When Alzheimer’s really kicks in......

Discussion in 'ARCHIVE FORUM: Support discussions' started by Cliff, Jan 3, 2008.

  1. Cliff

    Cliff Registered User

    Jun 29, 2007
    North Wales
    Caring for my wife Dee has been easy up until now. It’s been physically tiring from having to do everything although this has been eased by help from the Alzheimer’s Society and Crossroads.

    Dee has been sweet and loving all through our married life of nearly 50 years – apart from the minor things that happen to everyone. And Dee has remained loving ever since I noticed something odd in her behaviour in 2004 and since her diagnosis of AD in 2006.

    But in the last month, her character has changed and I am seeing a different person who is not Dee. Blaming me for concealing the fact that we moving (which we are not) and for letting so many people be in the house (there aren’t any). She is convinced that I am having secret conversations but I am not. Dee likes the visits by ladies from Crossroads, the Alz Society and a cleaner lady so the “people” must be in her mind.

    Dee is devoted to a family member who is seriously ill, but it doesn’t seem to register in her mind how serious the illness is, which is totally out of character.

    So many changes and she is watching me all the time and suspicious. It’s not all bad though because she is still soft and loving when I tuck her into bed. So although the day may have been bad, there are still the last few moments of the day to cherish

    I will go on caring for, and loving her, but this last month has been very difficult.

    As the future now looks much bleaker than it did two months ago, I am using TP to vent my feelings as anyone without knowledge of AD would never understand.

    What a dreadful illness Alzheimer’s is.
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Cliff,
    All I can send are commiserations, from one carer to another, who has had a fair share of experiencing character changes.
    Love xx
  3. Margarita

    Margarita Registered User

    Feb 17, 2006
    I know how you feel those mood changes , I feel like mum enter a delusional space in they minds. sometimes I can feel like if I don't know if I coming or going .
  4. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    Dear Cliff:

    I am so sorry things are difficult for you. (I had wondered where you were).

    Whilst we understand that there will be deterioration it is hard to face when it happens. My D has changed too.
    He is generally very loving and gratitude still pours from him: ...
    BUT he does get very cantankerous and impatient which is so unlike him. Yesterday he was cross because I could not tell him who he had been talking to in the afternoon (two men he said). No way - we had been out and about catching up on shopping etc.

    He now swears ALOT and never did. He complains ALOT and never did. I think much of this is due to his general debility and lack of mobility. It frustrates him and he is too aware of his own limitations.

    We have lost two very dear friends in the past two months and he cannot remember the detail. He is extremely confused with who is alive and who is dead, from childhood onwards. I am frequently mistaken for his Mother!!!! (I am getting on but not 110!!).

    Sorry to ramble - just wanted you to know that we are sharing these problems although it does sound as if Dee has deteriorated more quickly of late.

    Take care of yourself Jan
  5. Lucille

    Lucille Registered User

    Sep 10, 2005
    Hi Cliff

    I know exactly what you mean about character changes. I've had the same thing with mum with a family member and I cringe when she asks and "how are you, have you been out anywhere?" When the answer is "no", mum says, "oh, you'll get over it." Relative can't walk, barely talk, spoon fed, hoisted for toileting/bathing/bed.

    It is so sad, as you say.

    Take care x
  6. Cliff

    Cliff Registered User

    Jun 29, 2007
    North Wales
    Makes me feel better receiving all these posts, thank you,

    I think the scary thing is that you can never tell when you are going to be met with petulance or accusations.

    Up to now, I could read Dee so easily but now........

    Dee is also having great difficulty composing a sentence and she gets annoyed when I cannot understand what she wants to say.

    But reading TP makes you realise just how many are up against the same wall'

    Love to you all,
  7. Linda Mc

    Linda Mc Registered User

    Jul 3, 2005
    Nr Mold
    I too had been wondering about you Cliff sorry things are more difficult.

    I am experiencing some changes too, yesterday it was so dark here all day by 10.30 am Vic locked up as he thought it was night! The fact he had only been up an hour and a half didn't register and of course he had no recollection of doing so...wonder how long it will be until I have to confiscate his keys?

    Take care

    Linda x
  8. Libby

    Libby Registered User

    May 20, 2006
    North East
    Hi Cliff

    I've found this to be so true Cliff - people at work may sympathise but they don't truly understand what it's like to have a loved one with AD

    My mum used to accuse my poor Dad of so much and he was so ill with cancer. At one point he could hardly walk and she would just say - all he needs to do is get up and use his legs and he'll be OK - she just couldn't comprehend the enormity of his illness.

    AD certainly is a terrible illness

  9. Nell

    Nell Registered User

    Aug 9, 2005
    Dear Cliff,

    When Dad was dying he would sleep a lot. Mum (with AD) was always criticising him for not being better company and talking to her more! :eek: Poor darling Dad!

    Can't help in any way but wanted to say you are in my thoughts, and send you some

  10. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Dear Cliff, I missed you!

    I'm sorry you've been having such a bad time. It's awful when what has been a loving relationship begins to fragment.

