A memory test or not a memory test ?

Discussion in 'ARCHIVE FORUM: Support discussions' started by janjan, Jan 29, 2007.

  1. janjan

    janjan Registered User

    Jan 27, 2006
    229
    Birmingham
    :confused: Dad must have got lost in the system, because for 3 yrs he didn't have a memory test. Untill i joined tp i didn't know he was surposed to have one every 6 months or once a year, mom oviously hadn't been told about them because she never mentioned it, and the clinic was only down the road to where they lived. Well he had a test about 3 months ago, or rather he wasn't even asked anything at all, because oviously to the doctor that saw him realised he hasn't got any memory left so he never even bothered asking him anything. When i questioned why he had'nt been seen for 3 yrs, he just side tracked my question. Well i was imformed today from his n/home if i would like to go with dad tomorrow to the memory clinic that he was changed to which is nearer his n/home. Well have taken a day of work tomorrow, because wild horses wouldn't stop me from going just to listen to what they have to say for themselves this time. You could kick yourself sometimes, when you realise the mistakes you make.:mad:
     
  2. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Janjan

    My husband hasn't had a memory test for about three years, because of his lack of communication, so I wouldn't worry about that. What is concerning is that he hasn't been monitored.

    You're quite right to go to his examination tomorrow. It will give you chance to ask all you want to know. Is he on medication?

    Don't beat yourself up, you haven't made any mistakes. The system has failed you and your Dad. Let's hope you can put things right tomorrow.

    Let us know how you get on.
     
  3. alfjess

    alfjess Registered User

    Jul 10, 2006
    1,213
    south lanarkshire
    Hi Jan Jan
    Mum has never had a memory test, although 3 physco geriatrics have tried to administer it. She cries, gets hysterical, or has panic attacks and they give up.
    Don't blame yourself for lack of organisation in the services, but I would be asking questions, about why your Dad was lost in the system and if anything could have been done, EG medication
    Alfjess
     
  4. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    9,222
    Beating myself up, pros and cons

    When memory clinics first came about, a few years back, I was aware, because of the job I used to do, that they were something new and, as I thought then, important. However it took me about two years to get my relative seen at one. I beat myself up that I hadn't sorted this out earlier. She was 'diagnosed' as having Alzheimer type dementia' after two visits and was prescribed Aricept, which she remains upon. I kept thinking, I should have pushed for her to be assessed earlier, especially as I knew the system existed and I should have been on top of things.

    In recent months I have begun to beat myself up from a different angle :)confused: ). At the point last year where she was deemed suitable for nursing care, the fact that she had the label of Alzheimers meant that she could only go into nursing homes registered for people with dementia ( EMI nursing home), but we had also been told by the PCT ( health authority) continuing care assessor that it would be cruel to put her into an EMI nursing home. This cut no ice with the general nursing homes we looked at because once they read that she had the 'Alzheimers-type dementia' they would not accept her despite the fact that she has absolutely no challenging behaviour of any kind.

    So I began to beat myself up about having taken her to the memory clinic at all. It had resulted in a label that has been more troublesome than helpful. They diagnosed Alzheimer's on the basis of two pretty primitive memory tests and I couldn't believe how approximate the labelling process actually is. From it, however, a whole slew of issues have arisen, which could possibly have been avoided if I hadn't cleverly put her through the memory clinic routine in the first place.

    Yes she got the Aricept, but I do wonder how much worse she would have been without it. I don't know.

    There are people in ordinary residential homes who have worse memory loss and problems than my mum but ordinary care homes and nursing homes risk compromising ther registration status if they take people whose notes record that they have Alzheimers. And from what I saw of the EMI nursing and residential homes in our area, they were scary and unstimulating places for someone like my mum. It was my shock at seeing these homes which made me question whether I had been wrong to ever get my mum to go to the memory clinic and attract that damned Alzheimers label. It is not that I am trying to deny that she has memory problems: she certainly has, but she also has retained a whole lot of her personality and social skills, and I dreaded the thought of her going into the unpromising surroundings of specialist EMI care/nursing homes. I still do.

    Having said all that, there are ways of getting admissions to ordinary nursing homes depending on the principal nursing need, and my mum is in an ordinary nursing home now. I don't think she has missed out on specialist care that might have been available in an EMI nursing home. I am a thorough-going sceptic now, you see.

