New to forum-mother just diagnosed

Discussion in 'ARCHIVE FORUM: Support discussions' started by ullrich, Jul 2, 2007.

  1. ullrich

    ullrich Registered User

    May 12, 2007
    Hello everyone

    I am new to the forum.I tried to post a message before but something went wrong.My mother has been recently diagnosed with Alz. And I am feeling very sad and am finding it difficult to cope.It seems to be a whole new world of things to do and I have finally obtained a place at an assessment centre for mum so hopefully everything will follow on from there.I kept being pushed from pillar to post and department to department but hopefully it will be sorted out now.I seem to be able to tell some people without crying but at other times I just breakdown.I know I have to be strong for mum and dad,since I know dad is feeling it too and of course he is with my mother 24 hours a day.This week has been particularly bad since she keeps saying she wants to go home to her old address in London and she takes all her clothes out of the cupboard and other things too like seeds and manure - has anyone else experienced this it is just so heartbreaking.I will sign of now as I am getting upset again.Can someone please reply,I assume someone else has been through the same.
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Welcome to TP ullrich.

    I have moved your post to a more appropriate section, where more people will read it.

    Having a dianosis of Alzheimers is heartbreaking and I feel for you and your father.

    However sad you are, I can see how much you are trying to help, by arranging an assessment and supporting your father.

    My husband keeps taking his clothes out of the wardrobe and packing them to go home too. It seems to be quite a common action for those who want to return to the security of their younger days.

    Please keep posting. You are among friends here.
  3. taylorcat

    taylorcat Registered User

    Jun 18, 2006
    Ullrich, I'm relatively new to this too but hopefully you'll get everything sorted soon. It is indeed a horrible disease and it's normal to get upset. I know I do. These forums are very helpful, I have had a lot of ideas and strength from them. My Mum also says she wants to go home quite a lot.

    Chin up.
  4. Sunlight

    Sunlight Registered User

    Feb 12, 2007
    Hi Ullrich. My mother was diagnosed about 20 months ago. In the beginning she was constantly packing her bags to go home but thankfully she seems to have stopped doing this. She still asks to go home and I just go along with her and then change the subject. Sometimes I look at her and wonder what is going on inside her head - it's really heartbreaking.
  5. Grommit

    Grommit Registered User

    Apr 26, 2006
    I do not know if this happens to all Alzheimers sufferers and I can only tell you what has happened in the case of my wife.

    She went through a period where she was packing and going home for about 12 months. Then gradually the packing stopped and she just burst into tears and wanted to go home.

    Recently even that behaviour has stopped as well.

    It was a very difficult thing to work through and I used all sorts of excuses to keep her in - the buses are on strike, your shoes need new laces, your nightie has not been ironed yet - anything that sprang to mind really.

    On the days she was off without packing , I used to walk round the streets with her until she had no idea where she was and then gently lead her home again.

    I do sympathise with anyone going through this stage as it is very distressing for the sufferer and more so for the carer.
  6. gill@anchorage5

    gill@anchorage5 Registered User

    Apr 29, 2007
    Going Home

    Hi Ullrich

    My Dad is currently in an assessment unit - but when he was home with us wanting to "go home as his folks would be worrying about him" was a daily occurrance which we dreaded as he would often get very anxious & upset. It was also very upsetting for Mum & for me - as during these periods he often didn't recognise us as being his family (i.e convinced he had never got married and never had children). He had no idea where his "other home" was, how to get there or who was expecting him - he just knew in his mind that he needed to be there. It must be so frightening for him - I've tried to imagine myself in the same situation and it must be an awful feeling.

    This would usually kick off daily about 4 p.m (almost as regular as clockwork) and the cue was always to look at his watch and say "is that the time? I need to get home." Sometimes this would last an hour or so - on a bad day it would go on for much, much longer.

    Our CPN advised that this is "classic sun-downing behaviour" & the only suggestion was to try to distract him. As most of us on here will know that is often much easier said than done, particularly if he is very upset.

    When the situation gets desparate I have been tempted to take Dad out in the car, drive for a few miles & bring him back to see if that works - but as yet have not tried it as our CPN warned me that this can backfire & he may be reluctant to go through the front door when he gets back!

    The best I have managed to do so far is give heaps of reassurance to him that everyone who needs to know - knows exactly where he is, because I've phoned "them" to let them know. I just have to hope he doesn't ask who I have phoned - because obviously I don't know who "they" are (little white lies can sometimes help!)

    It is so difficult & you really have my sympathy. If anyone has any suggestions of coping with this aspect of sundowning - I'd be very grateful for any ideas to try - for when he hopefully returns home following his assessment.

