1. Dave W

    Dave W Registered User

    Jul 3, 2005
    268
    Bucks
    I'd appreciate people's advice. While we're used to getting the "I want to go home" routine during visits to see Mum in her home (there since March), feedback from the home is that she is generally chatty, fairly lively and seems contented most of the time. Their analysis is that we are the 'outlet' for frustration, which exhibits itself as wanting to go home. To us, Mum is blaming the hospital doctor for 'putting her there'. (We noticed from the last visit that, briefly distracted by one of the staff, she suddenly spoke about the lovely evening with a local accordion player they'd had the night before, which she'd never mentioned to us - we're obviously reserved for the doom and gloom).

    Over the weekend, visiting Mum's home and catching up with neighbours, it transpires she has been writing letters to them pleading to be taken home and even enclosing saes to ask them to send her the key. This is understandably upsetting them, as they have known Mum for years and were good friends in many cases. I know she's been writing to them in the past and sounded very gloomy, and spoke to the home. Their view is that, while it's obviously upsetting, they'd rather she had the ability to write letters and won't stop her.

    Given she's - to us - in complete denial of any problem, trying to explain why she is where she is seems like a no go. Are we stuck in this loop until further notice? Any suggestion or advice?
     
  2. tinker

    tinker Registered User

    May 4, 2006
    8
    Hi Dave,

    It sounds as though your mum is in a great home and that they are keen to encourage her in activities, which is all to the good.

    I do understand that they do not want to restrict her writing and sending letters to friends and neighbours etc.

    I'm not sure of her situation? Is she able to leave the home and walk to the post box to send the letters, or does she give them to a nurse to post for her?

    If it's the latter, perhaps they could hold the mail and you could read it prior to posting it? Explaining that you do not intend to disrupt your Mum's ability to communicate, but you have been requested by the very friends and neighbours she is contacting to try and intervene without upsetting or distressing her.

    OR if you cannot control the letter writing, does the home have 'activity' days? where therapists hold craft or dexterity 'classes' for patients? This may focus her energies on the more positive things and give her more things to do.

    ie: making brithday or greeting cards, drawing or painting, etc..

    Hope this helps?
     
  3. Dave W

    Dave W Registered User

    Jul 3, 2005
    268
    Bucks
    Letters

    Mum is allowed out (being followed without knowing it) to the local shop, where there's a post-box, so I'm not in a position to stop her, and the home are unwilling to do so. I've alerted the home to the situation this morning, and they're going to speak to some of Mum's friends who have more idea than me on her normal daily routine (as I didn't live with her for 30 years before all this began to happen) so they can try to make her feel more 'at home'.

    Beyond that, I get the feeling I'm stuck with this one :-(
     
  4. Áine

    Áine Registered User

    Hi Dave

    My first thought on this was how awful for you to know that your mum continues to feel so distressed and unsettled. And horrible for her and the neighbours.

    I don't know how many neighbours and friends are involved in this or whether you know them all ..... but, if they're made aware of the situation, how is it a problem? I'm not being dismissive of the distress it's causing, but what is it that needs to stop? I wish your mum (and my dad) were feeling more settled, but if the neighbours talk with the nh and understand why this is happening maybe it won't be such a big deal. Maybe your mum could write to them to invite them to tea, or to meet her for coffee on one of her trips to the shops? (OK, dream on :( ) It seems to me that the problem comes back to the basic one of her not feeling settled - when I have an answer to that one I'll let you know :confused:
     
  5. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    A different perspective....?

    Far from your mum being distressed and unsettled, could it be she has found a 'place of safety' from which she is finally 'confident' to let out her hurt?

    That hurt may not necessarily be at you, or her neighbours - just needs a focus - and a safe bastion to fire it from.... she seems to have both. What is the REAL (current or historic) problem for her which she is maybe working out for herself now in her own way? Maybe there isn't one (I hope there isn't) but I wonder if she still has the concept of an SAE, then she knows herself she needs some kind of response - not necessarily in the form of a key....

    Just a thought......

