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  1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Welcome to Talking Point - introduce yourself here

Discussion in 'Welcome and how to use Dementia Talking Point' started by KatherineW, Jul 22, 2013.

  1. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,586
    Kent
    Hello Annie. Welcome to Talking Point.

    I accept the person who is causing your mother distress has little or no control over his behaviour but your mother deserves to have her rights respected. It is strange carers have found this person`s behaviour disturbing and yet the manager says there have been no reports .

    It is possible there is a confidentiality issue here on behalf of this man, which maybe why the manager seems defensive.

    All you can do is put the matter into a formal letter of concern, rather than complaint. Say how much you appreciate the home and the care your mother receives but emphasise how distressing this behaviour is and hope something can be done to remedy it.
     
  2. Morganlefay

    Morganlefay Registered User

    May 20, 2014
    69
    Buckinghamshire
    I am new to this, is this the right place to say hello ?

    Hi, I am usually very reticent about this but today feel like having a go. I am 68 and have a lovely husband aged 71, who was diagnosed in Feb with Alzheimers. He is fit, healthy, slim, good looking, funny, a lovely father and grandfather. But just a bit absent minded. His diagnosis and how they told us about it was handled so badly by the local mental healthcare team that I made a formal complaint. Since then he has been taking Aricept and is markedly less absent minded. We do not talk about his condition, and he is ignoring it. The local GP is also not minded to discuss it, so we have swept it under the carpet where it will stay until /unless something happens. he does not seem to be getting worse, tho he is absent minded and I find myself getting a bit sharp with him. We have two grownup daughters who know about the diagnosis, but they too don't want to think about it. Mostly all this is OK, but just today I felt very much in need of advice as to how to deal with this. I am constantly on the lookout for problems, but apart from his constantly forgetting pin numbers and not understanding things I say (not sure if this is his condition or deafness) he seems fine, though I feel as if I am constantly 'on duty' to make sure he's OK, and this can only get worse. My 94 year old Mum had very severe dementia for two years before she died, and I can't bear to think of him becoming like her - though I do know that no two cases are really alike. Phew; if you read to here, thank you !
     
  3. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,659
    North West
    Hello Morganlefay, and welcome to TP.

    First, this is absolutely the right place to say hello!:)

    As you say, no two people are the same. There is no right or wrong way to deal with this problem. I think the way you and your family are dealing with it is perfectly fine. You are bound to worry about the future - we all are - but I'm sure you know deep down that this is an unprofitable pastime.

    Try to concentrate on all the things that your lovely husband can still do. Try to make sure that you both enjoy life as much as you can.

    You will find there's a lot of very useful information and loads of support on TP. Use it when you need it and contribute your own thoughts as you work out ways to make life easier.

    Take care.
     
  4. Morganlefay

    Morganlefay Registered User

    May 20, 2014
    69
    Buckinghamshire
    Thank you !
     
  5. Flying Martin

    Flying Martin Registered User

    May 21, 2014
    1
    Yorkshire
    Hello Everyone,

    I am new to Talking Point and would like to introduce myself. I am a 58 year old bloke looking after my 85 year old Mum. I have been doing this for 10 years and as you all know things can become harder and harder with time. I have had the added complication of a close family member who has taken financial advantage of my Mum. I am a health professional by training but this only goes part of the way to helping. I have learnt a lot which may be of help to others and I am sure I can also learn a lot from this group. I look forward to talking with some of you.
    Regards,
    Flying Martin
     
  6. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,659
    North West
    Welcome to TP Martin.

    I'm sure you will have much to contribute and, as you say, there's an awful lot that can be learnt here.
     
  7. Julie:)

    Julie:) Registered User

    May 20, 2014
    3
    Hi I am new to talking point. I look after my mam now full time and all thou I've done many years working in the care profession I am still learning a lot looking after her and help and advice will always help and becoming a member is my first step . Thanks :)


    Sent from my iPhone using Talking Point
     
  8. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,659
    North West
    Welcome to TP Julie.

    I'm sure that, like Martin, you will have useful contributions to make and that you will also avail yourself of all the advice and support you can find on TP.
     
  9. deltaqueen

    deltaqueen Registered User

    May 22, 2014
    0
    Hello!

    Hi everyone!
    Just a few words to introduce myself. I am a dementia trainer and care manager and have recently relocated from England to Wales. Dementia care is my passion and I am constantly striving to "make a difference" to the lives of people suffering from dementia and their carers and families. I look forward to reading your thoughts and comments - and adding mine of course! If anyone has a kindle I can suggest some thought provoking books for download. Most of the good books are from the USA. :)
     
  10. Anna83

    Anna83 Registered User

    May 22, 2014
    0
    Hi everyone !

    What a great site !

    My name Is Anna . My nan suffers from Alzheimer's .

    I have worked in care before but I am waiting to start my new job as an activities co ordinator in a local care home.

