1. PurplePoppy

    PurplePoppy Registered User

    Oct 3, 2005
    53
    My mum had a fall :( in the care home last week, and I spent many hours in A & E with her:eek: . I lost count of the times a new nurse or doctor would pop in and start to ask mum questions, to which I said 'you do know she has dementia?':mad:

    My mum broke a bone in her thumb and has aggrivated her arthritis in her hip, but it doesn't look like she broke anything in the hip. However, the specialist said that the hip was so bad with arthritis, the only option was a complete hip replacement, but that he agreed that with mum's various health problems and with the dementia, we'd hold off doing the op until she get's in too much pain for the pain killers to cope. I pray she manages with the painkillers.

    I reckon if she had to go in, I'd have to camp beside her bed, as I just don't see how she would cope alone.

    Don't get me wrong, the doctors and particularly the nurses were marvellous, but they just didn't seem to know what dementia meant and thought that they could talk to my mum like they would any other person.
     
  2. sunny

    sunny Registered User

    Sep 1, 2006
    598
    oh dear!

    Yep, hospitals for people who cannot voice their opinions is a very difficult place. There are a few more views from relatives under Researchers, Students and Professionals. Lets hope somebody is taking notice!:eek:
     
  3. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    I am sure that more people including medics are listening.
    Our GP practice is a teaching practice in co with Birmingham Medical school.
    I went to see our GP and was shown into his room ,he left me with two 4th year students who asked me daft questions,so I asked some some ,not so daft.
    I asked did they know anything about Dementia,they said it was included now in their training programme and they were learning about it.
    Next week I have been invited to join a PCT palliative care steeringgroup,palliative care for Demintia wiil be an advancement.
    Must keep flying the flag and banging the drum if it helps.
    I think we are getting there.
    Norman
     
  4. PurplePoppy

    PurplePoppy Registered User

    Oct 3, 2005
    53
    Thanks Sunny and Norman for your reply to my post.

    Norman I hope the PCT group went well. We certainly need people to 'bang the drum' as you put it.

    It amazes me just how many people have been effected by dementia. Since my mum went into the home, I have spoken with a lot of people and nearly all of them said they either had a relative who had dementia, or they knew someone who did, and yet it seems to be spoken of in hushed voices, a bit like cancer was years ago. I want to scream about it from the highest roof top. This bloody disease deserves nothing less than a full on fight.
     
  5. sunny

    sunny Registered User

    Sep 1, 2006
    598
    hushed voices

    Well, PurplePoppy has certainly hit nail on head, yes people do mention dementia in "hushed tones" as cancer was years ago, purely from the fact that dementia causes such mental health problems and there seems always to have been a stigma about mental health problems. So we as the relatives have to be quite open in talking about it especially to the younger generation in the family.
     
  6. Lucille

    Lucille Registered User

    Sep 10, 2005
    542
    #6 Lucille, Sep 18, 2006
    Last edited: Sep 18, 2006
    How true

    Quote: I lost count of the times a new nurse or doctor would pop in and start to ask mum questions, to which I said 'you do know she has dementia?'

    Hello Purplepoppy

    I agree with your comment above. I found myself in a very similar situation on Friday with my mum. After an interminable wait to see a doctor at hospital (4.5 hours in A&E (aka Dante's Inferno) with mum left on a trolley in a corridor and me administering her painkillers and AD drugs), we eventually saw the doc who was 'expecting us'. Obviously different time zones ... Anyway, I explained about mum's AD but he still sat down with her and asked her what medication she was on (her reply: none), any illnesses (her reply: nothing major). He had his back to me and I did feel, at one point, that he was shutting me out. However, I'd had a long day (as my intro to this reply illustrates ... via air ambulance from Europe) and I wasn't going to be ignored! I made sure he was aware of all mum's meds etc, but later on when the nurse came, she said, "oh Rivastigmine, that's an antiobiotic, isn't it?" :eek: So more explanation from me in between gnashing of teeth, but in a smiley sort of way !!

    Today, I have spoken by telephone to an SW at the hospital. It was clear to her that when she talked to mum, something was awry with her explanation of her needs. Some of the things I'd mentioned to the doctor and first nurse I spoke to hadn't been noted. We have now agreed that mum needs caring for mentally AND physically (broken leg), and that both those things will be taken into consideration for her rehabilitation. I finally feel someone is listening! Perhaps for those going through a similar thing in future, the medical profession could indicate by some sort of 'flag' on the patient file that the sufferer has AD/dementia and that a carer's explanation is needed for additional clarification and that all those facts are noted down to avoid repetition on the part of the carer. It would help alleviate some of the stress and keep (my blood pressure down) for a start!
     
  7. PurplePoppy

    PurplePoppy Registered User

    Oct 3, 2005
    53
    You are right Sunny, we have to shout about dementia, as it is the only way to highlight the lack of understanding, even in the medical profession.

    Lucille, I am so sorry you had such a stressful time. Sounds like you managed extremely well. I agree that the file should be tagged so everyone knows that person has dementia and that therefore a carer or relative must be asked any relevant questions. I was told more than once when I had asked 'you do know my mum has dementia?', that it was on the paperwork. I felt like saying well if you knew, why did you come in here asking my mum all these questions. It's like they don't realise what dementia means.

    I intend on writing to the hospital and voice my views. I really think that any files/paperwork should be colour tagged, so that everyone knows the person has dementia. If the person has been brought in alone, then immediately a relative or carer should be contacted to answer relevant questions. Again if the person is brought in alone, either a chaperone should be made available (maybe a charity needs to look into volunteers), and/or the staff need to constantly keep popping in to make sure the person is ok. I would just like to say here, that a person in another cubicle in A & E needed an interprater, and they got that, so why can't someone act as a chaperone? Also I think better training of dementia is required, and maybe even specific training on how to deal with people with dementia. I don't expect more than a bog standard reply to my letter, but you never know.
     
  8. PurplePoppy

    PurplePoppy Registered User

    Oct 3, 2005
    53
    Nada thanks for the info re Pals. It hadn't occured to me to use them, but I've got to go to the hospital on the 28th, so will have a chat with them.

    I know the WRVS have volunteers in the hospital, so maybe they could consider a chaperone service.

    I'll let you know as and if I get anywhere.
     

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