area? There may be a good one nearby that could offer your mother some level of diversion one or two days a week.

    As for wanting to return to her home town, this could be a natural emotional response to the need to feel safe and secure in a familiar (or a place remembered as familiar) place. The problem is that this can be a rather nostalgic idea rather than a practical one – didn’t you say that she got lost in her home town? Of course, people with much more advanced AD want to return to their childhood homes which they remember perfectly.

    I think inviting your aunt to stay with your mum for several days could be a very instructive experience. Your mother is still socially conscious enough to get by in certain situations, but living together for several days is a much more challenging proposition. As daughter(Hazel) said, your aunt may soon see that something is indeed amiss.

    Take care,

    Sandy
     
  5. Jude

    Jude Registered User

    Dear Lulu,

    My father's main complaints during the past years have been a lack of visits from friends and family; boredom; not going out on trips, etc. He is continually expressing a wish to return 'home' to a variety of places where we have lived. Yesterday he was talking about going home to Hazelmere, where he lived as a child....

    Sadly, like your mother, he doesn't remember all the trips out and the visits from friends.

    It's a pretty ususal scenario for AD sufferers. I feel it's probably a wish to return to a pre-AD state where life was routine, dependable and safe.

    You are doing the right thing. There is no going back. Perhaps it might be useful for your Aunt to read these posts in order to help her understand the situation.

    Jude
     
  6. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    I think that "I'm bored" can often be read as another way of saying "I can't seem to concentrate" or "I want to do something but don't seem to be able".

    Jan would sit for hours reading and re-reading the first paragraph on a page, trying to make sense of it. Even if it was just a sentence long, she would forget how it started, so read it over, and then forget again. For someone who once read a great deal, and who learned scripts while on the stage, and memorised long pieces of music.......ah well.

    But "I'm bored" doesn't mean "I want some activities arranged to absorb me" - at least not necessarily.

    Sometimes activities of any sort, watching TV, shopping, walking, only serve to remind them that there is something not right about their world. That's when it all becomes "too much".

    And the greatest pain is that we can do nothing to help with that, because they are correct. All we can do is our best to ease things.

    Sometimes that means agreeing with just about anything, telling untruths, telling them it is us being strange,...etc whatever fits the bill in a very unreal world.
     
  7. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    That is a very good idea. If there is any hint of 'trouble', I can just refer people to the Clinic can't I? I haven't the time any more to be explaining over and over to people, and no longer do I wish to have the burden of fearing what they will say or think if Mum starts to tell them how unhappy she is here. My aunt coming to stay is purely coincidental -it was all arranged before all this blew up, and Aunt doesn't have the slightest idea (yet!) that Mum wishes to move in with her! In fact, I am wondering if all this in reaction to a visit which Mum knows is going to 'test' her, put her on the spot a bit more, show up her problems for what they are? She will have to be alone with her sister. What if her sister asks questions? Perhaps this is the root of it.

    I am going to make an appointment for me to talk alone to her GP -if they will let me do this - and see if they think she is ready for a Day Centre of some kind, once or twice a week. There are a million and one things Mum could be doing, and along with the routine I 've got in place, this should be more than enough. But the housework is slipping (can't blame her for that though!), she could call on her neighbours, she could take a stroll .....but she won't do anything. I just get the feeling that she may well be ready for a Day Centre, so Sandy you were spot on there. Perhaps the GP will help with this? Can I look into this myself? When I last saw the Dist Nurse, she told me that the local Centre was full .... Age Concern have begun a Lunch Club locally, but it's more for the general elderly if you know what I mean. Mum's been once, but she relies on her neighbours going too, and looking after her. She really could do with something better geared to her condition?

    Just after Dad died, when we were discovering that Mum was unable to cope, she was telling me how lonely it was there, how quiet, never saw a soul. This was actually true as all her neighbours worked. She could have taken a walk up to her sisters, could have done a lot of other things, but of course she couldn't do these things just as she can't do them here.

    Again Sandy, I think (hope) that you are right. Perhaps my aunt will see how mum struggles along whilst she's staying with her.

