1. Q&A: Looking after yourself as a carer - Friday 25 January, 3-4pm

    As a carer for a person living with dementia, the needs of that person will often come before your own, and this can mean that you don't always look after yourself.

    However, it's important for both you and the person you care for. But how do you do that properly?

    Our next expert Q&A will be on looking after yourself as a carer. It will be hosted by Angelo from our Knowledge Services team, who focuses on wellbeing. He'll be answering your questions on Friday 25 January between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

TIPPING POINT

Discussion in 'I have a partner with dementia' started by maryjoan, Nov 21, 2018.

  1. wightdancer

    wightdancer Registered User

    Mar 15, 2017
    6
    Yep, I get that as well every day. My wife will walk around the house picking up all sorts of bits and bobs and say we need to get going home. Replying that we are already home is not a suitable answer so I say lets have a cup of tea or have some food or anything to deflect it Lucky are the days when she will sit and watch tv for more than 15 mins at a time, most days she is very active even after a long walk she will still wander around the house 'collecting' things and saying 'Lets go home now'.
    Being a carer is quite a challenge!
     
  2. AliceA

    AliceA Registered User

    May 27, 2016
    1,232
    Such a good and clever idea, Grahamstown. Much of what we have to do is reduce anxiety. I made a mistake yesterday and mentioned I could not find something, any loss causes anxiety so a very noisy search was made in all the unlikely places. Peace did not reign until it was found, a plant had been moved a little and it was behind that.
    This clingy behaviour is the same, I am lucky as our home is very compact to I can be heard, hearing aids willing, but I can hear unusual sounds too. Rather like when children are young, one tunes in.
    My secret weapon at the moment is the TV with headphones this means he is occupied and I can sit near often looking at Talking Point and shopping via the iPad.
     
  3. kindred

    kindred Registered User

    Apr 8, 2018
    1,872
    The business about social care and dementia etc is supposedly being covered in the green paper still to come and postponed from last summer!! I know, I know, it is depressing isn't it. One day .... with love, Geraldinexxxx
     
  4. AliceA

    AliceA Registered User

    May 27, 2016
    1,232

    I felt the same about the 'master plan' just another deflection like the Kent lorries to avoid Brexit talk.
    I have just answere an earlier thread about the chair in front of the door. Not really awake!
     
  5. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    704
    East of England
    Learning ‘dementia speak’ is challenging, not helped by the feeling that if you ‘give in’ to this you are accepting that your dear one is affected, when all the time you keep thinking it is a horrible mistake. I shall watch out for the green paper @kindred but I won’t hold my breath. Green papers tend to be slow growing plants and often get stifled before they can get going. I think the government are in denial too, about the extent and devastation of this disease.
     
  6. kindred

    kindred Registered User

    Apr 8, 2018
    1,872
    oh yes, it's all misdirection to take our eyes off the issues!
    Gx
     
  7. kindred

    kindred Registered User

    Apr 8, 2018
    1,872
    Oh yes, so so agree about the denial. Will following generations put up with the kind of caring we do? The personal sacrifices? But what can they do either? It is really dystopian. Lovely to hear from you.
    Love and best, Kindred (geraldinexxxx)
     
  8. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    179
    Female
    Basingstoke, Hampshire
    That is worth bearing in mind and I shall try to remember it.
     
  9. marionq

    marionq Registered User

    Apr 24, 2013
    5,106
    Female
    Scotland
    I'm no expert on what future generations will do as carers but it is clear that the duration of marriages is shorter and that when things get tough many just get going. I know I had a long spell before diagnosis when circumstances changed in my marriage. Clearly John was experiencing the beginnings of Alzheimer's but I didn't recognise it for what it was for a number of years. If our marriage had not been such a strong one I would have left.

    So here we are in our seventh year of diagnosis. The elements causing me such unhappiness are no longer there. John is around stage 6e and is 86 and is still living at home with me. I'm struggling at times and I don't deny it and I would never criticise anyone who can't do this. Who knows how long I can keep going? Future generations should already be pressing for change for themselves if not for other family.
     
