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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. janjan

    janjan Registered User

    Jan 27, 2006
    229
    Birmingham
    Hi Sylvia, having a son who was diagnosed last year type 1,who is only really just coming to terms with diabetes, its been a learning curb for all of us to understand the adjustments he has made to his lifestyle. The out look he now on his future has changed to what it was a year ago. He said to me a while ago, he feels like he has been given a second chance, and has made him rethink about how precious life is. Then when he thinks how he is doing quite well managing it he goes to the hospital and they tell him otherwise. Then he gets all rebellious and depressed. Somtimes i find it so hard to be able to understand what he is going through. Sending you both [HUGS]. Jan.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    70,084
    Kent
    Thankyou Jan.

    Diabetes takes over your life and is a very serious condition. Now Dhiren has such severe memory loss he forgets what he has eaten and forgets what he should and should not eat.

    It`s strange really because he has watched his weight all his life and understands fattening and unhealthy food, but no longer understands the foods dangerous to diabetes.

    We kept non dairy ice cream in for our grandson who used to have allergic reactions to milk. Dhiren thought it was OK to have that ice cream.

    I hope your son learns to live with his condition. It is such a niusance, especially affecting social eating.

    Love xx
     
  3. Cliff

    Cliff Registered User

    Jun 29, 2007
    777
    North Wales
    Dear Sylvia,

    Thanks, no - Dee is not eating and getting v weak.

    Do hope today hasn't been so turbulent.

    Love,
     
  4. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Hello Sylvia

    I keep popping in to see if you have up-dated on how todays visits by CPN and C.... went. Hope things are calm & peaceful for you both.

    Love
    XxXxX
     
  5. sue38

    sue38 Registered User

    Mar 6, 2007
    10,854
    Wigan, Lancs
    Dear Sylvia,

    Just catching up with your thread having escaped to Greece for 12 days. :)

    We are some weeks ahead of you on the 'Day Centre Merry-go-round' my Dad having started at Day Centre early May.

    I could have written your posts, the optimism that this would be the god-send we were hoping for; the guilt when we felt we had made things so much worse; and the dawning when the day centre's assessment of the day was so different from my Dad's. According to my Dad he had had nothing to eat all day, whereas according to the Day Centre he had tucked into a full roast dinner followed by pudding and custard...

    My Dad gave my Mum hell when he came home and we were for knocking the whole thing on the head but my Mum was reluctant to shut the door on the only help offered to us and preferred to wait until SS decided that it wasn't working (lest we were labelled uncooperative and our file closed :eek:)

    My Dad missed a couple of weeks, and therefore SS's assessment of whether the Day Centre was working due to his hopitalisation, and we are still waiting for chocolate tea pot to re-arrange the assessment as, guess what, she has been on leave. Third time since we were assigned to her in February. Just wished we had been warned we were getting Judith Chalmers as a SW, on second thoughts old Judith may have been more use... :rolleyes:

    The Day Centre has a notebook for my Dad in which they record how he has been, what he has done, what he has eaten etc. which is very useful (when they remember to send it home with him). Could you provide a book for them to complete if they don't provide them?

    Now the Day Centre days are becoming calmer. We are still waiting for the assessment, but even if they are not the ideal situation for my Dad (not sure if 'colouring in' is going to stimulate him) at least it gives my Mum a few hours when she can relinquish the care to someone she trusts.

    So all I would say is give it time. Dhiren may actually be enjoying it, but like a child going to nursery will make you feel guilty that you have 'abandoned' him.

    Is the Day Centre exclusively for people with dementia? My Dad's isn't and I'm not sure that's a good thing...
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    70,084
    Kent
    Dear Cliff.

    I`m so sorry to hear Dee is growing weaker. It must be really distressing for you.

    Love xx
     
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    70,084
    Kent
    Dear Sue,

    Thank you so much for your post. Your mother`s experience almost mirrors mine.

    You have made me feel so much better about my decision to persevere.

    The day centre Dhiren is going to is for people with dementia only. It is in the same building where Dhiren sees his consultants and in the complex incorporating the assessment ward. The OTs at the day centre are the ones who ran the 8 week memory clinic course for patients and carers, which we both attended.

