First Post - suddenly overwhelmed - Very long post, sorry

Discussion in 'ARCHIVE FORUM: Support discussions' started by Windfall, Sep 13, 2006.

  1. Windfall

    Windfall Registered User

    Oct 18, 2005
    12
    Hampshire
    Not sure where to start really, I've been a lurker here for some time and have taken a great deal of comfort from you all. I felt it was probably time to come out of the closet and introduce myself. I think I've probably been in denial and for no reason today things seem to have caught up.

    I live in Hampshire with my husband and two children. My mum was diagnosed with Alzheimers last summer (05). She was living fairly close by with her 86 year old partner and between them they could manage quite well. However, things came to a head last Oct, Alf suddenly couldn't cope so I had mum for a week. The days weren't so bad but the nights were truly awful and I, for the first time, had to confront just what this disease means. It became clear that they couldn't continue to live as they had been but she wasn't really bad enough for a nursing home. We were very lucky, I have a brother who lives in Swindon, Wilts. He had heard of a new type of home that had just opened close to his home. It's run by The Methodist Homes for the Aged (am I allowed to say that?) and consists of 14 independantly owned flats which are wholly supported by the nursing home attached. The ethos of the place is to keep couples together where one of the couple has dementia, there are staff 24/7 to support the carer and it is a lovely place. We were lucky, in at the start, we had a choice of flats, another family member was able to supply the funding so we didn't have to sell to buy and within 6 weeks we had them moved in.

    Mum is very happy in her new home, she thinks she's in a hotel, can't really associate that it's hers but loves the staff - and they seem to love her too, she is really very biddable (a complete change in personality she had always been quite a formidable woman) and smiley most of the time. Alf, however hates it. Always wants to take her out, complains all the time. I do understand, mostly what he is complaining about is that she has Alzheimer's and that he is having to watch her deteriorate (he nursed his first wife through terminal cancer) it's just so hard to be on the end of his constant tirade when we are trying to do the best for them both.

    So what's my point of writing today? Not really to give you my life history...but somehow today I'm finding myself in tears. Now that she's no longer 5 mins up the road, now she's more my brother's responsibly than mine I find I'm trying to ignore the situation and that feels so desperate. I feel very guilty that i'm enjoying being free of the day to day grind of it all. I miss her terribly, not as she is now, but as she was before she got sick...I don't want to phone them...I keep putting it off...she doesn't really chat any more and he just moans and tells me how bad she is getting...if I don't phone I can pretend that she's getting better....and that just makes it worse when I do phone/go visit as she is obviously not better. We see her monthly - used to see her almost daily - and between visits I think about her as she used to be which makes the truth even harder to bear. I've delayed posting because I've been in denial...I don't need TP coz she's not that bad...kind of thing...but actually she is and I do.

    What a truly disgusting disease this is.

    Well sorry for that outburst....it's just that sometimes the truth of it bites and no one around me really understands.

    Thanks
     
  2. dmc

    dmc Registered User

    Mar 13, 2006
    1,157
    hello sharon

    welcome to TP so nice your out of the closet, :D
    its also my mum who has dementia and she is in hospital now, and i know how i feel if i dont visit or see her for a few days all of us in TP has a guilt monster on our shoulder and its always causes trouble, i think you'l find that theres so many others just like you here, i wont tell you to stop feeling guilty becouse i know you cant, just take it one day at a time, dont be scared of denial, im still doing it with my mum, and i think you;l find that although this forum is about alzheimers we have a lot more threads that,s nothing at all to do with it, its a great place if you need to moan, cry or just need a shoulder, its also a great place to cheer yourself up ive had many a laugh here.
    its been my lifeline hope it becomes yours too,
    look forward to hearing more from you and getting to know you.
    xx
     
  3. maria29al

    maria29al Registered User

    Mar 15, 2006
    426
    Warwickshire
    Sharon.

    Hello!

    You are right..it is an awful disease. My father died from it 3 months ago and my Mum is left (also with AD).

