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A life in the day of.........................

Discussion in 'I have a partner with dementia' started by Grannie G, Jun 4, 2007.

  1. andrear

    andrear Registered User

    Feb 13, 2008
    402
    Yorkshire
    (During our chat, we discussed the TP Forum. I asked Dhiren what he thought it was for. He told me he thought it was to help me learn about Alzheimers so I could help him. He thought I was also helping others. I asked how he felt knowing I discussed him with others. He had no problem with it as he felt it was the only way for me to learn. His actual words were `you learn from others, others learn from you.`)

    HI Sylvia
    Dhiren is so right, you are on the site wanting to learn more about Alzheimers and helping him in any way you can to get through this nightmare.
    And he is so right that you do help others learn. Without the help from you and quite a few other people on this fantastic site I really don't know where I would be. Its a bit of a lifeline for me.
    Dhiren is very astute. And you with your wisdom, what a fantastic team you make!!
    Love AndreaX
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    I totally agree!

    When there is such closeness, I guess it is little wonder that some who have not experienced that quality cannot understand how it is - is, not was, of course.
     
  3. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    I agree too!

    Those of us who are full-time carers (and I still include myself in that) have the welfare of the person we care for as our prime concern. We need support and information, and we want to support others. We are caring for a person with dementia; this is a dementia forum; what else would we write about?

    We write about what has happened, what is worrying us, what has happened to make life easier -- and sometimes the funny things that can happen in the course of living with dementia.

    Sometimes we have a moan, but that's usually in the spirit of 'What can I do about this?' On the very rare occasions when someone has said something nasty about the person they care for, the disapproval of the other members is palpable.

    We care with love, and we write with love. That's why we are here.

    With love to all,
     
  4. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Its great to read that Dhiren still has that awarenesses clarity of thought of knowing what your doing on the Internet.
     
  5. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    541
    Good Evening Sylvia

    Thank goodness for these times:) I am so pleased for you both. Alan and I listened to music all afternoon in the sun room which was a good way for him to relax because he's tired after all the excitement of the long weekend.

    I don't think Alan can get his head around this computer thing:(
    Still he benefits from it in a roundabout way.

    Love Helen
     
  6. Cliff

    Cliff Registered User

    Jun 29, 2007
    777
    North Wales

    Oh Sylvia,

    This quote is marvellous - am so pleased you have had that morning. And the following conversations are so alive with feelings.

    Sure you will treasure this,

    Love,
     
  7. Chrissyan

    Chrissyan Registered User

    Aug 9, 2007
    570
    N E England
    Wow, Dirhan obviously has a good deal of clarity & reasoning in there somewhere. What a great thing to say. :)
     
  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    70,096
    Kent
    Thank you

    The difference in the Dhiren who is calm and peaceful, with a clear head, and under no pressure, and the Dhiren who is tired, or has episodes of confusion from a `foggy` head, is tremendous.

    During the evenings when he starts to feel tired, his face takes on a strained , almost tortured appearance. I think he is no longer able to follow many television programmes, especially drama, even soaps.

    When I asked last night if he was all right, he said `I`m concentrating.`
     
  9. lesmisralbles

    lesmisralbles Account Closed

    Nov 23, 2007
    5,543
    Hello

    Quote : During the evenings when he starts to feel tired, his face takes on a strained , almost tortured appearance. I think he is no longer able to follow many television programmes, especially drama, even soaps.

    When I asked last night if he was all right, he said `I`m concentrating End Quote:


    And Ron willl say to me, I am thinking:(
    I wish he was:) He just goes blank.

    Barb & Ron XX
     
  10. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    1,669
    NZ
    Hi Sylvia

    I am glad that Dhiren and you are a bit more settled at the moment.

    Mum could be like this too as she got tired, yet curiously some of my most lucid conversations with her also took place in the evening. If she had been tired and given a shower and put to bed she was often relaxed. She did not have to concentrate on anything apart from chatting, she was comfortable and we could often chat, yet if she was sitting in a chair...it seemed to require more effort.

    When going out, eventhough she could walk, if we took a wheelchair, she enjoyed it more as she could concentrate on her surroundings, rather than walking and got much less confused also.

    It is such a strange illness that restricts in so many ways.

