1. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    Dear All, Just to fill you in on the visit from mental health lady who came out last week to do a assesment on mum we have been waiting since last july for one. She was very nice but there were endless forms and questions 2hrs in total.I could have cried a bucket of tears i think because i spend 24/7 with mum i had not registered how much her memory had deterated she hadnt really got a clue about anything past or present, she did the standard test on her and she was a lot worse than last time. I sat there and i just wanted to tell the woman to go,why did i put mum through this? i felt so cruel she was looking to me to help her answer how many children had she got she had no idea,yet sometimes i find it hard to believe theres anything wrong odd times she seems quite clear. Anyway the lady is coming back in 2 weeks i just wish at the moment i never started this and we would have managed on our own.I am so sad for her and yet she cant even remember her coming.STORM
     
  2. Kriss

    Kriss Registered User

    May 20, 2004
    513
    Shropshire
    Dear Storm

    Hang on in there. As you say, Mum can't even remember it now. We spend a lot of time not wanting to admit to even ourselves how poorly they have become and when we have to fill in forms or answer questions it's all too easy to play things down as it's us doing the real hurting.

    You've got this far so don't give up. You WILL need help sometimes and at least you will have set up the basis for getting some. It ain't easy but what is about this horrible disease.

    Chin up
    Kriss
     
  3. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Storm
    the feelings that you describe are not exclusive to you and are not unusual.
    I remember well my Peg when asked questions that she did not have a clue to the answers,looking at me with desperation in her eyes.I could have wept and told the consultant to get lost and left there and then.
    I felt just like you did,rotten swine,why did I start this,I can manage on my own,I don't need them.
    Two things to give you comfort and which did for me.
    Your mum won't remember the question sessions,soon forgotten,and you remember that you cannot cope alone for ever.
    Many of us have been through these situations and believe me
    (all together) day by day and I promise you it will get better although it is an up and down time.
    thinking of you
    Norman
     
  4. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    787
    Buckinghamshire
    You are in good company!

    Same here, Storm:
    Lady arrived at 4.30pm, "just a few questions" ...... two hours and 27 pages later, and with many notes written out in long hand, she said "right, that's done then. Now there's just another short one to complete". I was nearly bursting with unexpleted expletives, as I really could not see the point of it all: hubby is her client, as she put it, but he was only able to answer a very small percentage of her questions. I am amazed at how polite we both were, but hubby did point out after nearly two hours that he hadn't even had his dinner yet!
    Well, she was doing her job and carrying out instructions, and I was banking on Tony not remembering too much about it once he was able to concentrate on his meal. But I had just very slightly underestimated him! When our daughter visited a little later, he told her about 'the lady', and said that she asked hundreds of useless questions, and that he had "actually felt like dropping his trousers for her, then she would have had all the answers she needed!"
    I realised that this was not such a bizarre statement when I remembered her questions about him being able to dress by himself, visit the toilet, possibility of incontinence etc.
    Trouble is: we are likely to need them more than they need us, so we stick to our good manners and go with the flow. All par for the course.
    Good luck to all who are in the same boat!
    Carmen
     
  5. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi all, yes it does hurt, having to actually admit to others, outsiders, oficialdom if you like that things are deteriorating, but it is the only way they can get us the help we so badly need. As some of you have said, at least the sufferer does soon forget, or will do in a few days. Sadly, we do not and that old dragon guilt rears up and smites us down in tears. But when you look at it from the practical instead of the love angle, we do need some help, we do need to tell them what kind of help, we do need to tell them how often we need that help. If they don't ask, they can't help, so we have to say to the guilt beastie, be gone my fiery friend, you are not welcome here because I want the best I can get for my loved one and you ain't gonna stop me! Sorry, bit carried away there, just trying to make you smile as well as be practicle thinkers! lLotsaluv, She. XX
     
  6. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Storm - so many of us on T.P. could say " been there, seen it, got the tee shirt". Nothing helps - today it is you.

    Just hang on in there, loved ones do forget, if not today certainly tomorrow, and we all need help. The wheels of officidom grind exceedindly slowley, but you will be thankful in the end that you put the 'wheels' in motion.

    Norman says it all, with his 'day by day', so hang on in there, love to you and yours, keep smiling, Connie.
     
  7. Jude

    Jude Registered User

    Dear Storm,

    Because we live with AD every day we don't see the gradual decline until it gets hammered home during official question times. It isn't our fault, but there always seems to be a sense that we aren't doing enough or doing the right things. Hence the pointless guilt that we suffer.

    The sad fact is that AD is going to ultimately beat us all eventually, unless a miracle occurs.