    I saw both parents daily when Dad was first in Hospital then a Nursing Home. I was with him when he died and have spent much time sorting carers etc for Mum who is still able to manage (just about) alone at home. I have 2 sisters who have been little or no help and have blamed me constantly for Mum and Dads demise.
    I understand the feeling of being alone completely.

    Since Dads death I have backed off from the situation as one of my sisters lives just down the road from mum. I thought maybe she should shoulder some of the responsibility this time and see that it is not so easy to deal with. Whichever way I have turned through all this it has been wrong in my sisters eyes, so I am now taking a back seat.

    I know how you feel now...it is hard not to be involved to the degree you were before. I dont call Mum daily as I used to and I certainly dont visit daily (which I still could do)..I too am scared of feeling so hopeless and helpless again when I see her and being so worried about what the future holds for her.

    So, you see, you are not alone in this. I am not alone in this. We all have stories to tell and share. It was reassurring to read yours as I feel in a similar position in so many ways.

    Stay strong and just know that all you did was full of love and oh so important. Now is your time to de-stress a little. Try not to feel guilty (she says!!!)...hard isnt it?

    Anyway, chin up and keep in touch.

    Hugs
    M
    x

    Ps: I used to live in Hampshire..in Lymington. Its a beautiful part of the UK. You are very lucky. :)
     
  4. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Hello Sharon

    Well if you thought that was a long post you ain’t seen some of mine!!! :eek: :D And yep - I was a lurker too once…. !!! ;)

    I know there are lots of people here will be able to identify with your particular situation better than I can just now but just wanted to say ‘welcome’ and I think you’ll suddenly find yourself surrounded now by people who DO understand, even though circumstances are different …..

    Sounds like a wonderful place your mum is in … thanks for sharing that - there’s you all apologetic (which there’s no need for!) and you’ve already given someone here some hope for the future!!!!!

    Love, Karen (TF), x
     
  5. BillieJay

    BillieJay Registered User

    Aug 31, 2006
    10
    Hi Sharon,

    Just wanted to say hello and welcome. Ive not been around here long myself, but almost everybody seems to start with a long post. It just all gets too much and you have to get it off your chest. There are some points where it overwhelms you, and this board is great for getting you through it. You're going through a lot at the moment, letting go of some bits of the past and admitting bits of the future. Crying is part of that for most people, trying to find things to laugh at isn't an option sometimes, though I think we all try to when we can.

    Alf seems to be a major problem, as it puts you off keeping in touch with your Mum and adds to the guilt. The only thing I can suggest is that maybe he's feeling that he's failed by not being able to look after your Mum himself and that's his real anger, as well as having to watch her deteriorate. He sounds like a caring sort if he nursed his first wife - could you turn his tirades round by telling how much your family values his support of and care for your Mum, and what a great job he's doing? Bit of psychology - you never know (and I could be totally wrong anyway.......)

    Vent away, and if the guilt monster starts chattering too loud, remember that you did and are doing your best.

    Good luck

    BJx
     
  6. DickG

    DickG Registered User

    Feb 26, 2006
    558
    Stow-on-the-Wold
    Hi Sharon

    Welcome to the club. Forget the guilt monster, it's a fraud invented by us all when we are searching for a reason for our supposed failures. We all do our best in very difficult circumstances so lets celebrate the good work we do.

    Poor Alf, he is weighed down by a whole regiment of guilt monsters - he feels guilty that someone is doing what he feel he should be doing, careing for your mum. I am close to his generation and can appreciate how keenly he feels his perceived failure, we care for our own, it's our duty and failure is unthinkable. Try to show him love and understanding for you are both on the same side and working together will be of great benefit to your mum.

    I have learnt that our old fashioned values do not fit this dreadful afliction mainly because all my family have rallied round, shown me love and a desire to help us both and that my wish to soldier on doing my bit was misplaced.

    I hope that you get some help and comfort from our diverse views for I am sure that somewhere on TP you will find a parallel experience which will help you through.