    Access to the Aricept was the main benefit of the visit to the memory clinic, but it ( the visit) was also the start of a long scary journey. Skye is right. It's the monitoring that matters. On the whole I would try not to beat yourself up. The system is bad enough without us all administering our own bruises! We do what we think is right at the time and it is not our fault if there is no perfect answer or things are worse than we anticipated. We are not the professionals, just loving relatives wrestling with a really tough set of problems in an imperfect care system. Look after yourself, and good luck.
    Deborah
     
  5. janjan

    janjan Registered User

    Jan 27, 2006
    229
    Birmingham
    Thanks for all your replies. They didn't do the memory test on dad because they showed me the paper the questions was on, to see if i thought he would be able to answer the questions, but i said he wouln't be able to understand what they was asking of him.
    We went into see the doctor, and he was concerned that the seditive he was on during the night might be affecting his balance, so over a period of three months he will be coming off them, and we will go back in 3 months to see how he is then.
    Dad has been on aricept for the last 4 yrs. He has Alzheimers with lewy bodies and slight parkinsons. Doctor said he will keep him on aricept, because allthough it proberly isn't helping with his memory now,
    it helps with his lewy bodies. Dad is still mobil but has become unsteady on his feet, but that could be the sedative he was put on causing him to be more unsteady.
    Before we went into the clinic, i asked mom had dad had a test before. I didn't think he had had one. She said he had one at the clinic that is near her house at the begining of his illness, after they signed him off at the hospital to the clinic. So it had been nearly 4 yrs ago. Mom said he got about 12 out 20 questions right.
    3 months ago they saw him again, they didnt bother with the test, and the doc there said he was refering him to a new clinic nearer to his n/home he is at now.
    It was because he moved into a diffrent area, that they saw him again so soon after his last appointment 3 months ago.
    I think i will always beat myself up about something, because you always think what if i would have done this or maybe that. As many of us here does day in day out, it goes with the territory.
    Iv'e got used to him in a home, but i don't think i will ever get over it.
    They look after him well there, and it was his saftey that mattered in the end.
    It's the guilt that so hard to deal with, the knowing that i did all the runing around, sorting things out for dad to go into a home. Regardless that mom signed him in , just feel so guilty about it. Even though i know dad wouldn't have been happy if mom would have become unwell looking after him, it's still there the guilt, eating away at you.
    Sorry this is so long but i needed to have a rant and a good cry.
     
  6. Kayla

    Kayla Registered User

    May 14, 2006
    621
    Kent
    A doctor came to my Mum's house after she had hallucinations and she scored 28 or 29 out of 30 on the Memory Test, which he said was good for her age. She can still have quite a reasonable conversation and yet she has absolutely no idea of the time of day or whether she has had a meal or a cup of tea.
    I think people can be at many different stages of dementia at the same time and it can be difficult to define where they should be. Mum is in the general nursing section of her Nursing Home at the moment and is settled there. She would have nothing in common with those in the EMI section and would have nobody to talk to.
    Kayla
     
  7. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    9,222
    Jan Jan, I'd say that you have acted absolutely properly, in trying to get your dad the best care that you could. It simply isn't always possible for people with dementia to be cared for by one person. It needs skilled team work and lots of it. And as you rightly say, your dad would have been mortified to think that he had undermined your mum's health. You should be much much kinder to yourself and congratulating yourself that you have achieved so much and so successfully. Just the phrase, 'they look after him well' is a huge achievement. Well done , Jan Jan, for all your care and concern and commitment. ( I hope that doesn't sound patronising) . I just want you very much to think positively about yourself and to recognise how much you have done. Take a deep breath and think about all the the really hard issues you have had to deal with, ( more than me, I can tell you and I think I've had a b....y hard time!) Don't cry, get some rest and try to keep healthy. Stupid advice I suppose, but what I mean is, is it is hard to be emotionally resilient if you are feeling run down.
    Big hugs, Deborah
     
  8. janjan

    janjan Registered User

    Jan 27, 2006
    229
    Birmingham
    Thanks for making me think of the positive side of things, i'd forgoten about how optomistic i used to be,
    At the begining of this year i decided to do something for me, so after 30 yrs of smoking i finaly packed in.
    I so wanted to pack up for such a long time, and it was so nice to be able to tell dad i had managed to kick the habit.
    He always used to nag me about it.
    Maybe the reason i feel down is part of the withdrawal symptons, i don't know. But i have been feeling very low latley.
    So stupid of me for not realising why.
    So i am now going to congradulate myself for being able to tell dad i'd kicked the habit while we still have him with us. Thanks Deborah for making me think of the positive things we so forget when we are busy caring for our loved one's. :)
     
  9. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Janjan

    Congratulations on stopping smoking. You should feel good about yourself, it's not easy, I know.

    And you've done so well with your dad. I'm sure it means a lot to him that you're looking after your own health.

    Stay strong and positive, you're doing great.

    Love,
     
  10. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,594
    Kent
    Hi janjan, Well done you for stopping smoking. I smoked for 40 years and considered myself addicted. I once went to a daily clinic at our local hospital to try to stop. During this time I too got very low, would cry at the least thing and felt really depressed. It got so bad I phoned the helpline and was told I felt like that because of the lack of nicotine and what the nicotine had made me into......an addict.
    So when you feel down, if it`s because of nicotine, try to remember that this is what smoking has done to you.
    Good luck. Sylvia xx
     
  11. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    When we got the memory clinic appointment (last March) I think it was probably because of neighbours phoning the surgery, (doctors were taking more notice of neighbours than of me then).

    My mother didn't complete the test, got fed up with "too many silly questions", and she phoned the hospital herself and cancelled the next appointment as she said it was "a waste of time". Perhaps she was right.

    Lila
     

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