    But it helps to know there are others in the same position. Try to keep in touch, and let us know how you are.

    Love and best wishes to you and Dee,
  11. sue04

    sue04 Registered User

    Dec 30, 2007
    Manchester UK
    thoughts are with you

    Dear Cliff,
    I am new to this site, but my thoughts are with you, i understand the frustation of this horrible disease, my dad has it, and it is awful, truly awful, I am sending you lots of hugs.

    take care

  12. Taffy

    Taffy Registered User

    Apr 15, 2007
    Hi Cliff,

    I would have to say that this is one of, if not, the hardest things that I have dealing with, concerning my mum's dementia. If I hadn't witnessed this for myself...I would never of believed mum could be so nasty.

    I can only imagine how hard it would be for you and others having to deal with this after sharing such a happy life together. I know what you mean when you talk about 'suspicious' my mum became very suspicious and still is, to a lesser degree and it is just horrible to witness these changes.

    Cliff, I can only sympathise. Take Care Taffy.
  13. inkypink

    inkypink Registered User

    Jan 2, 2008
    how hard it must be for you cliff

    i don't really know if all you carers think i shouldn't really be on here as i'm not a carer for a family member i'm a paid carer in an EMI home so i see all these types of behaviour changes everyday but i can't possibly know what you are going through or how you feel as that person is your life & you didn't choose to have to go through all this with them.i chose to do my job because i care for people in general & even if i make a small difference its very satisfying to me.from experience i know that the mood/behaviour changes is the most diffult for a family carer to cope with as their loved one has turned into a total stranger but you just have to always remember that its the illness that your seeing not your wifes true personality.
    i really wish you all the luck & remember you need to look after yourself too!!;)
  14. Margarita

    Margarita Registered User

    Feb 17, 2006
    #14 Margarita, Jan 4, 2008
    Last edited: Jan 4, 2008

    I was taking about something to my brother CPN , how I can't understand where his coming from sometime

    he said to me , yes because you can't read him, so you get scared of that person, because you never know they next reaction.

    I thought to myself why would I want to read him ! what to understand where his coming from towards me ?

    I don't find that with my mother because I know the disease in the brain is taking her away , hard to explain in words but I understand what happening in her brain to make her the way she is now to how she was

    But my brother is another kettle of fish with his mental illness

    I did not have the courage to ask him (CPN )

    what the meaning behind that word " Read people " ?

    why would someone want to read someone who never had mental illness? is it to guess what they intention are toward that other person intuition , a perceptive insight ?

    I do hope you don't mind me asking
  15. Cliff

    Cliff Registered User

    Jun 29, 2007
    North Wales
    #15 Cliff, Jan 4, 2008
    Last edited: Jan 4, 2008
    Dear Margarita,

    I'll try to answer your dificult question.

    It is not really wanting to read someone, it is something that happens quite naturally. It is interpreting the body language of the other person; the posture, the way something is held, the mouth etc etc.

    We all do it whenever you approach someone, it's an inbuilt sense that makes you quickly assess the mood of the other person.

    Body language is a very interesting subject but in a relationship you can usually detect the other person's mood very quickly.

    Good to hear from you and everyone else,

    With love,
  16. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    You've got it exactly, Maggie. 'A perceptive insight' is spot on!

    We do it all the time when we're talking to people. As well as listening to the words, we're looking at the expression and the body language, and sometimes we can tell that what they are saying is the exact opposite of what they mean.

    Sometimes they are joking and saying everything's fine, and you can tell that underneath they are hurting badly, and could use some support.

    That's one of the problems with TP, and often why misunderstandings arise. We can only see the bare words, and sometimes we can't see what's behind those bare words.

    With mental illness and dementia it's a different problem. We know the person well, and thinke we can read them. But the 'person' is changing all the time, and our own perceptions have to be able to adapt quickly to the changes. And no-one can help with this, because the changes are different for everyone.

    With your mum, Maggie, you're living with her every day, and you're doing a brilliant job reading the changes.

    As you say, mental illness is a different kettle of fish, and dealing with the violent mood swings must be very hard.

    I'd have a word with his CPN, I'm sure she wouldn't mind helping you to understand.

  17. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Dear Cliff

    Our posts crossed -- I'm glad we agree!

    Good to see you back online, and hope you're feeling a bit better today.

  18. Cliff

    Cliff Registered User

    Jun 29, 2007
    North Wales
    Hello Hazel,

    Have been trying to find your thread about you and John.

    Will search again tomorrow

    Good to be back on TP

    Love to you both
  19. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
  20. Margarita

    Margarita Registered User

    Feb 17, 2006
    Thanks for clearing that up explaining it .

    My brother CPN always in a rush, they team says my brother an enigma , they can't given work him out.

    So at the end of the day my motto is '' If someone can't help themselves . they no helping them'' just support him when he has a relapse with the help of the mental heath team .

    Yes it is lovely seeing back on TP Cliff :)

    Wishing you all the best

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