Hi can anyone explain please???

Discussion in 'ARCHIVE FORUM: Support discussions' started by noodle31, Aug 8, 2005.

  1. noodle31

    noodle31 Registered User

    May 1, 2005
    81
    kent
    Hi again

    I not been here in a while, apologies....

    A brief outline (in case you forgotten me)

    Dad had a bad turn approx 17 weeks ago when he got up and didnt recognize my mum....

    we took him to casualty as he was so very confused we feared he had had a stroke or similar....

    Anyway after time each week at an assessment unit, and various blood test etc we were given a diagnosis of Lewy Body Dementia with Parkingsons

    This last couple weeks mum has had to call an ambulance due to dad saying he having chest pains...

    On weds morn of last week the ambulance took him into hospital to be cared for to see what was going on with the pains.

    He was addmitted, and mum at last got a long deserved rest..

    He also has had CAT scan and a MRI scan....

    OK now this is where i would appriciate some advice...


    one of the scans has shown he has a shrivelled brain, or brain shrinkage...

    he is very confused, aggressive and can barely walk now due to the parkingsons

    the hospital have advised and referred him to be placed on the ward attached to the assessment unit.

    Mum has been told today that dad wont be coming home. never.

    why are they not referring him to a nursing home?

    is it because his life expectancy is very short? ie weeks or a few months rather than yrs?

    i know it difficult to give an answer but i just want someone to be blunt.

    the detrioration over the past 17 weeks has been so very very speedy it is untrue. I have watched it happen and yet still cant believe my poor dad is living this nightmare.

    I miss him

    I feel so very very sorry for him, he must feel so lonely in the few lucid hours he has

    he must feel so very scared

    please i just want some ideas of how much longer his suffering will go on

    thank you

    love Jane x
     
  2. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi Jane, what a sad time for you all. I would guess that they want to make sure their diagnoses is correct. That way, they can tailor medications and treatment to suit. This would be easier to monitor in a hospital setting. These are just my own personal thoughts of course. It may not mean your Dad is near to death, only the team in charge of his case will be able to give you this sort of information. Make an appointment to speak to the consultant with your Mum to ask what is happening. If it were me, once I knew the reasons, if satisfied, I would go along with it and hope for the gentlest outcome as far as my Dad were concerned. If he is in hospital, there is a doctor always to hand, this would not be so in a nursing home. If he should need extra medication or treatment, in hospital this is easy to arrange. Once released to a nursing home, he would be treated as an out patiant. They may feel this is inappropriate right now in his case until they are sure of how things are going. It may be that he will stabilise. If he does, then a nursing home would be able to give the care he needed. Thinking of you, love She. XX
     
  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hello Jane

    I'd agree with Sheila in everything she says.

    Beds on assessment wards are not that many so, if they felt he was that bad they could not help him, then they would move him elsewhere.

    I'd guess they feel they can do things to make his health and situation better, but they don't quite know which route to take yet - which is best for him, as not everyone takes to medications in the same way. That is what assessment is all about.

    The situation you have at present is one of the worst we face with conditions such as dementia, etc. Everything seems out of control, everything is uncertain, everything we had planned suddenly goes up in smoke. In particular we have to come to terms with the fact that they may never ever return home with us - that is almost harder than anything.

    My wife has been in care for four years now, and every time I am in a supermarket and think "I hate supermarkets!".... I then think "but I would give anything to be here walking down the aisles with Jan - but she will never in her life go into a supermarket again". It clearly takes longer than I have had to come to terms with it, but the way to make it bearable is to focus totally on the person with dementia. Make whatever their day can be like just that much better in some way. At least that way we can feel we are helping to some degree.

    Don't be afraid to talk to the consultant/doctor/nursing staff about your worries.

    ... and take cae of yourself!
     
  4. noodle31

    noodle31 Registered User

    May 1, 2005
    81
    kent
    Thank you both...

    he is on the assessment ward now..he is being moved to another ward which has the same name as the day centre he was attending but i dont think it is an assessment ward.

    time will tell...

    Bruce i have also had similar thoughts..

    when mum came to dinner on friday, the first time ever without dad....i thought oh, dad wont ever come to my house again

    i know we have started the grieving process, it is so very very difficult.

    i do believe that there isnt much time left, he is but a shell of what he was

    i keep remembering back to when i was a little girl, and he was my hero

    he is still my hero

    but i miss him

    i keep crying

    sorry
     
  5. jks

    jks Registered User

    Jul 2, 2005
    67
    West Yorkshire
    Jane, my heart goes out to you, it really does. I am in tears reading your post about how your Dad was your hero....mine was my hero, too. Now, I'm afraid that my Dad really has 'left the building' and instead, there's a confused, awkward and beligerent old chap left in his place. He may look the same, but that's all.

    You have my sympathy,

    Take care,

    Joanne
     
  6. noodle31

    noodle31 Registered User

    May 1, 2005
    81
    kent
    {{{hugs}}} Joanne

    Yes that is how it is isnt it? like they have left the building and someone else is in their place

    A cruel cruel illness..

    I am going up to see him tonight, the first time in 10 days as i have had a throat virus i didnt want to pass on.

    I am dreading it in many ways, and yet the thought of just holding him tight and giving him a cuddle, i just want to do that now and never let him go

    The nurses dont give cuddles do they?
     
