1. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    I was looking to get some advice or general thoughts about our current situation with mum as a bit of a dispute has arisen about the best way to manage her.

    I reaslise this is along a similar thread as Davina's but I didn't want to hijack her post, plus at mum has FTD it does throw a slightly different light on things.

    Mum's speech is almost non exsistant now, although when she tries very hard she can get odd words out.

    My aunt (who is a psychologist) took mum out for the day on saturday to give dad a nice long break. She says that we should force mum to find the words and not answer for her or make decision for her. She seems to think she could try harder to communicate.

    My dad appears to have the opposite view and answers for mum a lot and makes almost all decision for her as his view is that her life is difficult enough - why make it worse by causing her anxiety by insisting she makes really rather inconsequental decisions.

    I really don't know - truthfully most of the time I do it dad's way as it's quicker and seems easier for all concerned.

    Any thoughts?
     
  2. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #2 Margarita, Feb 11, 2008
    Last edited: Feb 11, 2008
    If your mother at the stage she can't make a decision why add more stress on her ?

    its going to affect her self esteem make her feel worse.

    It seem that your main issue is with your mother talking communicating with you all ?

    When My mother got to the stage that she was finding it hard to make a decision in what clothes to wear .

    I gave her 2 choices of clothes . ask her which on she like to wear.

    What kind of decision do you want her to make ?


    I don't get the theory that making someone with any type of dementia,
    make a decision will help them talk more .
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,584
    Kent
    Hello Kate.

    What causes your mother the least stress, your aunt forcing your mother to find the words, or your father helping her along.
    I`d do what makes it easier for your mother.

    I know it isn`t reccommended to `speak` for those who stammer, we should wait patiently for them to say what they mean, but dementia is a very different condition.

    I would do it your father`s way, after all he`s the one who lives with your mother and knows her best.
     
  4. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    I must admit it was my thoughts really. My aunt said mum talked more because she made her but is it worth the anxiety of mum having to remember the word for "tea" rather than just ordering it for her because it's what she likes?

    I don't think it will help to slow down the rate of her dementia - I don't think it's like getting a child to talk - the more they do it the better they get.

    It makes me wonder about these brain training games - everyone I know has one at the moment but mum had a very responsible job where she was using her brain all the time and it hasn't helped her as far as we can see.

    Do you think these things genuinely help or is it a bit of a gimmick?
     
  5. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #5 Margarita, Feb 11, 2008
    Last edited: Feb 11, 2008

    I don't believe it can stop anyone getting a dementia.


    but I do feel it can simulate your mind to keep you motivated .

    I am home all the time with mum and can became very demotivating, so I find games like that simulate my mind , I use game like that on the internet , would not go out an buy one . I rather buy read a book .

    The brain has no muscles like the body . like going to the gym to tone those muscles in the body , you can't tone any muscles in the brain , because the brain has no muscles .

    but you can simulate your mind , with reading playing those games.
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,584
    Kent
    I think they have yet to be proved.

    When I was at school, we had the 11+. Every Friday afternoon, in year 6, we practiced with old papers. I passed the 11+.

    When my son was at school, the 11+ had ended in Manchester and Comprehensive education had been introduced.

    We planned to move house to live nearer my mother, and were moving to Bury, an area which still had Grammar Schools. We arranged for our son to sit the 11+ exam and he failed.

    He has a PHd in Pharmacology.

    There is no way I would ever have been clever enough to get a PHd, but I passed my 11+ and my son failed. What I am trying to say is I was `trained` to pass an 11+, whilst my son wasn`t.

    I think these brain training games can train you to perform certain operations, as chimpanzees can be trained to perform certain operations, and many others in the animal Kingdom. But that`s as much as they can do.

    I don`t think AD can be prevented, we have seen some very clever people succomb to it. All we can do is make sure we have as many interests as possible, try to stay healthy, and keep our fingers crossed.

    Just my opinion, of course. :)
     
  7. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    3,388
    Buckinghamshire
    Dear Kate,
    Having gone through the stage with Peter and loosing his speech, I in my humble opinion would support your Dad.
    Talking to the Professionals (and they are not living 24/7) with this illness are amazed just what a Carer can do and just how must is understood by a Carer.
    When Peter does a mumble jumble rather than see the frustration in his face, just by acknowledgement and answering i..e. a cup of tea would be a good idea and he is quite happy.
    With best wishes
    Christine
     
  8. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Oo two points I feel quite strongly about!