  10. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    67,576
    Kent
    The younger generation to me seems to be taking responsibility for parents as we witness here on TP. We also have posts from very concerned and affected grandchildren.

    It`s why family behaviour is so important. The majority of children are conditioned by their upbringing . Even if people no longer have to settle for unhappy marriages their children will be influenced if their parents are compassionate.
     
  11. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    949
    Female
    South of the Border
    Just a quick query - what is Stage 6e ? Thank you
     
  12. marionq

    marionq Registered User

    Apr 24, 2013
    5,106
    Female
    Scotland
    If you go online to the Fisher seven stages of Alzheimer’s it gives a very accurate description in line with my experience so far. Not everyone agrees.

    That’s a good point you make Sylvia about the younger people on here.
     
  13. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,175
    I have looked at it and dad is a classic example, recently entered stage 5 if I remember right as he has stopped showering and is wearing the same clothes until I manage to spill something on him. He of course is totally unaware of this and thinks his clothes are clean on every day.

    It's not a pleasant read and some time next year I expect him to have trouble dressing.
     
  14. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    57,840
    Female
    Dundee
  15. karaokePete

    karaokePete Volunteer Host

    Jul 23, 2017
    3,866
    Male
    That's the same stages web-site I've posted a number of times. It is detailed but the stages are something that you can find with multiple definitions because they are so individual and fluid. Most bodies will be like AS and just use the simple 3 stage definition of early, mid, late.
     
  16. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    57,840
    Female
    Dundee
    I found this re the 7 stages. I felt Bill was in one stage in some respects and in another re other respects. In the end I stopped looking at the stage descriptions and just dealt with things as I faced them.

    I know that Pete has posted the AS link before. Just in case anyone would like to refer to it here it is again -

    https://www.alzheimers.org.uk/about...tia-progresses/progression-alzheimers-disease
     
  17. karaokePete

    karaokePete Volunteer Host

    Jul 23, 2017
    3,866
    Male
    Yes, the whole stages thing can be too generalised for some. I would put my wife at stage 4 but she shows some symptoms at stage 5 and even up to stage 6d, although I wouldn't put her above 4 if I consider the overall descriptions of these stages.
     
  18. AliceA

    AliceA Registered User

    May 27, 2016
    1,232
    I try to avoid labels and that includes stages. People differ so much and cannot be confined in a verbal box.

    I try to follow what I learned many years ago.
    Many places claim they offer person centred care. I fear it means many things in practice.

    Carl Rogers, the psychologist, spoke of a person centred approach and in particular 'positive unconditional regard'.
    That is treating a person in a positive way, unconditionally, and regarding the value each individual has.
    Every odd behaviour or demand has a 'reasonable' reason behind it.
    I am a complete amateur in our present everchanging situation but at the moment I find some of these ideas helpful.
    I try to deal with things as they come up, I assume there is a reason/cause for various behaviours and avoid (when I am not too tired to think!) any challenging response on my part.
    At the moment there has been an attempt to clean the soup maker with such a strong cleaner my eyes are watering. In my husband's eyes it was reasonable it needed cleaning.
    Many activities are governed by fear, I found with a neighbour I could reassure and distract more often than not.
    By not using too many labels I think the approach is more fluid and loving.
    People do not conform to labels and expectations and I have found (up to now) that this group of illnesses do not in my scant experience. We are all walking in the dark most of the time.
     
  19. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    179
    Female
    Basingstoke, Hampshire
    Having looked at the various stages my husband would possibly fit stage 5 in all aspects apart from clothes. He can't handle buttons, I have to do them up for him, but is happy to change his clothes. My problem is that he sometimes changes his clothes but hangs the dirty clothes back in the wardrobe. So if I notice he has clean clothes on I have to try and remember what he wore yesterday and go and retrieve it for washing.
     
  20. Starbright

    Starbright Registered User

    Apr 8, 2018
    324
    Female
    ...I so agree with you @AliceA I feel I’m walking in the dark and also on eggshells ;)

    Kindest A x
     

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.