Care Home PC **** and Pumblechook

Discussion in 'ARCHIVE FORUM: Support discussions' started by Chesca, Jul 31, 2004.

  1. Chesca

    Chesca Guest

    #1 Chesca, Jul 31, 2004
    Last edited by a moderator: Aug 16, 2004
    Dear All thank you for this space

    I am so consumed with grief, there is nowhere else to go; nobody close to me to hear what they haven't heard before; the glazed, bored, here-we-go-again eyes, the what-else-do-you-expect-me-to-do? mantra. 'What I expect you to do is for once in your life put my mother's needs first, not your me Mr Nice Cop you Nasty Cop that makes me want to heave out the contents of my stomach as an exorcism of the hate I feel for you, my father. A father who always put his own needs before those of any members of his family, especially his wife, and now at the end of the day when it matters he does what she always expected he would do - let her down, not fight her corner, mustn't upset the staff they might mistreat her! Ha! the only thing mistreating my darling Mrs Pumblechook, is Mamon.

    The vocational staff caring for her in a Bupa home are not allowed to practice a vocation born of their own personal experiences - ask them why they do it if you haven't already, I've found that they've been there, they know. As one fabulous (in all senses of the word) carer told me, she had nursed her mother who had a brain tumour at an early age - a smile or a thank you from her charges was enough job satisfaction for the day! Can many of us say the same? However, within the rules of Mamon, and I know this from personal professional experience, they must attend courses for this and that politically correct cause. Frankly, I never subscribed to the compensation culture but I would be quite prepared to take on these opportunists but not for any vocational staff member's transgression, aways supposing Mamon understands the charge. What we, the consumer, want for our loved ones is the closest we can get to the love and understanding we all feel for our own - it ain't going to be perfect but it ain't going to involve the interests of the shareholders' dividends. Take it from me, if you can afford it, find a small private place out of the plc ethos - a little like the chattering classes do for their children's education. ....Should we write a handbook?

    Lest you be thinking, 'hang on, if you're so smart get her out of there: two things stop me - one, that which she married and, two, 12 months ago we urgently moved very close thinking location would prevent admission and bolster any outside agency support, but in fact not even taking that into account - at the time just a need to be on hand, take the pressure off! ....and took the first available place; spacially brilliant for the job but three floors up and no lift........but it's secure and to those who say ' oooooh, but your life won't be your own', my life ain't my own; it's 2.19 in the morning and here I am. I think in separating the emotional (for which I thank you for this space) the practical issue is that I do not belive that Pumblechook is in the place right for her just yet, (she was shifted by the hospital pdq, as indicated by the social worker who always gets the blame for bed blocking) but how do I seek to have her reassessed and placed in a more benign environment for these months. I need to be told!

    I won't suppose to speak for the feelings of others - I read enough here to know that grief, bereavement, call it what you will, are such richly diverse emotions - but is it too much to hope, having accepted the inevitability of dementia such that to be at home any longer will present a risk; that once in the home not even really of one's choice, my mother is in a mad house far too early; she can feed herself, change herself if allowed, read though not necessarily absorb - resents the instrusion of somebody trying to change a pad which she doesn't need, firstly because she knows when she needs to pee - can read just can't find the toilet in time and is on water tablets! for which nobody can account despite them being unprescribed earlier - I am told she is ALLOWED! four pads a day! ALLOWED? Pumblechook pays for this, has always paid her way. Four water infections in four months! No antibacterial wipes when another pad is whizzed on. It ain't the four pads is it? It is the labour instensivity of changing the four pads. We have our own bundle of pads but this is resented. Once when seeking to dispose of a soiled pad in the locked sluice room, a member of staff suggested that perhaps I could take it home. Nae problem, nae carrier bag!

    I was called by Pumblechook's nursing home at 9.30 p.m. two weeks ago tonight because she had had an 'accident' and needed to go to hospital; they apologised but needed somebody to go with her as they were short staffed! I have always emphasised that I will attend any outside appointments regardless of home staff necessarily in attendance as I am used to her fears and surely to Christ it must be acknowledged - I have looked after her for the best part of five years, I know how to reassure her when she's afraid - it's easy, she taught me how to care for a loved one ever since I was a child.

