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When do you give up. Think I have to.

Discussion in 'ARCHIVE FORUM: Support discussions' started by rhallacroz, Mar 29, 2008.

  1. rhallacroz

    rhallacroz Registered User

    Sep 24, 2007
    Hi All
    Know you will try and help thats why I am writing my dad has vascular dementia and probably in the final stages. He has had repeated chest infections for the last 2 months and deteriorated with each one. I nurse him at home with mum and a good care package but it doesn;t seem enough. He has become really agressive of late and I think I am his worst enemy when the carers come and he wont co operate I have to help and I think he hates it and lashes out at me. I sort him out and when I leave I feel so sad that I think he hates me it is in his eyes and I love him so much.
    I can;t stand the thought of him going into someones elses care as I dont think anyone will look after him like I do. I know what your all going to say and I know what I would say to my best friend if it was her in this situation it is just so hard. I have looked at so many places and not one of them comes up to my high standard, Pleas

    Please let me know what you think. I feel so sad
    ANgela xxxx
  2. BeverleyY

    BeverleyY Registered User

    Jan 29, 2008
    Ashford, Kent
    Hi Angela

    My Dad has Vascular Dementia and lives with us. Up until 10 weeks ago when Mum died I never really worried about the 'end'. They've lived with us 5 years and I guess I kind of felt my Mum would always be here.

    I have shed many tears worrying how I will cope when I get to where you are now, and how I will feel if I cannot cope. The guilt etc. I do know though that that time will probably come and that I will hate myself for 'sending him away' to be cared for by other people. However... I think, when it gets to that stage you have to tell yourself it is not them you cannot cope with, it is their illness. I am sure if your Dad could see you from his eyes before this illness he would be telling you to let go.

    Best wishes with the choices that face you. I too will be there one day :(

    Big hug.

    Beverley x
  3. gigi

    gigi Registered User

    Nov 16, 2007
    East Midlands
    Hi Angela,
    Can I ask..?

    Does your dad just "play up" when the carers come in to help?

    Would you trust the carers to do their job..and leave you out of it?
    Hmmm...I cared for my dad for only 7 weeks while he died from cancer..at home.. I really identify with what you are saying..I got to the point that I thought nobody could take my place..that's not a good place to be, Angela.

    You cannot do it all..

    Try to step back..when the carers come in..leave them to it..you say it's a good care package..then let it happen..

    Accept the help..my dad used to play up when carers came in and I wanted to protect him..he didn't have dementia..but he was very ill..
    Once I withdrew and let them get on with their job things did become easier for us all..And dad did accept them..I think he took his lead from me..he saw I trusted them..so he did too..

    I hope sincerely this has been of some help to you..

    Love Gigi xx
  4. rhallacroz

    rhallacroz Registered User

    Sep 24, 2007
    Thanks Gigi
    For those kind words of wisdom. I do try and let them get on with the job. I supose because I am an RGN myself i feel that I should be helping them and to be honest it often needs 3 of us. He will not co operate and is still quite strong and lashes out when they try to change him. He is not always like this but lately he is terrible. They often say oh we can;t deal with him and have to leave like tonight they say if he refuses then we will just have to leave. I then have to deal with him when they have gone Hoisting on the bed on my own and trying to clean him up.. This is so hard as then i feel that I am the baddy and hate the look of hatred and hurt in his eyes. I just can;t stand it any more. Half and hour later he is sorry and sometimes cries as if he remembers.
    Gigi I do admire you nursing your dad to the end well done you it is so hard is it not. I would hate to put dad in a home,
    Thank you for your kindness
  5. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Angela, we all hate having to let our loved ones go into care. But honstly, there comes a time for most of us when we need th professionals to step in.

    It takes three people to change John, and even to sit him up in his chair when he has slithered down. he also has had repeated infections, and each one has weakened him more.

    If you are thinking the time has come, have a good look at all the care homes in the area and see if there are any possibles.

    Only your mum nd you can make that decision, but it doesn't hurt to find out what the possibilities are.

