coping with 'near the end'

Discussion in 'ARCHIVE FORUM: Support discussions' started by susan, Aug 21, 2003.

  1. susan

    susan Registered User

    Aug 18, 2003
    125
    east sussex
    Has anybody got suggestions for me to help mum cope with seeing Dad in such a state - he's in a nursing home, she has never forgiven herself for not coping - he is now bedridden, incontinent, very little speech that you can understand and very emancipated. For the last 3 years he has suffered tia's and although we visit weekly, it becomes harder and harder to see him. How long can this go on for? We really are struggling!
    I would appreciate any suggestions
     
  2. Angela

    Angela Registered User

    May 28, 2003
    151
    Wales
    What can I write?
    I read your posting a week ago and thought "I cant reply to that one". Now that no one has replied Im left thinking that you may think no one cares, which is certainly not the case.
    To answer your question... No one will be able to tell you how much longer you will see your Dad in this way.
    Please tell your Mum, and know yourself, that there is a point, which varies dramatically, when we cannot cope with our loved one any longer at home. We are not wrong, selfish uncaring etc, we just cannot manage either the physical or mental torture ourselves, and so the person with dementia is quite basically better cared for in a care home.
    I'm afraid visiting Dad is not going to get any easier.
    You have to decide if you should visit or not.
    I have clients in care homes, where family members do not visit at all. I visit and give the family a ring.
    I have other clients, who like yourself visit regualrly, and struggle to live their own lives for the pain that the visit causes, and yet they continue to visit. There is not right or wrong.
    As for advice on how to cope? As long as Dad appears to be as comfortable as possible, then you can only console yourself with this fact.
    Be strong, and keep in touch
     
  3. SYDNEYH

    SYDNEYH Registered User

    Aug 30, 2003
    1
    EASTBOURNE
    Saying Goodbye

    Susan

    I too am watching a lady I have loved slowly slip away. I suspect that the few replies to your plea stems from the feeling of helplessness we all feel. We have to say goodbye to our loved one in stages, Once when the dementia strikes and the person changes and then at each crisis point.

    Sharing our problem is one answer. does your local Branch have any coffee mornings or other meetings where you could meet other carers? Just comparing notes and .. yes .. sometimes sharing an amusing experience can bring relief. If possible, helping others in the same boat can be a therapy for you too

    The main thing is to accept that you are not alone. Accept al that the Society can give you in help and then, if possible, repay that by helping others. I wish you and your family all the strength they need.
     
  4. susan

    susan Registered User

    Aug 18, 2003
    125
    east sussex
    Dear Angela and Sydney
    Thank you for your replies - yes i agree it is a state of helplessness especially for my mum who is a person that will not let anyone other than family support her - she has never been one for close friends. The trouble is she relies on her children for support which at times is very draining especially as i am the only one in close contact - my sister and 2 brothers live at least 1 hour drive away and are not good at staying in contact. My brothers have not seen my dad for 2 years!
    I am lucky that my husband and children are very understanding and supportive, but there are times when i just want time to do my own thing and not revolve around mum phoning - oh that sounds so selfish - but that is how i feel. 3 years on after Dad left the house to go to hospital - i still feel guilty about him going and what we did to him - this disease is so destroying to not only the patient - but family as well.
    I am in contact with the local society and it was them that helped us get Dad a nursing home after a long fight for funding. Thank you again for your support kind regards Susan
     
  5. Angela

    Angela Registered User

    May 28, 2003
    151
    Wales
    Hi Susan
    How are you?
     
  6. susan

    susan Registered User

    Aug 18, 2003
    125
    east sussex
    Dear Angela
    Thank you for you concern - i'm feeling ok at the moment, although wehave some problems with the nursing home at the moment - they sem to be struggling with staff and there are a lot of staff who don't speak english. Dad looks like he has had another mini stroke - his face is all drooped and he's very agitated.
    Mum got the doctor to visit on Friday just to check him out, as we can not talk to the nurse as his english is so poor. He is also having other people's prescribed creams put on him - they tear the labels off and leave them in his room. Waiting to hear still from doctor hopefully Monday.
    I'm back at work now and being busy helps take your mind away from reality - mum is not well at the moment filthy cold and feeling something is happening with Dad - she can't put her finger on it though - intuition?
    Well will speak soon thank you for your reply
    kind regards Sue
     
  7. Angela

    Angela Registered User

    May 28, 2003
    151
    Wales
    Hi Susan
    And thank you for your reply
    What a bad state of affairs in that home....
    if you had nothing better to do I think I would ask you to give the Care Standards Inspectorate a ring!
    Work yes, we love it and we hate it.
    Sorry to hear Mum is not feeling too good. I wonder... I`m a great believer in seeing things that the eyes dont .
    I truely hope the situation improves for you and your Mum and family.
    Please stay in touch
     
  8. susan

    susan Registered User

    Aug 18, 2003
    125
    east sussex
    Dear Angela
    Sorry for delay in replying - hectic on all fronts - work, children and life generally.
    Things have improved in the home at present - inspection due!!!
    I'm struggling with seeing Dad at the moment as there is no one there - he's just so far down the line now - it's like visiting a ghost of some one else certainly not my dad.
    i feel really guilty sometimes as i just don't see the point of talking to him anymore - maybe just a bad day - but how long does this destructive illness last - i know no-one knows!!
    Hope to speak soon kind regards susan.
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.