    I shall order the book mentioned -think I've seen it mentioned elsewhere and had meant to get a copy, but time just goes, doesn't it?


    Mum has a big diary which I write in a week in advance so she knows the plan for any given day, and she could refer back or whatever -but she seems to be unable to take full advantage of it at times. I encourage her neighbours to write in it as well, which they felt awkard about doing at first but now they know how unreliable Mum's memory is.

    Hope you can follow all this. I can hardly get my thoughts in order myself. I awoke with churning stomach, and wonder how all this is going to turn out. Thanks for listening -think my husband is fed up of talking about my mother! Just as I thought we were doing OK, this happens. Why did it take me unawares, having been forewarned by this site?
     
  8. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    Hello. Sorry to have written so much! Today was awkward, Mum very subdued, not eating very much, telling me she's not hungry in a defiant sort of tone! I refer back to everyone's posts in spare moments as they have all made such sense, and are absolutely spot on. Thankyou. You all understand exactly!
    I have left a message with the DN who has visited us before, asking to contact me. I have a list of questions, such as how to find a day centre. Depending on what she says, I shall then see Mum's GP. The book is on order Sandy.
    I may as well get the next thing off my chest too whilst I'm here. How can I ask MUm to have a wash all over when she takes a bath, without upsetting her? If someone said this to me, I'd be pretty upset! I 'steal' her nightie every so often as it gets so grubby as she never thinks to wash it (she washes her towels and underwear, but never the nightie). As if she sits in the bath but doesn't wash her upper half. Do you have any suggestions?
    Many many thanks. Aunt arrives tomorrow.
     
  9. Jude

    Jude Registered User

    Hi Lulu,

    You don't mention if you are allowed into the bathroom when your mother is bathing. If so, then things will be a bit easier to organise. If not, then you could knock on the door and just 'pop in' with some fresh towels and help out a bit. Perhaps you could also offer to help wash her hair at the same time?

    How about buying a nice scented bubble bath, new sponge and back scrubbing brush for a real bath 'treat'? This might encourage her to wash more thoroughly and would turn her bathing into an 'event'.

    Hope this helps a bit.

    Jude
     
  10. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    #10 connie, Jul 4, 2005
    Last edited: Jul 5, 2005
    Heartily endorse Bruce's comments. As usual he seems to be 'spot on'

    I have taken to walking into the shower room when Lionel is in there, much on Jude's llnes. I say things like, 'did you forget this towel' and then, "would you like me to sponge down your back ect" It does not always work, but as he does not remember yesterday, it is only me who is left feeling bemused.

    I think we think too much. Sometimes just do it. Their memory is not as good as ours, so hurt feelings do not last as long. I am not saying abuse their feelings, but do what your conscience dictates. Regards to all, (it's a minefield out there) Connie
     
  11. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Connie,

    I liked your comment "I think we think too much. Sometimes just do it."

    It is so true, and I have moved it out of the dementia sphere since seeing its truth with Jan.

    If a fleeting thought comes into my mind to do something for someone, then I just do it. No time to think again, life is really too short. Too many people think too much about too many things, and end up doing nowt about anything, for fear of doing something wrong.

    Bending phrases..."better to have tried and failed than to have realised later you should have done it before and now it is too late"

    ...now I'm off to bed to think what the hell that means...:)
     
  12. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Hi Lulu,

    Glad that there are lot's of us chipping in on this thread - so many important issues to explore. Also glad you ordered the book - I hope you will find it useful and reassuring.

    I think making a list of questions for the nurse is a good idea, as is a follow-up meeting with the GP where you can explore some issues more openly without worrying how it might affect your mother. Has your mother been assessed for depression? Given the recent loss of your father and her overall change in circumstances, it might be worth keeping it in mind.

    Have you had an assessment from Social Services yet? A good social worker can be a really valuable source of advice on local services and can arrange things like day centres and home care assistants (if this becomes necessary at some time in the future), etc. Also, you might contact the Alzheimer's Society helpline to see what services are availale in your area.

