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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. lesmisralbles

    lesmisralbles Account Closed

    Nov 23, 2007
    Dear Silvia

    Tonight - Ron
    My eyes are sore
    Ron you must stop rubbing them
    Its the dust
    What dust
    From under the floor boards
    We have solid floors Ron
    When I was under the floor boards - the bed last night
    I was hiding from that women
    Me, thinks,this must be the one in the wardrobe ? he saw yesterday.
    So many other things, so many:(
    Thinking of you both
    Barb X & RonX
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    yes, this happened with Jan and my only solution was never to put the TV on. She simply couldn't realise it was on a screen, not in the lounge.
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Oh dear!

    Last night Dhiren went to bed before me. Half an hour later he was wandering the house dressed only in a sweater and vest. He was very upset;
    D `I can`t find any of my clothes.`
    I guided him back to the bedroom and his pyjamas were under the pillow where they always are.
    D `I can`t remember anything.`

    On Tuesday the consultant is paying a home visit. The CPN arranged it as he feels Dhiren needs another review. He understands the consultant who made the last home visit may have been falsely impressed by Dhiren`s bouyancy particularly since the upset when he spent the night at Paul`s.

    But even last night Dhiren kept repeating, `I`m fine. There`s nothing wrong with me. I`m fine.`
  4. Lynne

    Lynne Registered User

    Jun 3, 2005
    Dear Sylvia, you must be both dreading Tuesday's visit AND wishing it could happen sooner, before "I'm fine" becomes the norm again.

    Is the CPN attending with the consultant, or is it felt it would cause D's resentment to extend to him too, to the detriment of your lifeline?

    Attached Files:

  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hello Lynne

    The consultant will attend on his own.

    It is the morning of my Memory Clinic Relative`s Support Group. I should be back in good time but if the consultant happens to be early or I happen to be late, Dhiren will be the one to open the door to him.

    The CPN has agreed with me, we should let it happen.

    Thanks Lynne xx

    Is the little duck crying?
  6. Lynne

    Lynne Registered User

    Jun 3, 2005
    With sympathy/empathy for you both.
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Can language be lost so quickly?

    The magazines Dhiren has been reading are getting increasingly difficult for him to read, seemingly hour by hour.

    Can comprehension go so quickly?

    He is now asking me to read it for him and tell him what it means. Sadly the print is too small for me, especially in electric light, but he thinks I`m not trying and he`s becoming impatient.

    He is reading about the Indian Moon Mission, a subject far from close to my heart. He doesn`t understand what he is reading and tells me he is frightened of missing something.

    I have told him I`ll try to read it for him tomorrow in daylight but know whatever I`ll read will have to be repeated and repeated and repeated.

    This is an area of caring I feel will be the biggest challenge so far.
  8. Helen33

    Helen33 Registered User

    Jul 20, 2008
    Dear Sylvia

    Just on a practical note, could you scan a portion of the magazine and then you can magnify it before printing it off!!

    With regard to the pace of loss, I suspect it would be a completely individual thing. Do you think it is a loss of comprehension or could it be spatial awareness which makes it difficult for Dhiren to focus on word by word, line by line??

  9. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Sylvia, as you know, John's ability to read went quite early, but it was quite a gradual process.

    Sadly, it was associated with loss of language. Nouns went first, for a long time they were the main problem, and we had constant 20 questions to discover what he was trying to say. Then gradually all speech and comprehension went. Not because he couldn't hear or speak, but because words lost all significance for him.

    I hope it doesn't happen like that for you and Dhiren, the sense of isolation is dreadful.

    Sorry if this is depressing for you. It's dreadful that this disease is throwing up yet another problem for you.

  10. Margarita

    Margarita Registered User

    Feb 17, 2006
    #3650 Margarita, Nov 5, 2008
    Last edited: Nov 5, 2008

    Wondering if it could be down to d diabetic in how it affects the eyes,
    As my mother can still read very large print, but not the print in newspapers so is always asking me to read her horoscope from the newspapers or in magazine. Tina wrote in Spanish to mum in a PM I put it in Microsoft word and enlarge it to massive writing mum read it out to me correctly .

    As in the past mum could read English and Spanish. Now mum comprehension of Spanish and English is fluttering away, but we muddle though it somehow.

    But yes comprehending reading it in English and Spanish was very hard for mum to do , even when I read it out to my mother in magazine & newspapers, so I have to Interpret it in a simpler way she can comprehended it
  11. connie

    connie Registered User

    Mar 7, 2004
    Hi Sylvia, is there any element of vascular dementia in Dhiren's diagnosis?

    VD, with its steps and stairs progression was explained to me once by Lionels consultant as;
    The drop, followed by a levelling out process. At this time, if you think of a tree or bush that needs pruning and what happens afterwards, new nerve endings start to regenerate........thus the levelling process.

