In search of mutual understanding and support

Discussion in 'ARCHIVE FORUM: Support discussions' started by Short girl, Apr 6, 2008.

  1. Short girl

    Short girl Registered User

    Mar 22, 2008
    Hello, I'm new to this forum and don't know where to start, the advice said a new thread, so here goes.
    My Nan who is 88 years of age has recently been diagnosed with Alzheimers (mild) which was an initial shock but looking back since around 2005/6 the signs have been there. I am in the position in that I'm the only nearest family member she has and therefore the only real support. I work in an older people's team so am very aware of services etc etc, but the realisation is that when it's your own, it's a whole different ball game. I've got her all her entitlement etc, got in what I think is appropriate care at home and have just sent the Enduring Power of Attorney off for registration - that side I'm handling, the emotional is different. My Nan started on her prescribed Galantamine XL last week and the side effects were quite adverse - something I was dreading and expecting because she simply does not eat enough and when she does it's cakes (she can still get to sainsbury amazingly!) - she was really bad yesterday, her carer rang concerned and she was very drowsy, unresponsive, low in mood and complained of feeling nausious + could see she was dehydrated - I had to practically bully her to drink water and I admit I nearly snapped when I tried to persuade her to eat some of her meal (the mash & gravy bit thinking that bit goes down easy) Got medical advice and told I was doing right thing and not to give her the pill (will seek CPN advice on Mon). I didn't want her ending up in Hospital bascially. Today she was a little better and flatly refusing to continue with the pills - can't say I blame her.
    The fact that I am the only member of family to support her gets me sometimes - my uncle lives in Canada and hasn't seen her since 2005 and if he saw her now he'd be shocked at her deterioration - my Aunt lives in Manchester, sees her about 3 times a year, not greatly supportive and has depression and can't handle her. I do e-mail them regularly so they know what's going on. Oh my mum died in 2002 - had she been here she would have had this, but with my support - my step dad used to sort her finances out but as she got worse, he backed off and it was left to me - wished he'd just told me - had to keep asking about getting me the copy of the will etc - got it all now.
    Just after soon mutual support and understanding as there must to lots of you in similiar situations as myself - I work full time too and have a son of 9 - the whole situation puts a real strain on my marriage at times - oh and I'm premenstral right now. Oh and when I don't feel quite so bad as this and my head's straight I can offer many of you support and advice too I'm sure.:eek:
  2. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    Hi there,
    It does sound like you're doing all the things you need to be doing. I don't have anything to give except moral support and hugs.
  3. Short girl

    Short girl Registered User

    Mar 22, 2008
    Hi Joanne

    Many thanks for those words.:)
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hello and welcome to Talking Point [TP].

    You certainly have chosen the best place to come to for support. Everyone here has a different story to tell, but when you take away all the outer layers, the stories are the same.

    It`s good you have so much in place, you have managed so well.

    The side effects of drugs are very difficult to handle as you feel duty bound to give them a fair trial before asking for them to be stopped.

    The emotional strain is ongoing and there is no answer, not from me anyway. It is such an upsetting condition and there really is no way out. The only help is on a website like this where you can feel free to off load, share your story and your fears and anxieties, and everyone will understand.

    I do hope you get the support you ask for. I can almost guarantee you will.

    Take care xx
  5. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    Well done short girl ... :) the ability to be honest about ourselves and what we can and can't cope with on any given day is a good start ..... with a dash of candid humour it's about the best weapon I have found in this struggle ..... (I find the combination of premenstrual and peri-menopausal would give the worst teenage bag of hormones a run for their money on certain days!!!! :rolleyes:)

    More seriously, I struggle too with lack of either close or even extended family around to support me in supporting mum .... but from what I have learnt on TP - having family around does not necessarily negate the splendid isolation experienced by so many carers ..... and in fact - even seems to make matters worse at times????? Then again juggling other responsibilites (like simply holding down a job or caring for your own offspring!) ... can seem impossible at times ......