    By the way, have you applied for any benefits, such as attendance allowance? We applied for that benefit for my father-in-law and it really was quite straight forward and not means-tested. The Society has a fact sheet on benefits here:

    http://www.alzheimers.org.uk/After_diagnosis/Sorting_out_your_money/info_welfare.htm

    I agree with Jude about the bathing situation. With the AD it's hard to create new routines, they just don't seem to stick. But using the right "props" like a new bath sponge, back brush or bath pillow might "rekindle" that feeling of wanting to lie back in luxury. It might also be good if you could be onhand when she's bathing just once to make sure there isn't anything (mental or physical) that's preventing her from doing a thorough job - such as a fear of lying back or slipping, or not being able to move comfortably.

    Hope all goes well with the Aunt's visit - ideally they can have a good time together AND her sister can see how things really are.

    Take care,

    Sandy
     
  13. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Goodnight Bruce.........Connie
     
  14. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    Mum lives alone, but not far away. We moved her close to us after Dad died as the GP told us the sooner she moved the better, whilst she was still capable. I just didn't know how to go about reminding her of the need to wash -most other things I have been able to get away with. Like you say, just doing whatever is necessary is the best strategy. I do this in a matter-of-fact manner, as if it's all routine and normal, and Mum accepts that, no questions. I shall try some bathtime 'props' ....thanks for that.

    Sandy, yes saw a Social Worker some months ago, who set us up with their Voucher Scheme, and we get Attendance Allowance. The DN is coming to talk to us on Monday, when I shall ask about Day Centres. I also wonder how much longer Mum can go on living alone?

    Aunt is now here! Mum has been under a huge amount of pressure leading up to this -which I now belive may well have brought on our little 'crisis' about moving back to her home town. We decided to ignore her, and we haven't mentioned it again, but we'll see if she mentions it to her sister. I think she will find out how much Mum struggles day to day. As much as I want to protect her, I also want to let someone else see what is happening.

    Thanks for listening.
     
  15. Jude

    Jude Registered User

    Dear Lulu,

    Good luck with Aunt's visit. I'm sure she won't fail to notice significant changes over the next few days.

    Best wishes,

    Jude
     
  16. Sandy

    Sandy Registered User

    Mar 23, 2005
    6,847
    Dear Lulu,

    I hope you and your mum enjoy your Aunt's visit. If she is able to see how things really stand, perhaps she can help you get the other members of the family on side.

    Take care,

    Sandy
     
  17. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Lulu, you sum it up in your last couple of lines. We all seem to do this in the early stages, cover for them etc. But there comes a point when you have to let others into the "secret" my Mum's sister denied it for a while, but when she too came to stay for a few days, she soon got the picture. Try to be gentle with yourself, you do a grand job you know. Love She. XX
     
  18. Geraldine

    Geraldine Registered User

    Oct 17, 2003
    143
    Nottingham
    Sorry Lulu

    Can only re-iterate what others have said. After a whole day of activities, lunch, shopping, friends visits (me at the point of exhuastion!) Mum (sadly now deceased)would often say that she had not done anything or seen anyone for weeks!

    I think whatever we do will never be enough - there is no memory left - and probably all of the above would have had the same effect if Mum had been sitting on her own day after day.

    Sometimes now after a day at home with just the cleaning and daytime telly and my son coming home later than usual, I think to myself this is what my Mum percieved it was like all the time and its a horrible thought. Its a horrible desease, all we can do is the best we can. And when our best is not enough we need to pass the caring duties on to those who have the energy to carry on where we left off.

    regards

    Geraldine
     
  19. daughter

    daughter Registered User

    Mar 16, 2005
    824
    You are absolutely spot on Geraldine. I hope the visit is going well Lulu.
     
  20. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    I feel well and truly supported. Thank you. I think I am also going to learn one or two things in the next couple of days also. Her sister is also learning, and I will hopefully have a chance to talk to her later on.
    Exactly. I am just coming around to the fact that even if I am with Mum 24hrs a day, taking her here, there, everywhere -it is all meaningless! This is why I believe she is now ready for further care. Then in the near future, I am going to start looking into care homes -something I'll ask about on Monday
    I will keep you informed. Thank you so much everyone. This gets things off my chest almost as soon as things happen, which stops things buiding up.
     

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