Twixt rock and a hard place

Discussion in 'ARCHIVE FORUM: Support discussions' started by Brucie, Oct 24, 2005.

  1. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Yep! Norman is spot-on. Thanks everyone. :D
     
  2. Linda Mc

    Linda Mc Registered User

    Jul 3, 2005
    1,881
    Nr Mold
    Bruce

    I wish I had the words to express how much I feel for you in this awful situation, just wanted to let you know I am thinking of you.

    Keep smiling!

    Linda x
     
  3. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Epilim

    Brucie,

    I just got back from the home, oh dear what a shocker, (he wasn't zombie like however so don't take my words as related to the epilim information I have also put in this post) Dad appeared to be very down, remote and then during dinner he seemed to forget how to swallow his drinks, forgetting to swallow is my greatest fear...he ended up choking quite severely and I had to not give him anymore...sigh, what did I say about feeling like I was beginning to cope?? Shoulda known the fates would bite me in the ....for daring to think so.

    <shrugging> Nah, honestly I am alright, sad and was distraught but sad is different to not coping....its just another blow, as you said, its inexorable... :( I will not bow down to you &#$%^ disease! :mad:

    Anway I had the name 'Brucie' written on my hand all day so I would not forget to ask about the Epilim dosage Dad has. After talking to the registered nurse I have the following to report:

    1. Epilim as you no doubt already know but I'll post it here for others as well, has a wide range of uses, originally developed for epileptics, helps prevent seizures and fitting and has also been found useful as a mood stabiliser for people suffering from things like Manic Depression....apparently it is a far safer drug than what was originally used for this;

    2. Epilim dosages are a very individual thing depending on what it is being used for and what other medications the person is on. It can also to a lesser extent depend on a person's size so bear in mind that dad is 6ft 2 and although not at all fat, and far from it, and never has been, he's not a string bean, there's something big about him other than his height, perhaps its his spirit :p ;

    3. According to the RN, it can take several weeks for the person taking it to adjust to it so he advised that you give it over a month at least to see if their is an improvement from the original zombie effects;

    4. Apparently Dad's dosage is very very low compared to many who take Epilim, he is only in the milligrams whereas some are easily into the grams, so if you find that Jan is on much greater amounts than Dad don't jump to conclusions the doctors may have a reason for that, they may feel the dangers are far greater for her than Dad to have another fit;

    5. Dad originally started out on 800mg a day given in 200mg doses 4 times a day evenly throughout his waking day (normal hours pretty much except perhaps a slighly later start and earlier finish than unafflicted folk - don't base this on my waking day because that is extremely long as you know!)

    6. Dad is currently on 600mg a day still given in 200mg doses, but now 3 times a day.

    Hope this helps in some way,
     
  4. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Nat and thanks for the information - I will check on Jan's dosage when I visit today.

    Sorry to hear the visit was not so good. Jan does have up days and down days, and increasingly I get instances where her food and drink go down the wrong way.

    Grit teeth, carry on... eh?
     
  5. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    Braveheart, here's another big hug from Belfast for courage and comfort.
    Keep your chin up and your kilt down and carry on another day, hopefully it will be better for you and your Jan.
     
  6. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Nat, Well I asked the nurse in charge and she said Jan was on a dosage of 5mg, but that seems hugely low compared with the dosages you mention, so I wonder if the nurse is correct, or whether the way the medication is administered is just different.

    McK, sorry not to have replied to your helpful [but sometimes scary] replies. Sounds like you have been to hell and back a few times.

    Everyone else who replied, just thanks! Where else can one get so many good friends so quickly?

    Update on Jan.

    I couldn't get to see her yesterday as I had plumbers in all day doing work on my bathroom and it was too late to go by the time they left. But the doctor saw Jan and on being told my concerns about the effects of the medication, reduced the dosage to 2.5mg.

    Today when I saw Jan, she was more alert again, and tried conversation. That's the good side. She couldn't move off her back though, so it may be that she is losing the ability to move very much. I did sit her up against me and gave her some of her favourite cake and some tea, but she had a small choking fit partway through, so looks like there's another step down there as well.

    We made conversation of sorts [I can hear Scotty from Star Trek saying "It's conversation, Jim, but not conversation as we know it"], and that's all I wanted.
     
