Fed up and full of self pity!

Discussion in 'ARCHIVE FORUM: Support discussions' started by Lucille, Jun 12, 2007.

  1. Lucille

    Lucille Registered User

    Sep 10, 2005

    Mum suddenly seems to have gone downhill. Yesterday I watched as she tried to work out where she should put the potatoes. She opened one cupboard door and then another. Finally she looked at me askance. I told her where the veg rack was and she said, 'of course, of course, my head is everywhere.' I thought, this is it, she's moving further away. She's also started making up little stories; mainly, I guess because she can't remember facts. For the first time, I've realised that her short term memory is completely shot. Of course, I've suspected it was bad, but not as bad as it is; always wanting to give her credit and prompting her. She is very lonely and yet refuses any intervention in terms of day care and so she exists from one day to the next.

    She is beginning to look like a frail little bird. She put on a pair of trousers and looked like she'd got lost in them, they were so big. Neighbours have told me that she's very low and sometimes asks for money (says she's often run out - probably because she's spent it on 'things'). I'm worried about the finance side of things as although I've limited her access: I have unregistered EPA, she can still go to the bank (I don't live near so can't dole it out when needed).

    I feel really, really sad. I know I'll get over this until the next time, but she won't and I guess that's what hurts the most. Sorry to sound so depressed! I can usually find some humour in a situation and my mum is (was) like sunshine ... but she's disappearing in front of me and it's cold when the sun goes in.

    Thanks for listening, just needed to vent. I've had a bad day and now I've the joys of tea to think about; boiling spuds and spinning a salad!
  2. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    Your mum

    Hello, you didn't give your name. I am new to this, just posted my first mail re my mum. Hope you will read it and reply.

    I just wanted to give you some kindness.

    My mum is getting to the same stage, not with the potatoes, it is shopping. I try to get her to do a list, she always brings last weeks! We get to the end and she suddenly says "butter", so back we go ten aisles. Then she says "washing powers" so back the other way. Last week she just stood there, and I said "what are you looking for, mum", and she said "I don't know". She looked so lost.

    Clothes. On a Sunday she goes to church, so she gets dressed in whatever, I don't know. Then I take her shopping, so she gets changed. When we get back home, she gets changed again - and none of the outfits are any different! She might swap from stained trousers to a stained skirt and back to another pair of stained trousers (not unclean, just years and years old - she was wearing a skirt I remember her wearing when I was a kid, and I'm 55!).

    It must be worse for you cos your mum was "sunshine" and my mum never has been.

    As said, I'm new to this, but I bet we're all in the same boat.

    One of the questions I have is re the unregistered EPA. Will the bank accept this to restrict access to particular accounts? So you can leave your mum free to manage one of them for day-to-day stuff? I'd be interested to know.

    I'm a bit bothered by the guidance that says I must register it when I have "reason to believe she is becoming mentally incapable of managing her affairs". Well, I'm sure she is, but so far she is managing financial stuff, to a point, and I don't want to take that away from her. I'd appreciate your advice.

    Keep your chin up.


  3. sunny

    sunny Registered User

    Sep 1, 2006
    It sounds as if your mother should not be living on her own, or if she has to with a great deal of help. How does she manage to feed herself, no wonder she is losing weight? Have you been in touch with your local services, has she been diagnosed properly? Hope you don't mind me saying, but I think you ought to seek further help, I know she says she doesn't want any, but the situation seems to be drifting and it seems you are the "life raft". Regards. Sunny
  4. Lucille

    Lucille Registered User

    Sep 10, 2005
    #4 Lucille, Jun 12, 2007
    Last edited: Jun 12, 2007
    Hello Margaret and Sunny

    To answer your questions:

    Margaret, I've just read your post. Am sorry about your mum. It certainly sounds like she has dementia. I drew a lot of parallels with my own mum and my situation as her main carer.

    Regards your mums medication; sounds like you need to involve social services to arrange some kind of drop in care. Sunny: I have this for mum and yes, she has been diagnosed; she has AD/VaD. She can still wash, dress and cook for herself. She currently has the support of an OT for an hour a week to motivate her to do things round the house. Unfortunately this is not working, so I do it for her; take washing, do bulk shopping etc. Her CPN is keen for her to keep her independence, so, Sunny, perhaps I painted too bleak a picture in that mum and I are flailing around in this rough sea on our own. We are not, it's just that after I've spent time with her, I feel like I am alone. I live 180 miles away; so it's not easy to manage; straightforward things like, taking her to the hospital for a blood test!