  7. jks

    jks Registered User

    Jul 2, 2005
    67
    West Yorkshire
    I hope your visit goes well tonight. My Dad has times when you'd hardly know anything was wrong (usually when the CPN visits!) and at other times he is dreadful, shouting and ranting on, has my Mum in tears most days with his behavoir. Walking on eggshells is the norm now. Best of luck tonight.

    Joanne
     
  8. karen_white

    karen_white Registered User

    Apr 21, 2004
    72
    Berkshire
    Hi Noodle
    Dad had a very similar situation that lead to his diagnosis of vascular dementia. Dad woke up in the morning and wanted to get the dog off the bed. He didn't recognise Mum either and once he'd moved he had a fit. I was called into their bedroom and made sure Dad was made comfortable while Mum called an ambulance. He was in intensive care for 36 hrs and kept sedated - he'd had a stroke. After some time he was transferred to an assessment unit. He did eventually come home, but this was the start of the dementia (stroke induced) rather than a diagnosis following a stroke where dementia symptoms were noticeable. Dad was at home for 5 years before being taken back into an assessment unit and ended up in hositpal for a number of weeks as they wanted to ensure his health was ok before transferring to a nursing home.
    Every case is so different, but it's good that you Dad's is being assessed to ensure his needs are correctly met.
    I hope that all goes well with that and appropriate arrangements/care are made.
    regards
    Karen.x
     
  9. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    The nurses dont give cuddles do they?

    actually, they are not permitted to as that would be considered assault.

    I know what you mean though, and that is what makes you unique to your Dad, and what makes all of us unique to our loved ones - we can show we care.
     
  10. noodle31

    noodle31 Registered User

    May 1, 2005
    81
    kent
    Hi

    well went to visit him and he has been transferred from the medical ward to the proper assessment ward. a ward the the elderly with mental health problems

    i feel so cross with my s-i-l she got totally the wrong end of it all..

    no he poss wont be going home as it is now unsafe for him but he isnt deemed as dying, not yet....

    he was very confused, the parkingsons is very intense at the moment.

    i gave him lots cuddles and told him i loved him lots

    he has been very aggressive and hit a nurse this morning...

    i had my 20wk baby with me, and as we were going i held her so he could give her a kiss goodbye and he asked to hold her properly so he could cuddle her.

    i held her too, i supported her in a way he felt like he was holding her.

    my dad has NEVER asked to hold a baby before, he refuses usually saying they too small...

    this touched me tonight, i will hold that memory forever

    he told me he loved me, he knew who i was

    that meant so much
     
  11. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Noodle, hold that precious memory. I so wanted my Mum to be there when her first great grandchild was born. She died long before this little mite, due in Sept was even a twinkle in his/her father's eye. You have a very precious moment there, your Dad and his tiny grandchild. This despicable disease couldn't take that from you, he was too strong, that was the power of love. Love is stronger than this disease. All the time we love our stricken ones, the disease can't have the last laugh, we do, because we have those precious moments to treasure. Lotsaluv, She. XX
     
  12. noodle31

    noodle31 Registered User

    May 1, 2005
    81
    kent
    Hi Shelia

    Thank you

    Today I am going to laminate some pictures to take up on saturday...

    the nursing staff have asked us to give him a couple days to settle in so they can begin their assessments.

    I have decided to take my 4yr old - Nerys with me too, as my dad adores Nerys and after seeing him with Holly (the baby) I think she will lift him lots..

    He deserves some happiness

    and lots of cuddles

    i need to talk to the older children (Emily -12 and Sean 9) to give them the option of visiting

    thank you for being here

    love jane x
     
  13. noodle31

    noodle31 Registered User

    May 1, 2005
    81
    kent
    Thank you Nada

    love Jane x
     
  14. jks

    jks Registered User

    Jul 2, 2005
    67
    West Yorkshire
    Hi Jane
    Glad your visit went well, and I'm sure the lovely memory of your Dad holding baby will be of tremendous help when things aren't so good.

    My daughter is 11. She loves our weekends at Nannie & Granddads, though I have to say she is slightly wary of my Dad now. He has scared her with his (verbal) outbursts, and, although she knows that he is poorly, she can't get her brain around why he thinks people live in his attic and steal his ornaments. Or why he thinks we're stealing his money. I think she tries to make sense of his behavoir, but can't. Having said that, if I'm perfectly honest, he scares me a bit too!


    All the best,
    Joanne
     
  15. noodle31

    noodle31 Registered User

    May 1, 2005
    81
    kent
    Hi Joanne

    yes I get scared too, but I have an advantage ( i think) of working in mental health...

    so altho i do get a bit anxious when he is getting angry - i think it is more a childhood memory, that dad being cross means big trouble lol

    i am looking forward to him seeing the smaller children again...all of them there will be too much i think..i will have to arrange for nerys to be looked after while i take the older ones, if they want to go of course.

    I think the unknown is just damn scary...and noone knows what this illness is going to do next :mad:

    look forward to chatting more to you, it is nice to know there are others who have children going through this

    love Jane x
     
  16. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hiya, funny thing, but I have found that kids often accept these things far more easily than we do. Our neice, used to come round, Mum always had time for her, they would sit and draw or paint together, really helping each other with tricky bits sometimes. Amber would always ask, "Wheres Lily?" the moment she arrived. My Mum was always good with kids, but Amber didn't really know her till she was in the early stages as that was when she was born. Don't worry too much, kids can often see more than we do in things. Love She. XX
     

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