Dont know what to do!!!!

Discussion in 'ARCHIVE FORUM: Support discussions' started by missy 2, Mar 1, 2009.

  1. missy 2

    missy 2 Registered User

    Feb 12, 2009
    west yorkshire
    Hi just getting the hang of TP,its the second time ive posted. Im in a bit of a dilema i care for my mum who has dementia, mum has recently been on exelon(week tomorrow) and this last week she seems to have got worse, she has carers going in at 5pm they have just recently started (carers go in mornings& evenings too. Last Wednesday arter carers had gone mum went outside to her friends house crying sayin she had been burgled she was going to phone the police, but mum finds it hard to use the phone now. My brother who lives near came up but he does not handle the situation w. ell. the next day mum was found wandering down her st after the carers had gone, she wont eat the food they give her says they throw it on the floor says they take her tablets, say they bring children in, she gets really distressed, says they are upstairs. Mum has seen things before like cats& people but has not been scared. She gets upset & says no one believes her! Last night her evening carer rang my brother to say mum was being akward& would not get undressed for bed, so my sister-in-law & brother had to go up & see to mum. Sorry to go on i rang social care direct yest, but they said have to get on to mums social worker tomorrow, dont know if its the exelon, will ring thememory clinic too.

  2. myheadisinaspin

    myheadisinaspin Registered User

    Nov 6, 2008
    marlow bucks uk
    gosh you have been through it this week,i dont really know what to saybut wish you all the best. something i'm dreading from some of the posts is mum is at the memory clinic next week and they hve suggested drugs to try, i'm dreading it really because of side effects, some of which you ahve mentioned. there should be an out of hours servive for this shouldn't there, as people with dementia dont close down sundays, bank holidays and weekends do they, there the times when it can feel like we are most alone. keep on posting and joining in the chats , there is always someone on here that will answer or give you guidance.
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hello Bev.

    If you are really worried and feel you can`t wait till tomorrow phone emergency Social Services.
  4. Scottie45

    Scottie45 Registered User

    Jan 25, 2009
    Hi Missy2

    So sorry to hear that things are not to good just now with your mum,cannot advise you on the Exelon,i would phone your out of hours dr just to get some advice on the Exelon,as you are sounding very worried,and for your mum to be wandering that must be a terrible worry,and don,t worry about going on you are allowed to go on you have alot to deal with.I really think Scoial care direct should have been more helpful is there not a emergancy S/W you can contact as the wandering is quite serious,I would call them again.I am sorry i am not much help but i am thinking of you and hoping you get something sorted soon.Take care X
  5. missy 2

    missy 2 Registered User

    Feb 12, 2009
    west yorkshire
    Thank you Bonnie& Grannie G, going to go over to mums to see how she is with the carers, i feel like mum i should be there as im her main carer. Will be on the phone first thing in the morning.
    Thank you,
    Bev xx
  6. missy 2

    missy 2 Registered User

    Feb 12, 2009
    west yorkshire
    Thank you Scottie, social care direct said that if mum wanders again & gets lost(ugh!!) to phone the police!!!! So glad i have finally posted on TP feel that im not alone, so good to have advise & support off people who know what its like!!
    Thank you
    Bev xx
  7. frederickgt

    frederickgt Registered User

    Jun 4, 2005

    Hello Missy.I feel for I have been there,is your mum on her own? if she is she will soon need 24/7 care,either at home with her loved ones or in a secure home,it is a painful experience,and you have my sympathy your mum needs love and a great deal of patience from you.I have heard Alzheimers described as the long goodbye,and that is very true.
    Contact your GP and tell hime of your mums wanderings,their are other drugs that can be tried like Aricept which worked for my wife,it is not a cure,there isnt one,but it does slow down the rate of deteriation You may be able to have respite with the help of Social services who can arrange for your mum to go to a
    day centre several times a week,giving you a break.
    I know it sounds cruel,but you need to see that your mum is secure to prevent her wandering,even if it means locking doors,she will have no sense of direction,and will soon be lost,
    neither will she have road sense on her own.
    Take care,be patient,your mum is very confused watch her.
    Let TP know how you are coping.
  8. Sam Iam

    Sam Iam Registered User

    Sep 29, 2008
    Iam not sure but I think (Scotland) there is an out of hours team I will make enquiries at work tomorrow (nhs learning disability services) and post tomorrow. Iknow this is of no use to you today Bev but should someone need it in te future.
    Hope you get something sorted out.
  9. langtry

    langtry Registered User

    Feb 23, 2009

    Hi Missy,

    Not to sure exactly,but the Exelon you mention I give to my wife each day it is in the form of a patch that has to be placed on the shoulder,I believe this is a relatively new drug for Alzheimers supposedly to give some kind of calming effect,it takes four or five days to kick in but it has helped to calm some of my wifes erratic behaviour,personally I think it works so be hopeful and see how it goes.
    I am also main carer and know just what you are feeling about all the uncertainties,but take heart there are lots of people ready to listen and help if possible.


  10. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    Your mother sounds like she might be having hallucinations. Is she on any other medications besides the Exelon? Try and get her to the doctor - she might require something more than just the Exelon. I think also that the Exelon requires a few weeks to get to its full effect.
  11. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    I would be considering 2 possibilities in your position
    1) that this is a side effect of the excelon. I have no idea if this is a common side effect, but when you start a medication like this and hallucinations etc increase then it has to be considered.


    2) That she has some kind of infection - either a urinary tract infection or something else.

    Either way I think you need to speak to a doctor about this.
  12. missy 2

    missy 2 Registered User

    Feb 12, 2009
    west yorkshire
    Hello, thank you all for your replies, i phoned our S/W this morning, was unavailable so they said she would get back to me, i then phoned memory clinic spoke to a nurse she told me to stop mum taking EXELON as it reacts differently with people. I have to ring back on fiday to see if there is any change. Got to mums this a.m mum was in good spirits, after she had her dinner she feel into a deep sleep could see she was tired, as i know she is not going to bed again as her feet & legs are swollen. When it was nearly time for me to go woke mum she was very confused asking for her mum, she had been in a deep sleep let her come round got mum up & assisted her to bathroom, she was still tired, and telling me to go to work!! Later when i got home S/W rang told her about mum wandering last week and how she has been & what they said at MC she told me she thinks its the EXELON or mum could have a infection (also nurse at MC said that) i dont think mum has a infection as she had one recently, but will keep i check on that. S/W said if not infection i will have to get back to MC & her and she mentioned emergency respite, dont know what to think of that, really scared., know we have to do best for mum, but she would hate that & i would feel as though ive let her down, sorry to go on(again)
    thank u all
    Bev xx
  13. Bristolbelle

    Bristolbelle Registered User

    Aug 18, 2006
    I'm not sure how good they are with queries about dementia but I have found NHS direct spot-on with other problems I've had. Even advising me to get my son to an emergency GP when he had a sudden polinidal abcess, which led to him being admitted and operated on within 12 hours! You sometimes have to wait a bit, and the call back can take 45 mins to an hour but as I say I have found their help and reassurance priceless. In my sons case it is possible that it even prevented paralysis or death as the consultant said the abcess was very close to my sons spine and the infection coule have travelled up his spinal cord.

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