    Hugs, Karen, x
     
  6. Dave W

    Dave W Registered User

    Jul 3, 2005
    268
    Bucks
    Food for thought

    Thanks to everyone for such thoughtful and thought provoking replies. I've spoken again to the home today, and they said it may not be 'home'as such (although she seems quite specific), it's a feeling that she's probably yearning for, rather than a specific actual place. I've emailed them as much detail as I can about Mum's daily routine, as was (before it began to fall apart on her) so that they can think about ways of trying to replicate it.

    I think the point about activity is also a good one: tonight, nervously, we took Mum over to a friend's house (the lady who's looking after her dog) for dinner. Expecting this to possibly be chaos and traumatic, it was actually a good evening, and I think Mum really enjoyed it. She got a home-cooked meal, had a glass of wine with dinner (I'd have loved to have romped through a bottle, but am back on the anti-bios as I now have an abscess to see off so I can have a tooth pulled - it never rains, etc.), and talked about all sorts of good points and laughs she's been having with the staff and some of the other residents. Stuff we never hear otherwise, it seems to me - it seems we *are the vent.

    I think there's also possibly an aspect of the deniual process here - maybe I'm wrong. The residents most obviously demented in the home are the ones she "complains" about - usually along the lines of "she's totally mad, I don't know why she's here, it's not right". (It's a mixed home - not all residents have dementia.) Maybe there's an element of her denial of her own condition (from conversations seh's had with one or two of the staff, it seems she does to some extent acknowledge there is a mental health issue, although she won't admit that to us or discuss it)? Maybe she's simply deriving more satisfaction from conversations with the others, and also from moments like this evening.

    I wish I could get inside her head so I knewwhat the right thing to do is, but it's so damnably difficult. Will keep trying. Keep the food for thought coming though :)
     
  7. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #7 Margarita, May 16, 2006
    Last edited: May 16, 2006
    Yes I would say that to
    and maybe that’s why your finding it so damnably difficult ,because your not excepting how your mum is Coping with it

    when you say

    Maybe she from that generation that is to proud to let her guard down & show her feeling , still wants to keep some control of her life ,so keeping that part from you is keeping /Gaining some of her self respect back, & Control (And yes the sad part is that she has lost it. We know that so it’s like a unspoken secret between you )

    you are doing the right thing you love her

    Hope you do not think I am out of place in saying all that
     
  8. Dave W

    Dave W Registered User

    Jul 3, 2005
    268
    Bucks
    Not out of place at all ...

    Margarita - I hope I never accuse anyone on TP of talking out of place - we're all trying to make sense of difficult situations, often where those who 'hold the key' are unable to really help us to find it. So I welcome anyone and everyone's comments.

    And I think you're also very right - Mum has always been very proud and very ... I guess valiant is the right word. She'd be ashamed to admit there was a problem with anything, especially to us. I'm trying to take over running bits of her life without her knowing so it's not too shaming or humiliating for her, and I guess she's trying to let me without admitting to me what's going on.

    I feel simultaneously very proud of her for battling on, and very sad for her to see her unable to be the proud in dependent woman she's been and still wants to be. Terrible feeling, terrible.
     
  9. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    Hi Dave
    I SO go along with all you're saying...My brother has EPA for mum and I know how he feels about it....Yesterday he had the estate agent round to mum's house and it will go on the market very soon. It's an awful position to be in.....we feel like all mum's rights and freedom are gradually being taken away bit by bit and it's a tough burden to bear. Mum too is a battler and yes I feel so very sad when I think what this disease is doing to her.....the only things she can remember are her childhood and her days in the army....so basically the last 60 years have totally gone....She rarely remembers my dad...let alone being married to him(they were married for 55 years),can't remember having children etc etc. I guess we take our memories for granted and to have them all wiped out is so very cruel.
    Take care
    Wendy
    x
     
  10. moviefan318

    moviefan318 Registered User

    Apr 30, 2006
    32
    northamptonshire
    hi mel
    you said your mum was married 55 yrs ,my mum and dad were married 58 yrs dad died december 2004 he had emphysema for 11 yrs they were very close but mum has not spoken of him since he died,that i find hard as i am an only child and have know one to talk about dad to,well not things that happened when i was growing up.even so dad would have been heartbroken to see mum like this perhaps thinks do happen for a reason
    carol
     