    1) On the whole I think your father is quite right. Does your aunt have any experience professionally with progressive dementias? It doesn't sound like it. If it was stroke damage she might have a point - other parts of the brain can be trained to take over from the damaged parts but that's not what's happening here. I would definitely come down on it like a ton of bricks if it distresses your mother. However, I think you have to accept you will probably never persuade your aunt that she is wrong, since this comes down to professional pride.

    2) brain training games - gimmick. Not withstanding Sylvia's point about "training" to pass exams which is a fairly common thing since 1) each exam has a language all it's own and 2) questions tend to be repeated (in a broad sense), training your brain in the hope that it will in some way stave off dementia is futile. This is not to say that a diet of pap TV is good for you because I don't think it is but if it was possible to avoid the dementias the intellectual classes would have no members reporting dementia and we know that's not the case.
     
  9. sue38

    sue38 Registered User

    Mar 6, 2007
    10,856
    Wigan, Lancs
    This is something we wonder about too. My Dad's speech, finding the right word and so on, has been deteriorating for years, long before we suspected anything serious. We got to a stage where we supplied the word, name, place etc. without thinking. Sometimes I wonder should we have done this? Has this allowed my Dad to become 'lazy' in his speech?

    Also my Mum makes all the decisions for him and now he finds it difficult to make a decision without her. Again we wonder if this help actually hinders.

    On the question of brain-training games my Dad carried on working as a solicitor until around 70 and after he retired took Spanish GCSE. Didn't do him much good...
     
  10. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,584
    Kent
    Sue,

    My mother was a very sharp business woman, and the `doer` in the family. She managed all the accounts, was complimented by the VAT Inspector, of all people, on the state of her accounts, and my father sat back whilst she did everything.

    She started with `memory problems` in her late 60`s, and died aged 83 with full blown dementia.

    I doubt your father would be able to make any decisions now. I suspect your mother is helping him, not making him lazy.

    I ask Dhiren`s opinion and he replies with `What do you think?` or `What do you want?` He will not even tell me what he wants to eat.
     
  11. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Sylvia you mother sounds like my mother `doer` very sharp .


    6 years together
    she remember what food she still like.

    could be because of the medication she taking .

    Me giving her the same few choices

    when I go to the shops she say " what you going to get me "

    even if I am just going for Milk .

    she ask for one of theirs.
    yogurt, fruit , orange juice , sometime salami

    she try tell me what she like to eat , but can't find the word, she say "you remember " and I roll out what she likes , till I got it right then she say "yes thats it ".
     
  12. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #12 Margarita, Feb 11, 2008
    Last edited: Feb 11, 2008
    Sylvia you mother sounds like my mother `doer` very sharp .


    6 years together
    she remember what food she still like.

    could be because of the medication she taking .

    Me giving her the same few choices

    when I go to the shops she say " what you going to get me "

    even if I am just going for Milk .

    she ask for one of theirs.
    yogurt, fruit , orange juice , sometime salami

    she try tell me what she like to eat , but can't find the word, she say "you remember " and I roll out what she likes , till I got it right then she say "yes thats it ". that only in the last year other wise before then, she get angery with herself for forgetting saying she so stupid


    Only now this year , is she slowing down on her talking, also getting mix up with her word . Day center is now Play Center
     
  13. sue38

    sue38 Registered User

    Mar 6, 2007
    10,856
    Wigan, Lancs
    #13 sue38, Feb 11, 2008
    Last edited: Feb 11, 2008
    No, I am not criticising my mum, but just wondering if all the help we give to him has contributed to him losing his independence and his ability to make a decision. I was as 'guilty' as anyone of filling in the blanks when he couldn't find the words.

    I think it's normal with any illness to wonder whether if we had done so-and-so would things have been different? No criticism intended just musing...

    But don't misunderstand me, my Mum is a boss, in the nicest possible way. She still tries to boss me around with varying degrees of success. ;)
     
  14. sue38

    sue38 Registered User

    Mar 6, 2007
    10,856
    Wigan, Lancs
    Kate,

    I have found this quite helpful, think I read it on here and saved it. Not sure if it helps in your Mum's situation.

    Compassionate Communication with the Memory Impaired

    by Liz Ayres
    A Volunteer of the Alzheimer's Association and Former Caregiver

    DON'T
    Don’t reason.
    Don’t argue.
    Don’t confront.
    Don’t remind them they forget.
    Don’t question recent memory.
    Don’t take it personally.