  7. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Epilim Quantities

    Brucie the dose I stated for Dad is most definetly right (with regards to him)because not only did I write it down, (I took in a paper and a pen!) but when I heard the nurse talk about it, it all started coming back to me, I'd heard it all in the past in various conversations with my mum and doctors. So there is no question of a mistake at this end. As far as I am aware Dad gets it orally, crushed up tablets but I will double check if I visit today, or otherwise tomorrow.

    So either the nurse I spoke to wasn't kidding when he said dosages are very individual (!) or sheesh they're really packing it into him!?? Bizarre! The nurse did also say it is very hard to overdose someone on this medication, thats why it is also now the drug of choice for mood disorders, if all our facts are straight, no kidding!? I'll ask the home Dad is at again all about it if you can let me know how Jan gets it, orally or otherwise?

    Can you bring it up with Jan's nurse's doctors too and ask them if they told you right and if so, why would someone with a similar condition be getting so much more?

    Thanks,
     
  8. noodle31

    noodle31 Registered User

    May 1, 2005
    81
    kent
    Hugs are good for the soul

    {{{{hugs for all}}}}

    Hugs are truly good for the soul, so I send hugs to carers and those being cared for, please pass them on.

    My dad when I visit, all he wants to do is hug hug hug

    thinking of you Brucie, and Norman, you both have offered such good advice to me.....I wish I also had the wisdom to offer some back, but still feel confused and overwhelmed by this awful situation.

    I hope when I return to work in April 06, this helps my role as a carer to be even more caring and understanding than before

    lessons are always here arent they?

    hugs

    Love Jane x
     
  9. blue sea

    blue sea Registered User

    Aug 24, 2005
    270
    England
    Thinking of you Brucie and Norman. You're always there for us with support and advice. Wish I could help with more than words.

    Blue sea
     
  10. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Brucie, how are things? Love She. XX
     
  11. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Norm, are you and Peg OK, not heard from you for a while. Love She. XX
     
  12. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Dear Sheila
    I am still in there .
    Still posting.
    I have had a few rough time of late,things don't get any better,but there again they never will.
    You know the pattern,pushed to the limit one day,--can't cope-- then it gets better the next day and that's how we go on.
    My answer to the question "How are you?" is "surviving"
    Love
    Norman
     
  13. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dearest Norm, I used to use that phrase so much, still do at times. Folk ask how you are, but they kind of glaze over if you start telling them too much heavy stuff don't they. Surviving is definately the best way to describe what caring for a dementia sufferer is all about for the carer. Thinking of you, loads of love and a big, big hug my love, She. XX
     
  14. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Update on medication...

    Jan has a viral infection at present... temperature, etc.

    Doctor was with her when I arrived. Said they are only using paracetamol at present to bring down her temperature. They will use antibiotics only if necessary.

    At the same time she told me that they were discontinuing the Epilem.

    She has not been herself [inasmuch as she can ever be any more] since she has been on this medication, so it will be interesting to see if she returns just a little.

    Reason for discontinuing is the soporiphic effect and the fact she only averages a major fit every 6-9 months anyhow.

    We will review returning to the medication in the light of time.
     
  15. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Hello Bruce

    I am sorry Jan is unwell at the moment, lets hope for an improvement very shortly for both your sakes.

    It will be interesting to see how Jan will be when the virus has gone and she is free from te new drug.

    Hope she gets better really soon.

    Kathleen
    xx
     
  16. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    Braveheart

    I'm so sorry to hear of Jan's illness. I know how worrying infections are mum had them continually. I hope and pray that you'll see an improvement in Jan tomorrow.

    A big hug for strength and support.
     
  17. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Bruce
    sorry to hear about Jan,you look after yourself,thinking of you
    Norman
     
  18. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Bruce, echoing Norman's post. So sorry to hear about Jan, just you take good care of yourself. Love Con.
     
  19. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Brucie, thinking of you all, how are things today? Love She. XX
     
  20. katieberesford

    katieberesford Registered User

    May 5, 2005
    114
    south wales
    Hug

    Hi Brucie

    Just a line to say I'm thinking about you and Jan. Hope things are better today.

    Katiex
     

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