1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

    Financial abuse can have serious consequences for a person with dementia. Find out how to protect a person with dementia from financial abuse.

    Sam, our Knowledge Officer (Legal and Welfare Rights) is our expert on this topic. She will be here to answer your questions on Wednesday 26 June between 3:30 - 4:30 pm.

    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.

  1. barraf

    barraf Registered User

    Mar 27, 2004
    308
    Huddersfield
    I was looking back at my diary the other day and upon reading my remarks about Margaret’s condition then, I have arrived at the conclusion that I am much better off today than I was then.
    Today she can hardly walk and then only with assistance, she cannot talk sensibly, is doubly incontinent, has to be fed, bathed, toileted, changed, dressed and undressed and to move any distance requires the use of a wheel chair. These things however are only physical and as long as I remain reasonably fit are comparatively easy to cope with.
    A few years ago it was a different story, she wandered, frequently getting lost, was argumentative, leading to violent outbursts and physical violence. She would accuse me of adultery, lying, stealing her money and anything else that she could think of. She was even then doubly incontinent but refused to wear pads so we had frequent accidents requiring changes of clothing and sometimes cleaning of carpets, chairs or beds etc. this would happen sometimes two or three times a day. Although she needed assistance with her clothing she would refuse it and I had to fight to get her either dressed or undressed. She would refuse to eat whatever I had prepared for the meal, sometimes for an entire day, and when she did eat she again refused assistance, spilling food on the table and down her clothing.
    This type of behaviour was not confined to home but would occur wherever we were if the mood so took her.
    The point I am making is that all change is not necessarily for the worse and although looking after Margaret may be physically harder, mentally and emotionally it is much easier. It also surprised me that I hadn’t realized how much easier life was until I looked back in my diary.
    So nil desperandum!

    Cheers Barraf
     
  2. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    15,988
    Toronto, Canada
    Barraf,
    I completely agree with you. Those challenging behaviours take so much out of a person.
     
  3. gigi

    gigi Registered User

    Nov 16, 2007
    7,788
    East Midlands
    Hello Barraf,

    I'm fortunate enough not to have had too many problems, so far,like the ones you mention. My husband is still relatively "easy" to care for.

    I do think a diary is a good idea..and your comments have highlighted the importance of keeping one..
    as a measure of how far we have travelled on our journey and to help us to put things in perspective.

    Take care!
    love Gigi xx
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,718
    Kent
    Hello Barraf,

    Oh how I agree with you. :)

    The challenging behaviour is a most distressing and tiring state, and every minute is a battle.

    I have not yet experienced the extremes you have, but the challenges I faced were enough. Now they have reduced and I have a less active husband, a more tired husband and a more amenable husband. I know where he is, he is relatively friendly and not as resentful.

    Life is much more peaceful.
     
  5. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dear Barraf, I realise Sylvia is agreeing with you when she says:

    I too agree, and yet as the battles grow less, and the behaviour becomes less challenging, so we are losing more and more of our loved ones very being to the ravages of the illness.

    Perhaps this is the only way, as sometimes you do ask yourself how much longer could you go on in that scenario. I know I wondered myself.

    With this illness it ia always a 'no win' situation.
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,718
    Kent
    I suppose on reflection it sounds quite selfish, for as those we care for become more manageable, it does mean their condition is deteriorating.

    It`s as well it is out of our hands. :(
     
  7. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Sylvia, I was not meaning my observation to be taken that way.

    I can never envisage any carer as selfish. We all have to deal with difficult behavorial changes at various times. All without training.

    It is therefore no wonder at times we question our own feelings, but as I say "carers - selfish" never.
     
  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,718
    Kent
    I know what you meant Connie, but even so, as I say my husband is easier to manage, I know it is because of deterioration. So to whose benefit his being easier to manage, his, or mine? :(
     
  9. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Well, call me totally selfish but I'll dare to share ...... Barraf - thank you for highlighting something I have reflected on myself many times ......

    On hearing of my mum's diagnosis, friends (to use that term loosely!) and acquaintances have asked 'Wouldn't she be better off in a home?' to which there are two very honest answers .... for her, "No way" ... for me, "Yes absolutely". Yes, I appreciate caring for a parent is very different but some days I am frankly so weary of meeting her demands before those of my own family .... of our whole lives revolving around her needs I wonder how much longer I can exist in this 'early-to-mid stage' ...... to think somedays I just want her to reach a point where she cannot 'point blank refuse' other help but will have no choice about it ...... but how on earth can I wish for her to deteriorate so that my life improves? Is it OK because I know deterioration WILL happen and there is nothing I will be able to do about it - so might as well get on with it? (Sorry, having a bit of a soul-searching time at present).......

    I swear this disease 'dances with the devil' .......:mad:

    Karen, x
     
  10. BeverleyY

    BeverleyY Registered User

    Jan 29, 2008
    716
    Ashford, Kent
    I'm in much the same situation - my Dad lives with us and we have 2 children aged 7 and 13. My Mum and Dad have lived here 5 years but sadly Mum died 9 weeks ago leaving us to cope with Dad and his Dementia.

    Despite his memory problems starting nearly 6 years ago, he is still in the moderate phase. Most days he is fine, but there were terrible times in January when we lost Mum where Dad was so confused etc. that I feared I would not be able to cope with him.