    DO
    Give short, one sentence explanations.
    Allow plenty of time for comprehension, then triple it.
    Repeat instructions or sentences exactly the same way.
    Eliminate 'but' from your vocabulary; substitute 'nevertheless.'
    Avoid insistence. Try again later
    Agree with them or distract them to a different subject or activity
    Accept blame when something’s wrong (even if it’s fantasy).
    Leave the room, if necessary, to avoid confrontations.
    Respond to feelings rather than words
    Be patient and cheerful and reassuring. Do go with the flow.
    Practice 100% forgiveness. Memory loss progresses daily.
    My appeal to you: Please.elevate your level of generosity and graciousness.



    Remember

    You can’t control memory loss, only your reaction to it. Compassionate communication will significantly heighten quality of life.

    They are not crazy or lazy. They say normal things, and do normal things, for a memory impaired, dementia individual. If they were deliberately trying to exasperate you, they would have a different diagnosis. Forgive them ... always. For example: they don’t hide things; they protect them in safe places... And then forget. Don’t take ‘stealing’ accusations personally.

    Their disability is memory loss. Asking them to remember is like asking a blind person to read. (“Did you take your pills?” “What did you do today?”) Don’t ask and don’t test memory! A loss of this magnitude reduces the capacity to reason. Expecting them to be reasonable or to accept your conclusion is unrealistic. (“You need a shower.” “Day care will be fun.” “You can’t live alone.”) Don’t try to reason or convince them. Give a one sentence explanation or search for creative solutions. Memory loss produces unpredictable emotions, thought, and behavior, which you can alleviate by resolving all issues peacefully. Don’t argue, correct, contradict, confront, blame, or insist.

    Reminders are rarely kind. They tell the patient how disabled they are – over and over again. Reminders of the recent past imply, “I remember, I’m okay; you don’t, you’re not. ”Ouch! Refer to the present or the future. (If they’re hungry, don’t inform them they ate an hour ago, offer a snack or set a time to eat soon.) They may ask the same question repeatedly, believing each time is the first. Graciously respond as if it’s the first time. Some days may seem normal, but they are not. They live in a different reality. Reminders won’t bring them into yours. Note: For vascular dementia, giving clues may help their recall. If it doesn’t work, be kind ... don’t remind.

    Ethical dilemmas may occur. If, for instance, the patient thinks a dead spouse is alive, and truthful reminders will create sadness, what should you do? To avoid distress, try these ways of kindness: 1) distract to another topic, or 2) start a fun activity, or 3) reminisce about their spouse, “I was just thinking about ______. How did you two meet?” You might even try, “He’s gone for a while. Let’s take our walk now.”

    Open-ended questions (“Where shall we go?” “What do you want to eat/wear/do?”) are surprisingly complex and create anxiety. Give them a simple choice between two items or direct their choice, “You look great in the red blouse.”

    They are scared all the time. Each patient reacts differently to fear. They may become passive, uncooperative, hostile, angry, agitated, verbally abusive, or physically combative. They may even do them all at different times, or alternate between them. Anxiety may compel them to shadow you (follow everywhere). Anxiety compels them to resist changes in routine, even pleasant ones. Your goal is to reduce anxiety whenever possible. Also, they can’t remember your reassurances. Keep saying them.

    Examples

    Don’t reason

    Patient What doctor’s appointment? There’s nothing wrong with me.”
    Don’t (reason) “You’ve been seeing the doctor every three months for the last two years. It’s written on the calendar and I told you about it yesterday and this morning.”
    DO (short explanation) “It’s just a regular check-up.”
    (accept blame) “I’m sorry if I forgot to tell you.”

    Don’t argue

    Patient “I didn’t write this check for $500. Someone at the bank is forging my signature.”
    Don’t (argue) “What? Don’t be silly! The bank wouldn’t be forging your signature.”
    DO (respond to feelings) “That’s a scary thought.”
    (reassure) “I’ll make sure they don’t do that.”
    (distract) “Would you help me fold the towels?”

    Don’t confront
    Patient “Nobody’s going to make decisions for me. You can go now ... and don’t come back!”
    Don’t (confront) I’m not going anywhere and you can’t remember enough to make your own decisions.”
    DO (accept blame or respond to feelings) “I’m sorry this is a tough time.”
    (reassure) “I love you and we’re going to get through this together.”
    (distract) “You know what? Don has a new job. He’s really excited about it.


    Don’t remind them they forget
    Patient: “Joe hasn’t called for a long time. I hope he’s okay.”
    Don’t (remind) “Joe called yesterday and you talked to him for 15 minutes.”
    DO (reassure) “You really like talking to Joe, don’t you?”
    (distract) “Let’s call him when we get back from our walk.”