    If the trauma has been too severe causing the drop, the new nerve ending don't regenerate quite so good, thus any ability can quickly go.

    Not necessarily for good.........but certainly with a marked decline.

    I am only a layman, but I hope my explanation helps.
    (It is even better with diagrams:))

    Ignore my post if it is not helpful.............we all look for explanations though. Sending love n'hugs.
  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Thank you.

    Dear Helen,
    I hadn`t connected Dhiren`s difficulty with his loss of spatial awareness. That might be a cause.
    Now I come to think of it, he has had some problems going to the correct following paragraph, especially if there`s a picture in the middle of the page
    I haven`t a scanner.

    Dear Hazel,
    Dhiren seems to be having more problems understanding what he is reading. So far he has had few word finding difficulties.

    Dear Margarita,
    Even with cataracts, Dhiren`s eyes are better than mine and he still reads in the evening by electric light. Something I find very difficult.

    Dear Connie,
    The consultant said there could be vascular problems caused by Dhiren`s diabetes so you may be right too.

    I shall just have to wait and see.
  13. janjan

    janjan Registered User

    Jan 27, 2006
    Hi Sylvia, just popped in. not sure how fast comprehension can go , but i remember when i discovered dad couldn't tell the time, and how he tried to pretend he knew. [Hugs to you both.] x
  14. millymollymandy

    millymollymandy Registered User

    Nov 6, 2008
    North Wales
    I have just registered as a new member, but Grannie G i have been reading your thread for ages. sometimes its so sad but always lyrical and thoughtful. I think everyone working with people with dementia should read your thoughts, what better way to understand what living with dementia is really like.

  15. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Thank you millymollymandy :) Welcome to Talking Point.
  16. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    What a morning!!!

    This morning Dhiren continued obsessing about India`s Moon Mission.

    S `Let me try to read it for you now it`s daylight.`
    D `I don`t need you to read it. I can read it myself.`
    S `Oh good. I thought you needed help.`
    D `I need help to go. I must go to India to see the moon mission, but I don`t know he phone number. Will you phone for me.`
    S `Who do you want me to phone?`
    D `The space mission. I need to know it`s true. I can`t believe it.`
    S `It must be true. It`s written in the magazine and I`ve printed articles for you from the Times of India.`
    D `But I have to see it for myself. I must go. I want you to take £500 out of the bank for me. You can have half and I`ll have the rest. I`ll go to see if it`s true and then come back.`
    S `All right.`
    D `When will you get the money?`
    S `I will have to give one week`s notice.`
    D `Have you got a plastic bag for my clothes.`
    S `I`ll get a suitcase out when you`re ready to go.`

    He started to get shirts out of the wardrobe and I managed to persuade him to let me put them back until he was ready to go.

    At this stage I was beginning to panic. What I have related above is a shortened version of what was said. I nearly phoned Terry, I was out of my depth.

    To distract him I suggested we go out for lunch, which we did. Five minutes out of the house he decided he might be going on a wild goose chase, he might not find his family and if he did they might not know him. He did not want to make a fool of himself, he might not be able to find the moon mission and he would have gone for nothing.
    He would have wasted our money.
    All the time while we were out he was talking himself out of going. I encouraged him by saying I didn`t want him to go, I would miss him, I would worry about him. And he was saying he`s too old to travel so far by himself, he would miss Paul and the children, he had a family here.

    On the bus on the way home he said, `You gave me a shock when you told me to go to the moon by myself. How could you.`
  17. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Oh Sylvia, it would be funny if it wasn't so sad!

    Dhiren has a fixation about this moon mission, and I guess he's going to want to go for as long as it's in the news.

    Oh dear!:(

    (Did he manage to read the paper?)

  18. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hello Hazel

    He can read it Hazel but neither believes it or understands it. Perhaps he can`t believe it because he doesn`t understand it or even vice versa.

    As soon as I can hide the magazine I will do so. I tried this morning but he was looking for it.

    And yes the punch line is funny, and by the time it came I was ready to appreciate it.
  19. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    It seems Dhiren has a new obsession. At least this might be easier to handle than his going to the train station all the time & buying train tickets over & over again. Then again, I'm sure the sheer repetition is exactly the same as the train ticket obsession.

    I did smile when I read that.
  20. Helen33

    Helen33 Registered User

    Jul 20, 2008
    Dear Sylvia

    It makes me think that Dhiren fixates on a subject (whatever that might be) and then finds himself stuck in a kind of duality (I need help, I don't need help; I'm going to India, I'm not going to India; you want me, you don't want me) - wherever he is, he is faced with dementia - it's just the subject that changes.

    Thinking of you Sylvia and sending a big hug.

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