    Mostly now, he is doing great, although this weekend he was anxious because he has not been sleeping, he is now missing my Mum terribly. He kept saying he wanted to go out for a long bus ride, which of course I persuaded him not to do. He did get a bit miffed with me for not letting him go out alone, and then muttered that he was fed up and didn't want to live here with us anymore:( I sat on the stairs on Saturday and cried. I told my sister and my husband that I don't know how I will cope long term with my Dad as I am sure the stress and worry will put me in my grave.

    I do worry how I will cope. I do worry that my children are not the top of my list, I do worry that I am so miserable these days that my husband might get fed up with me - but, I never ever wish that my Dad would just get to the point where he deteriorates so I can justify to myself internally that his needs are beyond my capabilities.

    If my Dad stays like this another 10 years then I see myself as lucky, not cursed.

    I guess we all look at things differently, and we all do them for different reasons.

    Beverley x
     
  11. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    I don't think so!!!!!

    And therein lies a huge difference between us ....... as it always has been within my relationship with my own mother ... the feeding of parental needs by their children is stuff of decades of psychoanalysis - not needed here ....... but one of which I am very aware ..... hence the soul searching before it is too late for my own child .....:( and another generation loses out by 'feeding' her needs above all else ......)

    At which point I will go away and bury my halo as it is clearly too rusty to ever be polished up ....... :(

    Sorry, quite desperate times at the minute .....
     
  12. gigi

    gigi Registered User

    Nov 16, 2007
    7,788
    East Midlands
    There does seem to be something about Dementia which brings us all together..otherwise we wouldn't be here..

    Yet something that divides us too!!

    Maybe because all our situations are unique..

    There is no right or wrong..it exists amongst us and we all do our best according to our unique circumstances..

    But we learn from each other..and support each other..

    And vent our feelings and talk openly when needed..

    Surely that's why we're here?

    No haloes..no medals..

    Because we care..

    Love Gigi xx
     
  13. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Public apology .... Beverley - will you excuse me for having a bad hair day? (Having a 'feel like it's bad hair life' day, actually .... feeling a bit wounded and down at the minute - was gonna duck out with a PM but I owe you more .... sorry,

    Karen, x
     
  14. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Karen
    this disease is the devil in disguise,together with his portable hell.
    Hope you are feeling better today
    Norman
     
  15. BeverleyY

    BeverleyY Registered User

    Jan 29, 2008
    716
    Ashford, Kent
    No worries Karen.. this illness is **** for the sufferer and for the families.

    We all have bad hair days.

    I just try to battle on with my straightners and keep my hair under control:D It's definately frazzled I swear:rolleyes:

    Parents vs. kids is the biggest battle for me, and I read so much (especially here) the 'I can't look after my parent because I have a family of my own'... and I think.. God... are they pathetic.. or am I a superhero.. or do I think I do a good job, but really have kids that are missing out.

    I honestly don't know the right answer - I don't think they miss out, but I do think that my youngests bad behaviour is down to her being spoilt. Anything for a quiet life in my house most of the time I'm afraid.

    It's impossible knowing the right thing to do all of the time.

    Anyway... no need for an apology, and sorry you are having a tough time right now.

    Beverley xx
     
  16. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london

    I would also say that about my mother , my mother caring needs have got less challenging at home with me , even thought she can show some ant social behavior at day centre .


    If its OK to share from my experience I have just come to except that happening " we are losing more and more of our loved ones very being to the ravages of the illness "

    No one benefit really , but we have to think with a logic mind, that as the stages passes , it does get easer in caring .

    and its good to be selfish , because if we don't care for ourself no one going to do it for us , so how are we meant to care for are love ones , when we can't even care for ourself .
     
  17. barraf

    barraf Registered User

    Mar 27, 2004
    308
    Huddersfield
    Dear All
    I seem to have thrown the cat amongst the pigeons, quite unintentionally I assure you.
    I certainly don’t consider myself , or anyone in a similar position selfish, because I am finding life a little easier.
    We all know that our loved ones are going to deteriorate rather than improve, and to castigate ourselves because we find life easier because of that deterioration is, to say the least foolish.
    I prefer to think of this as another stage, rather than necessarily a deterioration, as Margaret seems less frustrated and on the whole happier than previously, and if she is happier then so am I.

    Cheers Barraf
     
  18. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    1,669
    NZ
    Hi Barraf

    I liken it to those "Phases" you go through as a parent. In someways as you pass through them it becomes physicaly easier yet mentally more challenging. It is easier in some ways being the parent to twins at 6 rather than at 6 months but boy the communication skills required now are incredible! (I'm thinking of applying for a job as a UN envoy.

    With Mum as she progressed it too became easier in many ways. The verbal abuse in the earlier days and emotional blackmail she went in for were real killers. But then she slowly disappeared and as she did so she became easier to handle. I do believe that it is a silver lining to the cloud that is dementia. Without this respite could we carry on?

    Mameeskye
     
  19. Nebiroth

    Nebiroth Registered User

    Aug 20, 2006
    3,518
    I've had a small experience of this. A couple of years ago Dad would become very difficult in the evenings because he would be insistant that it was the morning and that it was time for a wash, that we would be going out, and worst of all that "it is time for my tablets, if I don;t take them I will die". Nothing would persuade him that it was the same day still and was the evening, and that he;d already had his pills.

    These days, this doesn;t happen, because his awareness of time has completely failed. Hence we no longer have the rows over what time of day it is.
     

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