    Margaret, about the unregistered EPA. At the moment, I have told the bank mum has had strokes (true) and have given them all the paperwork, they wanted copies of our passports and my signature. (BTW: I downloaded the necessaries from the Public Guardianship Office (PGO) website and, like many here on TP, did not use a solicitor. I have also had mum's debit card taken off her; she can now only go into the bank - where they know her - and draw out a limited amount of cash per day. Anything over the amount, the bank rings me. They have done this once; I refused the transaction, mum was - shall we say - "displeased" but has now forgotten about it. All her bills are paid by DD. I use electronic banking to switch money between her small savings account to cover her rent, if there's not enough in there say, because her pension or Attendance Allowance hasn't gone in.

    From my personal experience, getting the diagnosis, triggered the CPN. The CPN triggered the Social Worker and she triggered the Carers who pop in to give her a.m. and p.m. meds. As mum deteriorated, the CPN triggered the OT. Next stop, who knows and I sound trigger happy!! I hope this has been of some use. All this knowledge I got from here on TP, from other wonderful people who are going through what we are going through. Me posting this to you has helped me out of the doldrums; plus I have now eaten the spuds, salad (and quiche) mentioned in my earlier post.

    Take care and let me know how you get on. (Also forgot to mention that the SW triggered (that word again) a man from Social Services who came round and went through what mum was entitled to, e.g. Attendance Allowance and then someone from the Council came round and told us that she didn't have to pay Council Tax because of the diagnosis. Persevere. If nothing else, all this administrative work tends to keep one's mind occupied!
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Lucille, There were so many parallels in your post, between your mother and my husband. It`s so upsetting to witness, knowing you can do nothing to help.
    Can only sympathize.
    LOve xx
  6. Lucille

    Lucille Registered User

    Sep 10, 2005
    Hello Sylvia

    Do you know, when I wrote that post, I was crying my eyes out - now look like I've gone 10 rounds with King Kong (lovely). Eyes are like burnt holes in a blanket.

    Thank you so much for you reply; I think reading the responses from fellow TPers is a great help plus replying to someone else on here also goes a long way in moving me off 'my' problem and, hopefully, helping with someone else's.

    Take care
  7. Margarita

    Margarita Registered User

    Feb 17, 2006
    I know that thought so well in the last 2 years out of 5 that mum had AZ , It is so sad to see , when they lose lots of they Cooking skills , lots of other little thing you notice , that make you cry .

    But to my mother she still Ok , that make me :) as she says , can you peel the orange ? as my eyes are not good :)

    My mother was the best orange peeler going !
  8. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    Frail little birds ….

    Oh Lucille, give yourself permission to have ‘full of self pity days’ …. permission to have days when it ‘hits you between the eyes’ and denial is no longer a safety valve …..

    I’d never describe my own mother as sunshine and often think it must hit very much harder for all who can - yet she is still ‘mum’ …. and to see any one at times so vulnerable (dare I say almost pitiful) breaks my heart …. fact she’s ‘mum’ .. well ….

    Confession time now … thought I was moving onto ‘easy street’ with the warmer weather … selfishly fretting less about at least one hot meal per day …… can leave salads, pastries ……. maybe leave out the ‘can she still manage one button on the microwave checks?‘ …. now into ‘What can she leave out of the fridge/hide to go rancid within 24 hours’ phase …….?’ (Did I mention the cream cakes she’d ‘hidden’ for a week because she was saving them because they looked so nice? - where they‘d been from one weekend to the next Goodness only knows ….. certainly not in the places I routinely check - fridge, bread bin etc on almost daily visits ….)

    Not trying to scaremonger there but I think I’m with Sunny …. I’m five minutes away from mum and can’t keep a check on her morning, noon and night …… and moving towards ‘persuading’ (oh, that will be fun!!!) that we need to source professional help …… if it’s just a quick check in through the day when I can’t be there ……

    It’s too easy to share their ‘reluctance’ and try to comply with their wishes … but you are going to put yourself under so much pressure yourself soon, Lucille…… and you can’t possibly cope with all the demands from a distance without some localised support for mum …….

    So sympathise …

    Much, much love and hugs……. Karen, x

    PS: On a lighter note, hope your spuds are spun and your salad is boiled ……. well, that’s about my level of coping some days ……..
  9. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    Sylvia, I think there are lots of ways we can help - from a distance or otherwise .....