    I still have to find out who runs it. Because it seems to be under the umbrella of the consultants, I imagine it is run on the NHS.

    Love xx
     
  8. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Hi Sue,

    I am sure that your family experiences will be of a help, as well as comfort, to Sylvia.

    Was interested to read your comment:
    Lionel certainly never attented a dedicated 'dementia' centre......but then there was nothing in the area (25 mile radius) for under65's. The lady that ran his centre was so far thinking, as she assembled younger people (just one day a week) to mingle. Thank goodness she did. Of course did not suit all.

    Just my observations.

    Utopia.....Nirvana........not in my lifetime I guess.:rolleyes:
     
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    70,084
    Kent
    Today`s update.

    I told Dhiren the CPN would be visiting us this morning and he was fine about it. He stopped for over an hour, and sat in the garden with us. He tried to encourage Dhiren to join the conversation but put no pressure on him. The cPN is quite laid back which is good for Dhiren.

    Paul phoned while he was here. While I was speaking to Paul, I saw through the window how animated Dhiren had become with the CPN, once he was in a one on one situation. Paul wanted to stop our chat when he knew the CPN was with us, but I prolonged it giving the two men more time without me.

    When I returned to the garden, Dhiren came into the house, just to go to the toilet, not because he was anxious. It gave me time to talk to the CPN. He was good to talk to and I really appreciated it. He visits someone else in the area every two weeks on Friday mornings and asked if it would be convenient to visit us at the same time. Of course I was delighted.
    When he left, Dhiren took him to the door and shook hands.

    The CPN knows about TP, reads posts and knows I am Grannie G.


    Then in the afternoon we were visited by C. Dhiren greeted her and we spent another pleasant hour chatting. Dhiren made her a coffee and tea for us.

    Whilst he was making the drinks she told me she wouldn`t be able to take him to the day cantre on Monday if he refuses to go. She will be on leave and had forgotten. There is also a ruling that there should be two people in attendance the first time anyone is driven to the centre after refusing to go with the transport, which is perfectly understandable.

    So I have the name of the other supporter who will be waiting for Dhiren at the centre. If he refuses to go, I will phone him and take it from there. It`s not a problem. These things happen.

    When C left, Dhiren asked if she was the woman he saw at the clinic.

    By the end of the day I was shattered. I can`t remember when I last had so much conversation in one day. And best of all, it was all constructive.
     
  10. sue38

    sue38 Registered User

    Mar 6, 2007
    10,854
    Wigan, Lancs
    Hi Connie,

    I'm not sure how to phrase this in a way that is not offensive.

    My Dad is 83 and is obviously a lot older than Lionel, so if my Dad and Lionel had been at the same Day Centre Lionel would have thought 'what am I doing in the same place as that old git..?' ;)

    At my Dad's Day Centre there are people of all ages who all have a variety of 'disabilities' (sorry, hate that word:() some of which are more obvious by their physical appearance than others, for example there are people with Down's. My Dad, I'm sure, will look at them and think he doesn't belong there, as I'm sure the people with Down's will look at my Dad and feel exactly the same.

    My Dad has (on the surface) no grasp that he has dementia and we try to potray the Day Centre as a club, but when there are people who are so obviously in a different boat to my Dad, the facade is more difficult to maintain...

    Again, I'm sorry if I have caused offence to anyone :eek: I just feel that people with non-physical problems should not be lumped together.
     
  11. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Sue, I cetainly was not offended, and of course, would not wish to offend.

    Life is unfair enough, and for anyone with any form of disability and/or dementia, well it just sucks.

    I will close with my previous thought:
     
  12. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Sylvia, my head is reeling just reading your post.

    So good to know that you felt the day was constructive. Many of us have personal experience of dementia, but only you are living with Dhiren and your own journey.

    From my own experience I feel you are still handling things so well. Not expecting too much from your dear man, and yet fighting all the time for him still to have his place in todays world.

    Look after yourself too, for only then can you take on all his challenges.

    Thinking of you both.
     
  13. sue38

    sue38 Registered User

    Mar 6, 2007
    10,854
    Wigan, Lancs
    What a wonderful way of phrasing what we are all striving for. Thank you for that.:)
     
  14. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Sylvia, I'm not surprised you were shattered.