    Don’t question recent memory

    Patient “Hello, Mary. I see you’ve brought a friend with you.”
    Don’t (question memory) “Hi, Mom. You remember Eric, don’t you? What did you do today?”
    DO (short explanation) “Hi, Mom. You look wonderful! This is Eric. We work together.”



    Don’t take it personally!

    Patient “Who are you? Where’s my husband?”
    Don’t (take it personally) “What do you mean – who’s your husband? I am!”
    DO (go with the flow, reassure) “He’ll be here for dinner.”
    (distract) “How about some milk and cookies?” .. Would you like chocolate chip or oatmeal?



    Do repeat exactly

    Patient "I'm going to the store for a newspaper."
    Don’t (repeat differently) "Please put you shoes on."
    "You'll need to put your shoes on."
    DO (repeat exactly) "Please put your shoes on."
    "Please put your shoes on."



    Do eliminate "but", substitute "nevertheless"
    Patient "I'm not eating this. I hate chicken."
    Don’t (say "but") "I know chicken's not your favorite food, but it's what we're having for dinner."
    DO (say "nevertheless") "I know chicken's not your favorite food, (smile) nevertheless I'd appreciate it if you'd eat a little bit."

    Used with permission from Ellen Warner at Ageless Design
     
  15. Zadok

    Zadok Registered User

    Mar 15, 2006
    68
    Kent
    helpful

    I too remember reading this before. If only I could remember to refer to it often and use the good advice!
    Thanks for copying it.
     
  16. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Oh Sue I remember posting that post in 06 , as I found it so helpful , so wanted to share it on TP , but had to ask Ellen Warner permission to cope it onto TP , because of cope rights on TP .

    Thanks for the reminder.
     
  17. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    Thanks for that advice Sue. I'm not sure how well distraction will work with mum as memory (although affected) isn't the main issue with her.

    I've tried to distract her when she's been in a rage by taking her for a walk to give her and dad to calm down but she starts again as soon as she's in the door.

    She bought my daughter four pairs of slippers for Christmas because she couldn't remember that she'd already bought them but if dad's done something she doesn't like she can carry on for hours about it.

    Then all of a sudden she'll stop - it's the strangest thing - we have no idea what suddenly makes her stop but there it is...

    However, the advice is till sound and I'll certianly print it off to show dad because he does spend massive amounts of time and energy trying to reason with her.
     
  18. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,584
    Kent
    Kate, to a far lesser degree this happens with Dhiren. He becomes agitated and very confused for an indefinite period of time, and then it stops.

    He knows it himself, and will say `I`m all right now.`

    I call it a `lapse`, and there could be 101 explanations for the cause, but it is comforting to know it will go.

    Your mother`s `lapses` are far more distressing and I really do sympathize with your father.
     
  19. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    It's so strange isn't it? I sometimes think it would be easier to manage if we at least knew what she was thinking - but because she can't talk we just have no clue at all. No matter how irrational it was I think we'd stand a better chance of calming her down... but then who can say? Can't live on "maybe".

    I do feel for my dad. I don't know how he manages sometimes. When she has an episode it's just horrendous - the screaming at full volume and the hysterical crying for hours on end and then all of a sudden it's gone and it's like she doesn't even remember it's happened - better for her I guess but much worse for poor dad who's left an emotional wreck. If only the carers could shut the emotions of as easily eh?

    Dad's fighting against it all so hard and I think that makes it worse for him too although I can understand why he does.

    For me I've reached an acceptance that this isn't my mother - there isn't one spark of the women she used to be at all. For me it's as though my mum has died and we're looking after a new person "B". I know dad hates it that we feel that way but I can't relate to her as my mum at all - it was tarnishing the memories of who she really was and I hated that. Plus I an manage her outbursts and unpleasant behaviour much better as I don't feel it as personally.

    I think easier said than done when you're one step removed but dad can't do that or else how could he keep caring for her each day? I think he's got to still see her as his wife because otherwise what would be the point?

    I'm not sure I'm making much sense and it probably seems a bit cold and distant. I don't mean it to be - I miss my mum, especially just now...
     
  20. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Kate - no it doesn't seem cold and distant, and it makes perfect sense. Having walked this road I can relate to the feeling that your mother has gone. All I can say is it helps to get you through these difficult days, and eventually when this disease has come to its natural conclusion, you'll get your mother back, in your memory at any rate.

    Love
     

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