    Why, I confess TP has often been my 'emotional crutch' many times 24/7 over the last couple of years ....... a very long-winded way of saying 'Welcome',

    Love, Karen, x
  6. hendy

    hendy Registered User

    Feb 20, 2008
    West Yorkshire
    Dear Short Girl
    I am sorry to have to say it, but welcome to the club!! I think your story does have a plenty in common with lots of others on TP. Just because you've got family, it doesn't necessarily mean the support comes with it. We often hear about families coming together at these times,but often the reverse is true. It is common that close relatives can find excuses why they are unable to do this, that and the other. I think its worse when other family members judge and criticise, this also happens to carers sometimes.
    I think you deserve a big pat on the back for sorting your Nan so well. Your Nan is lucky to have you as a granddaughter. You've come to the right place, because caring for someone with dementia is a long haul journey. We all need the emotional and practical back up that TP can give us.
    take care
  7. lesmisralbles

    lesmisralbles Account Closed

    Nov 23, 2007
    Dear Shory Girl

    I know I could have not got through the past month's without all my Pal's on TP.
    Post as much as you need, there will alway's be someone to help.
    Barb & Ron X
  8. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    Hi and welcome

    I agree over the PMT bit. You can cope with most things for 3 weeks of the the fourth it just gets to you!!!!

    Welcome. It is not an easy road that you are on but I am sure your Mum would be proud of you. I bet that you miss her.

    You are doing all the right things and you can do no more. You will find a balance but my motto in the last few years has been "no regrets".

    Here you will find lots of support


  9. Lucille

    Lucille Registered User

    Sep 10, 2005

    Hello Short Girl and welcome.

    Sorry you're here, but you're in the right place. They are a good bunch of people (most of the time :D:D) But watch out for Tender Face, "Pre-Menstrual and Peri-Menopausal" ... scary!:D Hello Karen!:)

    Post as often or as little as you like. You are amongst friends, and as carers we are all aware of the ups and downs (mostly downs, I'm afraid) of looking after someone with this awful illness.

    You sound as if you're on the ball with the practicalities, but I agree, the emotional side of things is often tricky when trying to manage your own life and other responsibilities. When to yell? When to cry? When to laugh?

    Keep us posted on how things are going. Someone will always reply.

    Take care
  10. andrear

    andrear Registered User

    Feb 13, 2008
    Hi Short Girl and Welcome

    I am in a similar situation to you, but its not my nan, its my dad. I have had to give up work and feel frustrated much of the time with nobody else wanting, or indeed offering any help within the family. My husband helps me out as much as he can, but he is now the breadwinner, and indeed has just had an operation and is still in hospital. And I'm having hot flushes constantly at present and am really dreading the summer cos' I know last year was bad with the flushes and having to change my clothing many times a day!!!!
    But it does get better - because now, like me you have this site to come to. I have found lots of people who I really do consider to be my 'online friends'. And with their help and support I really don't know where I would be, because I really was at the end of my tether.
    Post as much, or as little as you like, but you will get the support and sound advice you need.
  11. Short girl

    Short girl Registered User

    Mar 22, 2008
    I would just like to thank everyone here for all your mutual support, I've found what I am looking for in term of support and good humour.
    Spoke yesterday to Nan's neice to advise her of the news - bless her, she wants to come to see Nan in May (there's a guest room in the sheltered complex)and hopes to time it when I am on holiday (first one abroad in yonks) I have come across carers in my job and have really felt for them when something horrendous crops up with their elderly relative and they have no other choice than to cancel a booked holiday.
    Well today I became menstral - it was early!
    Spoke to the CPN re: the Galantamine - waiting to speak again as she was going to talk to the doctors - apparently 8mg is the smallest dose. 3 years ago she got put on an anti-depressant and the side effects were so advserse she decided not to take them and then felt better!:cool:
  12. Lucille

    Lucille Registered User

    Sep 10, 2005
    Hello again Short Girl

    Glad you feel like you're making some progress with things - especially if you can fix up care for when you're on holiday. You deserve a break. Keep us posted ... and if you do go away, post in the team room any holiday anecdotes! :)

    Take care and I hope the Galantamine issue is sorted out soon. I can't offer any experiences of it, but am sure someone else can.

  13. Short girl

    Short girl Registered User

    Mar 22, 2008
    New Drug

    I'm feeling better already since joining TP, so much so I've been recommending to others oh and my period has arrived and the hormones have settled and the headaches subsided. Nan brighter too when I popped into her last night - on my way out to a Thai meal with my best mate, had lovely time and meal!! Day off work tomorrow to spend with my son.
    Anyway Nan's been given Aricept - I've post another thread about advice re; side effects.
    I see some of you on here are in what appears to be a far worse situatin than myself, i'm most humbled!

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