    The leg injury? Nobody knows what happened, the wound may result in a possible skin graft viz the A&E doctor, but they can categorically state it was an 'accident'. As anyone briefed in basic law will tell you, if you 'don't know what happened' you cannot state 'categorically' . My beef ain't with the staff, as I said earlier. It's with the accountability of the management of a major 'care provider' (read the PR ****) that cannot provide the care promised.

    On taking my mother to hospital she was in a personal state of hygiene that would have shamed her (thank you the fabulous ambulance staff and the doctor - I swear he was only 15!; and John, the nurse at the major inner city hospital heaving with serious emergencies who treated Pumblechook with such dignity and kindness it makes me cry as I write this, he cleaned and changed that which she had worn for the best part of four hours - I checked her records - ('four pads a day you know' per the home - she stank not only of pee, had **** herself and stunk of BO) all remarked that according to the documentation she required 24 hour attention - the pause hung heavily pregnant in the air.

    And still nobody knew what had happened, the matron hadn't delegated to anybody with sufficient nouse to say 'leave it with me, one way or the other I'll get back to you'. For the delegatee, the Matron was asleep, after all it was four o'clock in the morning. So I suggested that given that I was not asleep given her cavalier regard to her charges that perhaps it was time she was awake. The delegatee couldn't bring herself to do so but, 'back against the wall', gave me her mobile phone number. So I phoned her - I just hope she was having the best sex of her life at the time! Subsequently the **** hit but, given her EMI unit stunk like the Ape house at Chester Zoo, it probably made her feel kind of homesick! Since I mentioned it, the place doesn't quite smell the same.....maybe she has gone home!

    The truth of the matter is that nobody has ever given to us as a family a true diagnoses of Pumblechook's statet; no definition - 'there are so many forms of dementia' are the answers we receive. Drugs? 'Why do you need to know'?. I read with almost envy those messages that start .....[my loved one] 'recently diagnosed with vascular dementia', etc., etc.

    Tired and old as I know her husband is, I look after him so I know, I wish he's just hand over the power to us to ensure her rights. Actually, I suppose I believe in doing so we will be able to improve the future for ourselves and other loved ones.

    As a parting shot, in a long distance phone conversation with one of Pumblechook's other daughter's this evening, she was upset to tell me that her favourite cat had died recently and she couldn't tell anybody because the pain of leaving the vet without the cat ever coming home again was too much to bear. She couldn't possibly speak about it, she was sick of having red eyes from crying! Quel tragedia!

    Regards. Chesca
     
  2. Jude

    Jude Registered User

    Dear Chesca,

    That was one hell of a tirade you wrote... I hope you are feeling a whole lot better now. I really DO hope so!

    You've highlighted many of the frustrations that we all face here. Basically, lack of family support with caring; knowing we can do so much better than a Nursing Home; the feeling that we are being ripped off mega by huge care fee bills - and probably the worst - feeling totally inadequate to be able to stop the degeneration of the disease itself.

    It's really hard yakka....! Don't despair. We are all in it with you. You need a lot of courage and a clear head to fight back.

    Perhaps now you can give yourself a bit of break and try and reflect on just how you might be able to take control and resolve some of the issues that you're facing. Don't beat yourself up so much! Try and concentrate on what needs to be done to make it work. There's no point wasting all your precious energy on people who aren't worth a light.

    Get centred - focus all your energy on the job ahead. You can and will make a huge contribution once you take control of the situation. Get yourself calm, cool and decisive - then go for it.

    Best wishes, Jude
     
  3. Chesca

    Chesca Guest

    Dear Jude

    Yes it was rather a tirade but having got it off my chest I have to tell you I had the first night's peaceful sleep in an age - so did my poor partner who would have got the lot - the uncensored version, yet again. I should have done it a long time ago! And it saved on the crockery.

    Thank you for even taking the time to read it and for your kind words of support. I know I need to focus, keep a clear head for Mum's sake but some times I feel like Don Quixote. All I need to know is that she is safe, that is the bottom line and most times I am able to accept that this is the best, but other times ......well, you know.