    Hugs

    Dick
     
  7. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    Hi Sharon
    Welcome to TP:)
    Don't worry about having a moan.......it usually end up making others feel better;)
    My mum was born and bred in Swindon....and my cousins still live there ....just thought I'd throw that in as a bit of useless information!!
    take care
    love xx
     
  8. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Hi Sharon
    welcome to this wonderful TP family.
    I can understand some of Alf's frustations,I have cared for my wife for over 11 years now and it does not get any easier.
    Alf is angry because for the second time he is being robbed of a peaceful happy life.
    What he has got isn't really what he would wish to have,do drop a tear of sympathy for him too.
    Post when you need
    Norman
     
  9. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia


    Dear Windfall,
    We have encountered a very similar situation with Dad as you have with Alf. Like you, the move for Mum and Dad to a secure and supportive environment (in their case, a dementia specific hostel) occurred very quickly - within 3 weeks of being accepted. Like your Mum, our's is happy with the new situation. Dad on the other hand is restless, resentful, gets angry about "all the strange people who live here" (!!) and is generally not happy.

    My family are a bit surprised because of the two of them, Dad is by far the more sociable personality and we thought he'd find it easier if he had people other than Mum to interact with. (Not all the residents have AD - altho' the majority do). But he is not happy and seems to resent Mum for bringing this about - very unfair and unreasonable really!!

    I'm sure you are right and it is resentment of the disease itself, plus anxiety about what his own future might hold (he is showing some early signs of AD too, but doesn't acknowledge it) and a general longing for "how life used to be".

    I wish we could turn back the clock for them and for us too - but only if we didn't have to go through all this a second time!!

    Wishing you peace of mind,
    Nell
     
  10. Windfall

    Windfall Registered User

    Oct 18, 2005
    12
    Hampshire
    Guilt monsters

    Hi all,

    today - in spite of the rain - things are looking better thank-you for your kind responses.

    Norman and DickG, I do try to understand what Alf is going through and we do share some tears together. The whole situation is awful and not what any of us would want - why am I saying that? You all know just what I'm talking about..it's just that standing on the outside now it appears as if he's being obstructive. He refuses to join in with any activities that are arranged and gets quite cross with mum when she goes wandering off to chat. He's told me that he's afraid that if she mixes with people who are more confused than she is she will get worse. I'm sure that's not true. Surely AD will progress at its own pace? He also nags and bullies her, something I find particulary hard to watch but don't know what to do about it.

    Please don't think I'm getting at him, I'm not, I'm very grateful that he's in her life my dad died 20 years ago...why should she have been alone all that time. I'm also very aware how sad and angry he is that this has happened - before she became ill they had a wonderful time.

    You guys are so right about the guilt monster...since we moved her...i've been tormenting myself with the thought that actually she wasn't that bad & I only wanted her out of my way! Not true but how we like to torture ourselves.

    Mel - where in Swindon do your cousins live? My brother is in West Swindon and the home is out by the crematorium (so lots of jokes from the oldies about the final move next door).

    Maria, yes we are lucky. I live over on the West Sussex boarder only a short walk down a cycle track to the sea at Langstone. It is beautiful.

    I'll tell you more about the home she's in if you're interested. I will rattle on about it to anyone who will listen. She's also got a great medical team looking out for her, it seems that Swindon is a bit of a centre of excellence for AD care and she's being treated with some experimental drugs. So there is a lot to be positive about, it's just not always so easy to remember that.

    Anyway, thanks again. Looks like now I've started out the closet you'll never shut me up! :)
     
  11. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    Hi Sharon
    both my cousins live in Haydon,swindon.....mum used to live in Upper Stratton,in recent years when we've gone back we've stayed at the Cold Harbour in Highworth...I know the crematorium well....mum lost 2 sisters and 2 brothers in 4 years....so I've been a regular visitor!....I visit the cemetery (not as often as I should) in Green Lane,upper stratton as my grandparents are buried there....

    I hadn't noticed the home next to the crem....it sounds great....
    Take care and keep posting
    Love
     

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