    Love to you and Dhiren

    Mameeskye
     
  11. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london

    I find that we my mother also, with my mother when she in one place all the time as in respite , compared to all the traveling going backwards towards to day centers when at home with me . She has more clarity of thought .

    Mum was amazingly alert in the mind yesterday remembering so many things, but I know in a few days time or so time she get very tired, stress out & her thought will became very confused unorganized . Main thing for me I suppose is just to recognize what happens , so can cope better in the future.
     
  12. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland

    Hi Mameeskye

    I'm guessing here, but from my observations of John, I think it's to do with the loss of balance.

    I sit him up in his reclining chair to feed him, but immediately afterwards he's pushing back with his head, to tell me to recline him.

    Before he got his recliner, it was hopeless, he just couldn't sit upright, and that's how he got the sores on his heels, by rubbing them on the floor to try to get horizontal.

    It makes sense, I know for the last few days when I've been feeling so ill I've felt dizzy and just wanted to lie down for much of the time.

    No-one wants to keep people in bed, but I think there should be greater use of recliners for late stage dementa patients. I feel quite guilty sometimes seeing other residents slumped down in their ordinary chairs, or bent double in their attempts to get their heads down.

    I'm not suggesting that Dhiren is at this stage, Sylvia, but it's something you might consider for the future.

    Love,
     
  13. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    70,096
    Kent
    Thank you,Barb, Mameeskye, Maggie and Hazel.

    No Dhiren is not at this stage. He just gets very tired very quickly.

    This morning we both slept till 9.45am. I woke still groggy but Dhiren said he hadn`t felt so fresh for ages.

    We said we would go for the papers together.

    But by the time he had shaved, washed and dressed himself, he was too tired to come with me, so once again I went alone.
     
  14. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    70,096
    Kent
    We saw the consultant today. He was very pleased with how Dhiren looked. He said he was much more smiley than he used to be.

    We agreed his spell in hospital, traumatic though it was, had been beneficial.

    He did the MMSE test.

    In January he scored 20
    In May, prior to admission, he scored 13.
    Today he scored 17.

    And I realized the test does have a purpose. The purpose is to compare Dhiren with Dhiren. It is not to compare Dhiren with any other patient with dementia.

    So in January he was OK.
    In May he was very confused and disturbed.
    Today, although his Alzheimers has deteriorated, he has pulled back from the lowest score because he is better in himself.

    When asked to write a sentence in previous MMSE tests, Dhiren had written `I want to go home.`
    Today he wrote `I am getting better.`
     
  15. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Attaboy Dhiren!

    :) Positive Mental Attitude!
     
  16. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Well done to Dhiren for his written comment.

    Lionel wrote once "I AM NOT GA- GA YET"

    Sylvia, think your theory on the reasoning behind the tests could well be right.
     
  17. lesmisralbles

    lesmisralbles Account Closed

    Nov 23, 2007
    5,543
    Hi Silvia

    The test.
    Compare Ron with Ron:)
    Well, it depend's on the day Ron is having.
    Today he might do a crossword, tomorrow ???

    The last test Ron had, he improved:)
    The next in August, who know's ?

    Today we could not do a lot, Ron wanted to sleep.
    Tomorrow ??

    What do we do?
    Keep living in hope.
    Or live with reality.

    Love Barb XX & Ron ZZZ
    PS I am a Lesmisarable Old Cow. NOT:D
     
  18. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    70,096
    Kent
    Sundowning

    The positive mental attitude lasted until 11.30pm. when sundowning came with a vengeance.
    It lasted until nearly 2am.
    I slept for a while.
    And now I`m awake.
     
  19. Chrissyan

    Chrissyan Registered User

    Aug 9, 2007
    570
    N E England
    Oh dear, I hope you have been able to go back to bed & are not too stressed to sleep.:(
     
  20. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Well done Dhiren!:)

    I know you've had a rough night, and you must be exhausted, but he is better, isn't he? His mmse score shows it, and you know he's calmer than he was. I like the 'more smiley'!:)

    It's a roller-coaster ride for us carers; first the good news, then the bad -- in the space of a few hours.

    Hang in there, Sylvia, you're doing a great job.

    Love,
     
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