    To me, being negative is the very worst thing .... raising self-esteem, any level of capability - for either 'sufferer' or 'carer' .... any ounce of emotional or practical support ... even if that includes avoidance of tasks at times .... and if we can't find it in ourselves ... looking to others for support including for ourselves ....

    The minute anyone says ' knowing you can do nothing to help' is the time we might as well all pack in and stop trying .......

    Not a challenge ..... but I personally find a 'defeatist' statement like that a non-plus in trying to be supportive to each other here ...

    Of COURSE there are ways to help - may not completely solve a problem but a little something may ease it .... ....... we've just got to help each other to find them ......

  10. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Karen, I'm afraid I don't find your post in any way positive, self-esteem raising, supportive or helpful.

    Lucille did in fact find Sylvia's post helpful -- learning that someone knows exactly how you are feeling, is experiencing similar feelings of helplessness, is one of the best form of support.

    I wonder if you realise what a terrible time Sylvia is having just now? Have you read her thread? I can't believe you could be so unkind knowing her circumstances.
  11. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    I am sorry I simply don't have the time these days to fit in all my commitments (including to myself) to read through every thread before responding .....

    I am sorry Sylvia is having a tough time .... we all are - in different shades of grey ...... I meant no offence and certainly did not mean to be unkind .....

    Lucille's circumstances and Sylvia's are vastly different ..... and none match any others either ... we all do our best ... some of us just keep striving for what positives we can when we can ... and hope it helps others out of the despair which can be too familiar - at whatever point in the spectrum of grey .....

    I can't seem to say right for saying wrong these days .... :(

  12. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Database technology

    [don't worry, I haven't lost it... well not yet, anyway]

    We all know that organisations keep a mass of data these days about all sorts of things. Such data will normally be held in what is called a relational database, made up of many different data files, or tables, which can be combined to provide information. Which is far as I intend to go technology-wise.

    Data on its own is valueless, unless we can select and use it, and we generally use data from a database by taking a particular 'view' of the data.

    The view we select will depend on what we wish to learn from the data, and the data that is available to us in the first place.

    Database technology as applied to caring

    Carers need to pull together whatever bag of tools they can in fulfilling their caring role.

    Each carer may have different tools from others, and they may apply different skills and views to a common challenge.

    The macro view
    Sylvia, it seems to me, takes one view of realism, with a bottom line that in reality there is nothing that can help - that does not stop her trying endlessly in her own situation, and in supporting other people in similar plights.
    Lucille clearly found Sylvia's reply helpful.

    The micro view
    Karen - it seems to me - takes a view of the same situation from a different perspective. Karen, I'm sure, recognises the same things as Sylvia, but puts the things she can't do anything about to one side, and then rolls up her sleeves and makes a difference in the areas where she CAN help.

    Which is exactly what Sylvia does anyway. Being realistic does not impede the other areas of helping the one we care for.

    In reality, it seems to me, they are probably in agreement.

    As with all posts, language is important, and it is better to find less emotive words than 'defeatist', especially because it is demonstrably clear from Sylvia's more than 3,000 posts in support of members, that the last thing she is is defeatist.

    Final point:
    Lucille is clearly doing all the key things, so very well done, and thanks both to Sylvia and Karen [and everyone else] for responding to the thread..
  13. Lucille

    Lucille Registered User

    Sep 10, 2005

    Thank you! Having read the posts, I thought gulp! What else can I do in terms of getting help? But perhaps my initial post wasn't clear enough, but then I didn't feel clear when I wrote it, hey ho. We all have our bad days, don't we?

    Anyway, have just spoken to mum's CPN who is wonderful. She has come up with some useful suggestions which she is going to follow through for me and let me know.

    Thanks, Bruce for putting the posts from everyone in a clear and objective way. I would have hated it if I thought I'd have started (albeit unwittingly) a mutiny amongst my fellow TPers! :D .
  14. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Lucille, you haven't started a mutiny, and your post was quite clear! Yes we do all have bad days, and TP is here for you whenever you need us, as you're here for us.

    I'm glad your CPN was helpful. Let us know how it goes.

  15. Lucille

    Lucille Registered User

    Sep 10, 2005
    Thanks, very much Hazel.

    She seems to think mum is depressed, made worse by the dementia. The consultant is going to see her next week; possibly with a view to mild anti-depressants.

    Hope you and John are OK.

    Take care.
  16. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Thanks, Lucille. John and I are OK at the moment, apart from lack of sleep.

    One of the great things about TP is that there are so many of us, there's always someone on a plateau and able to support. I know you'll all be there for me when I need you.


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