    I can't wait as this means I can still work in care but also be creative !

    I am also hoping to set up a freelance activity group .

    Nice to meet you all !

    Xxx


    Sent from my iPhone using Talking Point
     
  11. Betty 2

    Betty 2 Registered User

    May 22, 2014
    0
    New member

    Hi my name is Elizabeth , my grandpa and maybe my gran (being tested at the minute ) have Alzheimer's , my mum does most of the caring for them and help out when I can.
    We are finding it very hard as all they do is sit indoors and do nothing more , my grandpa can't go out now as he forgets what he goes out for and my gran finds it difficult to understand him and has no time for him , my grandpa speech is getting worse and it frustrates him and my gran because she can't understand him.
    I was just wondering if their was any ideas which could get them out and about and be looked after as well
    Thank you
     
  12. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,659
    North West
    Hi deltaqueen. Welcome to TP.

    I'm sure that someone with your experience will have a lot to offer members of TP and that you will also find food for thought as you read so many people's experiences.
     
  13. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,659
    North West
    Hi Anna. Welcome to TP.

    You are one of a number of people joining recently who has experience of working with people living with dementia. I'm sure you will find that you have ideas to share and that you will find so many of the stories recounted of great interest.

    I do hope that you get your activity group launched successfully. There is always a need for more of these groups but sometimes getting the message to peole who would benefit is a challenge.
     
  14. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,659
    North West
    Hi Betty. Welcome to TP.

    What brings you here is sad. It sounds as though there is a lot of frustration involved and it isn't difficult to empathise with all of you. I'm sure that there are members who will have ideas that might help and you may wish to start a separate thread on this. If so, follow this link:

    http://forum.alzheimers.org.uk/forumdisplay.php?70-I-care-for-a-person-with-dementia

    then press the start a new thread button and away you go.

    It also occurs to me that several of the new members we've recently welcomed may have ideas for you.:)
     
  15. deltaqueen

    deltaqueen Registered User

    May 22, 2014
    0
    Thank you!

    I am always ready to help in any way I can - I have learnt from past experiences that sometimes even a few words of encouragement can help - even if it doesn't seem so at the time. A lot of people tell me that just being able to "vent their frustrations" or cry, or complain, can sometimes help. Also, if anyone needs any advice I will try to help.
     
  16. littlebylittle

    littlebylittle Registered User

    May 21, 2014
    1
    Ontario, Canada
    My husband has PCA

    Hello
    My husband (57) was diagnosed with Posterior Cortical Atrophy in February. The diagnosis explained a lot of things but it was still a huge blow. Right now, he functions quite well on his own, however, his driver's license was suspended and that's one thing that has hit him hard as we live in a rural area. I work part-time and my husband has been on leave since February 2013 (he`s a teacher). We first noticed odd things 2-4 years ago. He had been complaining about his memory and his driving was alittle erratic (and scary). There is not alot of information on PCA here in Canada and nothing on Alzheimers Canada website. There are some days that we both get very emotional and other times we just laugh at life. We`re trying to take it one day at a time, which is very hard because always in the back of my mind I can`t help but wonder what and when it will happen. There are other members on this forum who are also caring or know someone with PCA and I`m hoping we can connect and share. Best to all.
     
  17. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,659
    North West
    Hello littlebylittle. and welcome to TP.

    I'm sure many of us have found that a diagnosis is hard to deal with however much, in some ways, we might have wanted it. As you say, taking one day at a time, is not easy but it is still something to aim for. And, since the precise future for any one individual cannot accurately be predicted, it seems sensible to try to adjust to changes as they occur. TP can be so helpful in this respect since there will always be members who have had similar experiences and are only too willing to offer support and advice.

    As you have already discovered, people with PCA and their carers are represented on TP and I hope you can get in touch with them. You could try to start your own thread here:

    http://forum.alzheimers.org.uk/forumdisplay.php?70-I-care-for-a-person-with-dementia

    Just click the start a new thread button and away you go.
     
  18. HughieM

    HughieM Registered User

    May 23, 2014
    2
    Hello Talking Point

    Just a word or two of introduction. My step-mother, aged 81, was diagnosed with dementia in March after being admitted into hospital with a T.I.A. and U.T.I. She was living alone at the time but has down been discharged into a Care Home as she has no other close family but myself and I am not able to look after her as I am a single man and go out to work. I have joined this forum to learn more about the condition and to see what help is available.
     
  19. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,594
    Female
    Dundee
    Hello HughieM and welcome to TP. I'm sure you will find the forum informative and you will receive lots of help, support and advice here.
     
  20. Timmoj

    Timmoj Registered User

    May 24, 2014
    0
    Hello I am pleased to be able to access this site. I am a professional working in continuing health care.i am aware of the distress and frustrations this can bring to families of people with a significant cognitive condition. I hope to be able to provide some support or advice.:)
     
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