    We have to try to banish guilt as far as possible by knowing that we are doing our absolute best each and every day.

    Jude
     
  8. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    dear all. thank you all so much for your repies,feeling a little better now . Ican live with the guilt and the pain if i knew there was goining to be something gained by it but i have the feeling that nothing really will be done just the same as when we had our assesments with s/s.I think mum is becoming less and less aware of whats going on around her and seems to be struggling more with finding the word she wants to use i know this is to be expected but it still hits you as it seems to be moving on faster now.My bigest fear is how bad is it going to get i can cope with the confusion and incontinance which is also getting worse but i am so afraid she will lose more mobility then what do i do. I know stormin norman DAY BY DAY but sometimes its a hard saying to follow. Did you all know this is supposed to be the most depressing day of the year? Well you do now. storm
     
  9. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dear Storm, thankyou for reminding us that today is "the most depressing day of the year"
    Have just had an awful meeting with the OT, absolutely useless and made me feel so bad.
    However, tomorrow will be better, so I will take time to calm down, and persue the matter further later in the week
    Keep smiling - Connie.
     
  10. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Storm, I don't know quite what you mean, will you want to keep your Mum at home if her mobility deteriorates? If you do, you can request a hoist etc. Mum had a bed/chair hoist, provided by SS. We also paid for a "mermaid" type bath hoist and a stair lift for her ourselves. But Storm, if it would be a nightmare for you, no-one would think any the less of you if you said that it was time to hand the job over and just have quality visits with her you know. Love She. XX
     
  11. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Connie, share the awful time you had with the OT on here with us, don't bottle it up, lets all have a mutter together! Love She. XX
     
  12. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Connie
    tell about the OT.
    Was it he/she, NHS or ss?
    Norman
     
  13. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Hi, thanks for your messages.

    OT was female, NHS. Nice lady, but clueless when it comes to dementia.

    Dearest Lionel has very bad spacial and mobility problems. She was due to assess him for a toilet frame. Seemed to think his problem was just physical, so suggested a raised seat. Could not seem to grasp that he has a problem with chairs, hence trouble trying to sit on the loo.

    She asked him where he sat in the lounge, and then commented that he was able to sit on the sofa quite easily, she thought I was mad when I said sometimes he sits on the floor if he misses the sofa.

    We then spoke about his falling out of bed. Solution, put a cushion on the floor to 'cushion' his fall. When I said I had difficulity lifting him back up, (I have had 2 ops. on my own back) she asked him if he understood instructions, he said "yes of course" But he does not understand instructions, cannot tell right from left, and has lost a lot of mobility on his left side.

    I could go on, but this after last weeks fiasco, when the consultant asked the G.P. to order a C.T. scan (All down to finance) and the G.P. did not think it was warranted.........UGH

    All this at a time when in Lionels own words "today is as good as it is ever going to get", why can't some people just use their common sense. I am p....d off battling to give Lionel the attention and comfort he desearves.

    Sorry to have gone on so long, and I know my troubles are small compared to most of you out there, but it makes me feel so inadequate. Must go and check on Lionel and make myself a quick cuppa - Cheers & thanks Connie
     
  14. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Connie, oh dear, I can understand your frustration now. Is the fact Lional has dementia not on his notes? if it's not, it darn well should be! Regardless of whether it is or not,Perhaps you could write her a note? Along the lines of thanking her for her time in seeing you both and outlining the problems you have with the things she suggests and why. If you explain that you are unable to speak in front of Lionel because you don't want to hurt him, that he honestly does not realise he is unable to do the things he tells her he can etc, she may just start to understand and hopefully, the penny will drop about what she needs to do to help you both. Best wishes, love She. XX
     
  15. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Perhaps the Alzheimer's Society would consider arranging dementia seminars for the health service, since so few members of the NHS - and government - appear to know what it is, and how it affects people?
     
  16. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Nada

    thanks for your clear description!

    I understand that "However, the priorities for the Society have to remain offering support and information to people with dementia and their carers."

    I simply reflect that the support could be better directed to those ends if the government/council/SS/NHS/tax-funded part of the scheme of things actually understood the condition better.

    Seems to me that, so frequently, AS is helping dementia sufferers and carers to understand and overcome major hurdles of all sorts put in place by those who should be there to help them.

    That's life, I guess....
     
  17. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Bruce
    what a good idea.
    In my experience the only ones that knew anything about dementia in the NHS were the staff directly concerned with mental health.
    Even then one of my concerns was the lack of activity programes,often just left sitting,sleeping without any sort of stimulation.
    Short of staff would be the answer I guess.
    all the best
    Norman
     
  18. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Bruce - Hear Hear on your comments. Connie
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.