    On a happier note, having realised the value of getting these things out, life may be a little less strained for my lovely partner - he has just said to me Wow, if that is what it takes, type until your fingers are down to the knuckle!

    Many kind regards
    Chesca
     
  4. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Shattered Glass

    Look on the bright side, Chesca... imagine what would have happened last night if you had a touch screen PC!

    You'd have to buy a new screen today. ;)
     
  5. Chesca

    Chesca Guest

    Dear Bruce

    You look on the bright side if that's what lights your candle. I'm still cleaning the windows. Hopefully, I will assume the state of pink and fluffy in due course.

    Kind regards
    Chesca
     
  6. Jude

    Jude Registered User

    Dear Chesca,

    I had dinner in a Greek Restaurant in Sydney once and after the meal we were allowed to go into the back yard and throw plates at the wall. It was terrifically satisfying...!! Well, why smash your own crockery when you can use somebody else's?

    Really glad to hear that you are feeling so much better. Pink and fluffy sounds good to me.

    Jude
     
  7. Geraldine

    Geraldine Registered User

    Oct 17, 2003
    143
    Nottingham
    Hi Chesca

    keep ranting! This is the only place I have found where I can tell it how it is. Friends ask how Mum is but they don't really want to know the answer, if they knew anything about Alzheimer's they wouldn't need to ask how things were going......

    Geraldine
     
  8. Chesca

    Chesca Guest

    Dear Geraldine

    A soulmate!!! Thank you for even taking the time to read it. I have to say I felt a whole lot lighter after offloading some of the anger. I'm sick of being told I have to accept the inevitable, that I'm trying to control the uncontrollable when I'm not - in fact I find it downright patronising. I refuse to accept that 'this is as good as it gets' and other meaningless platitudes. I DO accept that Mum is mentally ill; I just don't and won't accept the 'it'll-do' school of thought that seems to prevail amongst the big money organisations when dealing with such fragile and vulnerable people who we love and have cared for so much. If this makes me a rebel then maybe I've found my cause. God only knows...and he ain't tellin'.

    Gangs of best wishes to you and yours

    Chesca

    p.s. just got back from a short break which was supposed to be supported by a sister coming to cover supporting Dad in my absence. Prior to her arrival I had a £20 bet on her letting me down. I'm having a glass of wine on my winnings! Cheers!
     
  9. Jude

    Jude Registered User

    Dear Chesca,

    I'm wondering if it would be a good idea if we had two threads here entitled 'Whinge of the Week' and 'Best Happy Event of the Week'. It really does help to post the ups and downs.

    Best wishes, Jude
     
  10. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Chesca
    you have many soulmates on this site.
    Many problems are common to all of us so we do understand each others problems and worries,a problem shared?
    I am let down on a regular basis by a son,I just have to accept what I get.
    It's day to day Chesca
    very best wishes
    Norman:(
     
  11. Chesca

    Chesca Guest

    Dear All

    As I appear to have offended some long-suffering carers by venting my spleen, I am taking this opportunity to apologise for not being made of the stuff of martyrs. I put down in words what I felt as a way of exorcising my sense of frustration and sadness and by sending it into space thus gave it over to a higher being in order to let go. I am amazed that anybody bothered to read it after the first sentence, particularly those having endured a chuckle muscle by-pass.

    I do, however, believe that we all have the right to grieve in our own way without fear of censure. Mine's blowing my stack then laughing at myself - whatever steers my handcart. I have nothing but respect and admiration for carers, call it a self-admiration society. But I am still coming to terms with 'losing' my mum and if I want to stand in the middle of a field and rail at my God and scream until there is no breath left in my body that is what I will do until I feel better, and braver to face her with a smile on my fat gob and thank my good fortune when she smiles at me through her brown eyes.

    I would also like to take this opportunity to proffer this advice to those I appear to have bored: if you see my name attached to anything, just don't read it - it may more than likely be a whinge, just me getting something off my not-inconsiderable chest, which is what I thought this site was for.