  11. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    HI Carol
    Yes that's another thing isn't it....talking about your dad after he died....I certainly felt very alone after he died but I suppose mum was spared a lot of the grief because although we told her he'd died it was soon forgotten
     
  12. twink

    twink Registered User

    Oct 28, 2005
    265
    Cambridgeshire UK
    Dads

    Hi Carol,

    My Mum and Dad were married for 56 years and Dad died from a lung disease in December 2004 too. He had a thing called Fibrosing Alveolitis and then all his organs failed. Your Mum must be still grieving very much, maybe she thinks talking about him will upset her or you too much. I too am an only child and I ring Mum every day ( we're 160 miles apart) and we speak about Dad every single day, Dad would have said this or Dad would have done that. For the first few months she did cry everytime he was mentioned but now we have a laugh at some of the things he did or said. Hope your Mum can bring herself to talk to you about him in the not too distant future, it is so sad they're not here now but it feels good to talk about them and actually be able to laugh.

    Twink - Sue
     
  13. Dave W

    Dave W Registered User

    Jul 3, 2005
    268
    Bucks
    Resonating to myself

    So many points I empathise with - missing my Dad (he died 6 years ago, and was my hero: a lovely, shy, humble man: after talking about him incessantly for a couple of years, Mum seems rarely to mention him know, and he's not there to talk to about all this - though he would have been devastated to see her like this), being an only child (for me, I think the single hardest part; my partners been wonderful, but I don't have other 'family' to share with, just a few fairly distant relatives that I've barely known throughout my life).

    The hardest thing immediately for me at the moment is that she's so much more ' with it' than a few months ago. Partly she's always tried to 'present' well (horrid SS jargon, but how else to put it), partly the better environment than a hospital ward and the greater stimulation, partly the medication regime. At times I find myself thinking 'maybe she would manage' if she could have her wish and go home (and she must be homesick as well as the usual 'home' issue with dementia sufferers - it was her home for 40 years). If there had been more a family to help or support, or she'd been willing to let people help (dead against it always, and had furious rows with a couple of carers), just maybe ... or is that all just GuiltMonster(TM) talking and me wishing there was a more comfortable solution for my sake?
     
  14. Lucille

    Lucille Registered User

    Sep 10, 2005
    542
    Resonating to myself

    Hi Dave

    I can sympathise with you, especially when you say:

    "If there had been more a family to help or support, or she'd been willing to let people help (dead against it always, and had furious rows with a couple of carers), just maybe ... or is that all just GuiltMonster(TM) talking and me wishing there was a more comfortable solution for my sake?"

    I am not an only child, but I might as well be. I have been left to sort out my mum's welfare despite the fact that my brother only lives a few miles away. When I told him mum's diagnosis, he just said "oh right." No questions. No offer of help. Now I think that as stressful as this whole illness is for mum (and me), it's more so if I spend time trying to reason why my sibling isn't interested. I've tried (and failed) to seek support, to no avail. My mum also seems fine at times and yet today I had a call from the SW asking me if I knew where mum had put her tablets (whilst mum is still insisting there's nothing wrong with her). One thing the SW said, that has stuck with me all day, is that I can't do everything I think I should be doing for mum AND get on with my own life. As much as I feel, as you probably do, that we have that responsibility, it's just not possible - not without losing our sanity!

    And what's wrong with wanting a comfortable solution? We are human, if we weren't we wouldn't be looking out for our parents. The GuildMonster stalks us all. You are doing all you can.
     
  15. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Dave,
    Mum is in a safe environment now, where she is being fed and cared for, where there are routines. I suspect that if she returned to her home environment where she was isolated, without regular nutrition and trying to cope with day to day living, you would soon see a reversion. Her brain is not having to try and deal with the day to day living in the same way, it is probably less tired, so she is coping better.
    You know, in your heart that she is in the right place for both her and you.
    How old was your dad when he died?
    Love Amy
     
  16. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    moviefan318

    When my father died in 02, my mum never talk about him for a good 8/12 mouths, if I talk about him during that time all she would say was poor thing , I only saw her cry ones , & that was only because I keep talking about him & she said do you want to see me cry ? & she did, after that I just never talk about him to her till she was ready.