    Take care

    Gill x
  7. worrieddaughter

    worrieddaughter Registered User

    Jul 2, 2007
    Catch 22 - trying to support my mum

    My dad (65) was diagnosed about 18 months ago and although still in the early stages is getting increasingly bad. Lots of repetition, all he talks about is the weather on the phone etc. His is physically very fit, but now can't read or write. Very sad. Mum is coping well, but has lost her campanion, she is lonely and has this horrible feeling of guilt. Trying to cope with the constant repitition and not being able to have a proper conversation is taking it's toll.

    The main problem is that they always used to do everything together and now that mum wants timeout, dad can't understand and he makes her feel guilty. He can't stand the idea of her doing anything without her and starts to question her and asks if she still loves her etc.

    It's a horrible spiral effect as the more tired she gets the less she wants any confrontation. But she must have time out in order to be able to cope. Hence the catch 22 - if she tries to get time out then she has the consequences to bear.

    Any ideas?

    A miserable daughter!
  8. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Worried daughter

    Welcome to TP.

    I can understand why you are worried about your mum. I care for my husband alone, and it is very hard. He too has lost all language, cannot read or write, and conversation is virtually impossible.

    You are right that it is important for your mum to hve some time out, and a chance to meet people that she can have a normal conversation with.

    Has she had a carers assessment? If not, she should get in touch with social services and ask for one as a priority. Every carer is entitled to one.

    They can arrange for someone to come to the house to be with your dad to let your mum get out, or alternatively to take your dad out if your mum just wants a rest. They try to find a carer who will get on with the person, and they become a friend.

    They might also arrange for your dad to go to daycare perhaps one day a week.

    Your dad may not like this at first, but your mum will have to be firm. Her health is at stake, and she will not be able to continue caring if her health breaks down.

    You are going to have to be very strong for them both, and make sure your mum gets the help she needs. I was almost at breaking point when I had my first assessment, but the help has made such a difference to my life.

    Please give it a try, and let us know how it goes.

    best wishes,
  9. worrieddaughter

    worrieddaughter Registered User

    Jul 2, 2007
    Dear Hazel

    What a great forum this is - instant words of support.

    Trouble is my dad is an awkward man!! He would not entertain the idea of having anyone strange in the house. I've tried to tell mum to call in some favours and lean on some local friends. I'm 2.5 hours away so it makes it tricky. His response to most things is "I shall die if I can't.................."

    Mum also has ME, and although this has strengthened her, she gets very tired. And as we all know, the more tired you get, the less you can envisage yourself getting out of the downward spirral.

    I'm going to set her up with her own user name etc, as I'm sure she would love to talk (or read!) about others.

    Thank you for your time Hazel

  10. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    That's a really good idea. I'm sure it will be good for your mum to come and have a virtual chat. It's a life-saver for me.
  11. jeanierec

    jeanierec Registered User

    May 7, 2007
    north yorkshire
    Hi Ullrich

    Just wanted to say hello and offer my support.

    My mum also has only been diagnosed about 2 months ago , I could so identify with what you were saying about crying . I could talk to my friends about anything and everything but as soon as the conversation got round to Mum I would just dissolve into tears.

    I was a total mess for the first few weeks but in retrospect I think its something we all have to go through one way or another and believe me you will come out the other side and feel stronger and more able to cope.....I did though I never thought I would and beat myself up for not being strong etc.

    Jeanie x
  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    worrieddaughter, Hi.

    Do try to get your mum onto TP, she`ll get so much from it.

    My husband, like your dad, won`t have people in to help. I`m his sole carer, and although he doesn`t mind if I go out, he gets very anxious, in case I have an accident, and very lonely, so I`d feel guilty.

    I think it would help your mum to realize how much we share, and help give her some contact with fellow carers.

    Take care
  13. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    West Sussex
    Hello worrieddaughter.

    You sound like a lovely person trying hard to help your parents, I bet your Mum and Dad are very proud of you.

    Take good care of each other.

  14. Lucille

    Lucille Registered User

    Sep 10, 2005
    Hello worrieddaughter

    I can empathise with your comments above. My mum was exactly the same at the outset. We had to take a softly, softly approach with getting carers to go in. (I achieved this with help from mum's CPN and SS). Mum also said something similar about dying if she was stopped from doing something or the prospect of any outside help.

    This disease sucks. From my mum's point of view, she seems happy for me to "do" for her - occasionally saying thank you but mostly reading and re-reading and re-reading the paper. Shouting out headlines I've heard before. We did try getting the carers to do a bit of cleaning but mum would have none of it. However, she does allow them in (for med dispensing) and has an OT once a fortnight. Like you, I don't live close by. (We're trying to persuade her to go to day care, but again, as far as she's concerned I should be providing stimulation or she'll find it herself, because there's "nothing wrong with her, barring a bit of a memory problem which she'll get over." If only that were true. It's heartbreaking. Persevere, that's all you can do and support your mum. But you are doing as much as you can. Unfortunately we're not dealing with a disease that allows the sufferer to be rational and I, personally, have found that one of the most difficult things to have to accept.

    Keep posting. This place will keep you sane!

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