    Kind regards
    Chesca
     
  12. Kriss

    Kriss Registered User

    May 20, 2004
    513
    Shropshire
    Dear Chesca

    I don't get the impression that you have offended anyone here. Sometimes you can read things the wrong way when you're one degree below par and we all get that way on a regular basis.

    Carry on ranting, and give that keyboard some more stick - if it works for you then go for it!

    Best Wishes

    Kriss
     
  13. Chesca

    Chesca Guest

    Dear Kriss

    For God's and other members' sakes, don't encourage me!

    There are millions of people out there who put up and shut up with great resilience and stoicism and who, if I could find it in my soul to accept that I should be other than the person I am, I would envy. I think I may have irritated them to the pits by salaciously baring my emotions. I know that they have experienced or/and are still experiencing awful times with a far greater dignity than I could ever muster, my beloved Dad is one of this army.

    Anyways by typing up a storm my speed should soon qualify me for a job doing the classified sport results on Saturday afternoon telly. So I'll keep those digits flying.....

    Hollywood kisses all round

    Chesca
     
  14. Jude

    Jude Registered User

    Dear Chesca,

    Oh dear! Please DON'T think for one minute I was having a dig at you with my comment about 'Whinge of the Week', etc. The whole point of this forum is to be able to let off steam. It's so helpful to be able to do that here - and also know that everyone will empathise with the situation. Read some of my posts - I can really let fly on occasion.

    I really do apologise if you felt offended by my comment. I didn't intend to hurt you or diminish you in any way. My point was that it might be helpful to have two threads devoted to sad stuff and happy things so that we could go directly to those to give support immediately, without important issues being lost amongst the general mail.

    Jude xxx
     
  15. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
  16. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Chesca
    I have a little spot at the top of the garden where I go and practice languages.
    Mainly nautical terms that I learned years ago,not fit for a lady's ears.
    Our neighbour is nursing a sick husband not AD,but she confessed to me that uses fruity language at times.
    I haven't heard any new words through the fence but I'm hopefuul
    Keep ranting,let it all hang out,do your own thing, whatever eases the pain a little.
    Very best wishes
    Norman
     
  17. Jude

    Jude Registered User

    Dear Brucie,

    Just had a look at the 'Pain of the Day' thread. I was in Bali when you started that in February. It's a much better title than 'Whinge of the Week' but I'm glad you know what I meant. [Sorry folks, I can be about as subtle as a flying mallet sometimes!]

    Is there any way to keep 'Pain of the Day' up front on the forum so that it doesn't get lost?

    Best wishes,

    Jude
     
  18. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    I've made it sticky, so it will stay there.

    No, not a better title, just a different one, reflecting the other side of the coin... we get pains, so we whinge, shout, mow the lawn, eat chocolate, write poetry, etc.
     
  19. Jude

    Jude Registered User

    Dear Brucie,

    Can you do a sticky for 'Highlight of the Day' too? That way we can whinge and rejoice in equal amounts.

    Jude
     
  20. wendymay

    wendymay Registered User

    Jul 19, 2004
    1
    chelmsford
    Dear Chesca,
    I read your outpourings with great sympathy as you touched a few chords. I was especially moved by your reference to the way you feel about your father. That is EXACTLY how I felt--we were not allowed to "interfere" in any way. He put his pride before her needs.
    Luckily she had a great social worker , organised at my insistence, though mother had to be told she was my friend!! So when the inevitable crisis arose, a place was found in a home which I had already checked out. We gave father an ultimatum---either she goes there now, or the health services will soon put her in the local "hospital" which was once the asylum and still seems like one! Needless to say he finally caved in, and shortly after he stopped visiting her because it "upset" him. As always, his feelings came first. No matter that it upset me.
    Like you I am still bitter about this despite the fact that this took place 8 years ago. Mother spent 7 years in the home, cared for as well as possible, and certainly better than we could have coped with at home. She died last year. I now have the responsibility for my 84 year old father, who relies on me totally though still thankfully lives independently. Hate is perhaps too strong a word, but resentment --yes.
    That's my tirade!
    I do hope you are getting support from the Alzheimer's Society, and also local carer's support teams. They will let you let off steam also.
    Good luck from one who has been there.
    Wendy
     

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