    They had been married for 55 years , , now 4 years on , she only talk to me about dad if she has dreamt about him , or I bring him in to the conversation . I put a wedding photo of her & dad in her bedroom yesterday & all she mention was about her hair & how young dad was , she got a bit worried that the photo was going to come alive , I told her I take it down if she wanted ,but we left it hanging
     
  17. moviefan318

    moviefan318 Registered User

    Apr 30, 2006
    32
    northamptonshire
    hi margarita
    mum has had pictures of dad in her room and its almost as if she does not see him,its funny but yesterday was the first time that mum has try to say my name in at least 2 yrs but its as if she has deliberatly blocked dad out ,mum does not really talk only yes and no
    on a brighter note mum has got her funding and has been moved to her new home today
    thanks for replying carol
     
  18. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    I know our parents are at different stages with there dementia, but I was wondering does or did your mother ever take any medication for dementia?

    Am pleased to hear that you got the funding You never know once your mum settles in her new home, I know it may take a while she may open up more.

    I don’t know really, but I wonder with our parents having dementia & our father death, its hard for us anyway with grief to cope emotional or even understand those feeling of grief.

    So someone with dementia & all the confusion that is happening to the brain part dieing, it must be harder for them to make any sense of those feeling & may find it more confusing to express it or not even know how to express it, so they keep quite , get angry block it or just really do forget it . Just a thought .

    That must of been lovely for you to have heard your mum say your name after 2 years
     
  19. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Dave, so much in your last post triggered 'stuff' for me.... only child, family who don't care etc etc etc - and to regress back to the point of neighbours.... I only cope (not) now because mum (living at home) has one neighbour of nearly 40 years on whom I can (almost) totally rely - if just checking her door is locked and lights are off at night and to bob in for a chat every other day whether I have been there for hours or not. When I know said neighbour goes away for a short break, we are all 'alarm bells ringing'...

    But even she (neighbour) can't seem to understand why we don't want mum to hand over cash to anyone, including a gardener (units, tens and hundreds were never a strong point in the first place for mum, bless!) Have had gardeners for several years since dad was unable to manage - mum has fallen out with all of them.... but truth - just on this practical level - I CAN'T COPE. My own house is falling about my ears.... there is no-one (including my partner because of his own health) that can do all the 'practical' - and on that basis alone I am starting to think mum will move into 'care' (I'm not sure what the PC word is anymore) sooner rather than later - not because of her own needs but because *I* am unable to physically accommodate those needs - including she won't move in with us, she doesn't want anyone 'coming in' to her house (except me) ....

    This, to me, is the sad reality that is sinking in. In a lucid moment, mum acknowleged this week that I am 'running two houses'. That I would not see as such a challenge if one did not include a school age child, and the other mum herself... who in the next breath tells me before I cut HER grass at the weekend, could I please.........????

    I have been bitterly disappointed with mum's (so-called) friends, neighbours and family.....few that they are. I have thought much of this post and how you seemed to 'find out' for yourself about the letter writing rather than anyone 'alerting you'.. There was an incident a few months back when I decided enough was enough - if 'they' didn't tell me what was happening when I was at work/with my own family then they should have done. (Methinks) I just sat down at the phone for a few hours over a couple of evenings and systematically rang round all mum's 'friends' and contacts and suggested that as I was unable to be with her 24/7 and if they were so concerned about her mental state or anything else, could they please contact me so that I was better informed when I next took her to the doctors.....

    What I'm finding so far, is that people are generally 'backing off'.....

    Soz, that was meant to help and turned into my own rant....

    Karen, x
     
  20. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Karen,
    Ow! A painful admission I think Karen, but well done - you must look at the bigger picture, and you have friends here who will support you as you make the decisions you need to.
    Love Amy
     

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