    But what a good day! So positive that people are actually talking to Dhiren, and understanding where he is coming from.

    Hopefully now that he is getting to know more people, and in his own surroundings, he will feel less threatened, and less dependent on you.

    Oh, I agree entirely, Sue. We had to wait for a place in a day centre run by Alzheimer Scotland, and it was worth the wait. I looked at other centres and just couldn't see John in any of them. The staff were all trained, and the activities were geared to them as individuals.

    But we can dream..........:)


    Good advice, Sylvia.

    Love to all,
     
  15. janjan

    janjan Registered User

    Jan 27, 2006
    229
    Birmingham
    Brilliant news Sylvia. The fact that Dhiren was so relaxed and not on the defensive puts you at ease too.
    By the way Dads on the mend, now in a bucket chair, and i heard him trying to sing to Neil Diamond when they had a entertainer at the N/home on Friday. Totally baffles me, can't talk but sang at least 3 words of a song. :D
     
  16. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    70,084
    Kent
    Thanks Jan

    I`m really pleased about your father. It`s amazing he was able to find the strength of character to fight back.

    I wasn`t the only one who who was exhausted from the visits yesterday, Dhiren was too. He went to bed at nine, woke at eight, but stayed in his pyjamas all day. I didn`t mind as he was relaxed and pleasant all day.

    He even gave sundowning a miss.
     
  17. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    Its a pity you have to go through exhaustion to miss the sundowning!

    I hope you feel more rested now Sylvia.

    Love Jan
     
  18. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    70,084
    Kent
    Afraid not Jan.

    The questions started at about 4.30am............
    D `How long will we stay here?`
    S `We live here.`
    D `Is this our house?`
    S `Yes.`
    D `Where do the others sleep?`
    S `There are no others, just you and me. Can you see others?`
    D `He leaves his car in our drive?`
    S `There is no car in our drive.`
    D `Who is your wife?`
    S `I haven`t got a wife. I`ve got a husband. You.`
    D `Do you know my wife?`
    S `I am your wife.`
    D `Is Paul your brother?`
    S `Paul is our son.`
    D `What is my brother`s name?`
    S `I don`t know your brother.`
    D `He is in Manchester`.
    S `I think he will be in India.`
    D `I will go one day . I will get a train.`
    S `Go to sleep.`
    D `Have you any family?`
    S `I have you and Paul.`
    D `Have I any family?`
    S `You have me and Paul.`
    D `Who are our neighbours?`
    S `C&T`
    D `Have I got any children?`
    S `You`ve got Paul.`
    D `Have I got a daughter?`
    S `No.`
    D `Have you got a daughter?`
    S `No`
    D `Why can`t I remember?`
    S `Because you`ve got Alzheimers.`
    D `Am I mental?`
    S `No. You`ve just lost your memory.`
    D `Can`t anything be done?`
    S `They can help you at the Day Centre. And you will be seeing DR. B on Thursday.`
    D `What can they do?`
    S `They can keep an eye on you.`
    D `I know those curtains.`
    S `They are from the old house.`
    D `I know that light fitting.`
    S `That is from the old house.`
    D `It`s nice here. Peaceful and quiet.`
    S `Well go to sleep now. It`s too early to be awake.`

    ...........and that was only half of it.
     
  19. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    Oh dear Sylvia: I am so sorry!

    David also keeps asking 'are the others here' or 'have the others gone'? Yesterday he said, 'all this will be ours one day' - then 'where are my Mum and Dad'. Sad he does not remember the struggle and pride we had in getting this house of ours together!

    Will Dhiren watch the golf this afternoon? Unfortunately D does has no interest in any tv now and he is reading less and less.

    Keep heart Sylvia - you have us all on TP gunning for you!

    Love Jan
     
  20. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    70,084
    Kent
    Thanks Jan.

    I had wondered if these other people were from the past.

    When he first came to the UK he lived in digs so the houses were full of different people. And when he bought his first house, he had lodgers, to help fill it and pay the mortgage, so I wondered if expecting others to be in the house was going back in time.

    But in those days, no-one had a car in the drive. And when he asked who my wife was, it reminded me of another post about a husband thinking his wife was a man.

    Love xx
     
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