1. miggy

    miggy Registered User

    Apr 8, 2008
    2
    South Carolina
    This is my first time on Talking Point so please bear with me if I am doing it wrong-My 86 year old father has vascular dementia and lives alone. He has been diagnosed by a physician and just recently started getting outside assistance for some areas of care but his main care giver is myself. I only have one brother and he lives out of state. We talk often and I get moral support but he only comes to visit or help twice a year. My major complaint is that I constantly stay frustrated because of dad's lack of comprehension and understanding. He cannot speak sentences because the words just don't come to him and it is sometimes like playing a game of charades trying to figure out what he is trying to tell me. He also gets one subject in his head and constantly ask me the same thing over and over for days on end. Do any of you have advice on how to control my frustration?
     
  2. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    Hello Miggy:
    Welcome to TP - I am sure you will get much helpful advice from TP.

    Not sure that I can help as it is a hard path to follow.

    You sound to be doing your best, but in the end you need to pray for patience, tolerance and strength.
    I hope your father gets local support and help for him. Please keep posting.
    Love Jan
     
  3. mollieblue

    mollieblue Registered User

    May 16, 2007
    37
    belfast
    Hi Miggy,
    I too have no great answer for you here! tolerance and patience are the problems we all search for! I can't count the times I've lost my temper and had arguements when I should have held my tongue! I can tell you this, as time goes on, things that used to annoy u start to be easier to handle.walking away for a bit helps me. going into the kitchen or the garden for a bit to calm down helped too! Always remember that your dad's behaviour is not done on purpose. easier said than done I know!
    Using this site is also a great method of coping - vent all your wrath here - we all undertand!!
    ann x:)
     
  4. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Miggy, welcome to TP.

    I know all about that frustration, my husband has PPA, and for years converstion has been increasingly limited. Now he has no language at all.

    I don't know about patience, I'm not the most patient person in the world. All I can say is that the more time you spend with them, the more you learn to interpret their facial expressions and body language.

    It's not easy, but nothing about this disease is.

    Stick with us, there's lots of support on this forum.

    Best wishes,
     
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,647
    Kent
    Hello Miggy,
    The only way out for me, is to try to imagine how frustrated I would be, if I were in the position of someone who was unable to make themselves understood.
     
  6. ishard

    ishard Registered User

    Jul 10, 2007
    98
    You probably need time out away from your father. Some 'you time'. Perhaps your brother could take over the caring whilst you have a break?
     
  7. andrear

    andrear Registered User

    Feb 13, 2008
    402
    Yorkshire
    HI therer

    I agree, some 'you time' is definately the order of the day, as I have finally learnt myself!!! For me a lovely soak in the bath with candles does wonders for my mind as I can finally switch off for a short while. I couldn't have done that last month without feeling guilty, but with help and guidance from people who I talk to i amd finally having a bit of 'me time' even if its just walking into the garden for a few minmutes.
    Andrea
     
  8. sue38

    sue38 Registered User

    Mar 6, 2007
    10,856
    Wigan, Lancs
    Hi Miggy,

    I have posted this before (it was originally posted by Margarita) but I found (and still find) it helpful

    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
     
  9. SueG

    SueG Registered User

    Jan 21, 2008
    9
    Port Talbot
    Hi Sue!
    What a fantastic piece of advice!Even after 2 years at this I'm still mishandling a lot of things but this will really help.
    Thanks again
    Sue G
     
  10. desperado

    desperado Registered User

    Apr 7, 2008
    42
    Lancashire England
    Hi Sue
    Thank you for that enlightening quote. I have printed it off as I think I will need to refer to it many times as so many of the things mentioned I get wrong. I'll keep practising.

    There really is so much help and good advice at TP. It is helping me every day.

    Thanks to everyone
     

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