    Good luck,
  6. janjan

    janjan Registered User

    Jan 27, 2006
    It's the hardest decision to make i think to let someone else care for our loved one's. I felt as if this was left up to me, for dad to go in a home over a yr ago, even though i have a brother and it really was up to mum to decide.
    But in retrospect it was the only choice we had in the end. Mom was suffering in her own health, and i became that ill in the end i was off work for 4 months 6 months after dad went into a home too.
    He is well cared for and they look after him so well. I think you know when it's time to make that choice, but because the decision isn't in black and white it's a had one to make.
    It isn't your dad that is shouting at you its the disease, it's so difficult to try to be objective when they are being so unlike themselves.
    When i see dad now i know he doesn't know me and that breaks my heart, but i know who he is and what he has done in his life and that's all that matters.
    Try not to be so hard on yourself your doing a brilliant job.
  7. CraigC

    CraigC Registered User

    Mar 21, 2003
    Dear Angela,

    I felt the same and can honestly say that none of the homes that I visited before dad went into care came up the kind of standard we expected. It was painful putting dad into care but after watching mum struggle for the last six months it was the only alternative.

    All I can say is that until you become accustomed to the care home world it is a painful and gut renching decision. After time you can spot the good homes and the good carers so if at all possible take someone with you who may have had to choose before. If you find one that you feel may work go back speak to the staff and the manager just to make sure they 'care'.

    One of the soundest bits of advice I had a few years back when we made the decission was that you don't have to stick with your first choice, you can always move the person you love. It made me at least feel that the home we chose could at least be changed if things didn't work out.

    And without a doubt if we had left it any longer mum would have not survived caring for dad, even with all the help we could offer. It just became too difficult and she did not have the energy to do it 24/7.

    A good home will also let you be involved in the care, so don't feel like you are handing it over to someone else. The good homes that I've seen encourage relatives to be involved in care at any level. Visiting times should be open and this can really help with the transission. No harm in making sure they get it right!

    so sorry you are at the stage when such a difficult decision needs to be made. It is a long time ago for me, but I do remember the tears, anguish and terrible guilt.

    Kindest Regards
  8. gigi

    gigi Registered User

    Nov 16, 2007
    East Midlands
    Hello again Angela,

    You've had some even kinder words of wisdom from those who have been in your situation..I knew in looking after my dad that his time was limited..in a sense it was easier..

    With Dementia none of us know the time scale..it maybe has come to the point when you seriously need to consider care homes..nothing wrong with looking and weighing up the possibilities..the sooner you start..the better you'll feel..

    Even a qualified nurse finds it hard to do 24/7..you're also human..and have a life.
    My dad shouted at me and cursed me in the first few days of his illness..towards the end we became very close..but he didn't have dementia..
    I know it's hard for you..do the best you can for your dad..
    and don't try to do it all yourself..it won't work..a home that cares may be the way forward..

    Love Gigi xx
  9. lesmisralbles

    lesmisralbles Account Closed

    Nov 23, 2007
    I love my Ron so much

    Even to think about letting him go to the care of others
    It scares me.
    The day may never come, but I know, I cannot do it all. With all the love in my heart, one day I will have to let go.
    I think for all of us, we, will know that day.
    Love BarbX
  10. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Angela.

    Can I ask if you are having any quality time at all with your father, or is yours and your mothers life one long round of caring, feeding, washing, changing and tending to a very sick person.

    It sounds now as if your health is suffering too.

    Have you thought there might come a time when you and your mother are so worn down you will be unable to give your father care to any standard, let alone the high standard you keep.

    If you are not yet prepared to give his care to strangers on a permanent basis, perhaps you would consider respite care to give you and your mother a break. If the respite care proved successful, it might help you make a decision regarding more permanent care.

    And then you might get to spend some more pleasant times with your father.

    I really do feel for you, as all of us who are reading your posts know we will be in your shoes one day.

    Love xx
  11. rhallacroz

    rhallacroz Registered User

    Sep 24, 2007
    Thanks to you all. I hear what you are saying I am thinking about respite but need to find the right place for dad. He is so aware being a vascular dementia he was unaware It would be easier as he wouldn;t be phased by some of the EMI homes I have visitied. Its difficult getting my mum to understand how poorly he is. She is probably in denial as she still cooks bacon and eggs when he can;t swallow. I keep telling her. Tomorrow I am going to look again at some places and try and pluck up the courage to go for respite. It is a start Not going to be easy.
    Have to do something as I know we can;t go on forever.
    Lots of love and thanks to you all
    ANgela xxx
  12. Rose2008

    Rose2008 Registered User

    Feb 19, 2008
    a gentler way of caring

    Hi, I am so sorry things are so hard for you. I wanted to let you know that my experience was that moving my dad to a care home made it possible for us to visit and be wiht him in a very gentle and loving way, becasue the stess of not being able to manage the physical aspects of his care were removed. My mother visited every day to be wiht him at lunchtime, to give him his food and spend time wiht him and the carers helped wiht the other aspects of personal care arond that. eventually there was a good rhythm to the work of everyone, working together to provide a very predictable, calm and stess free setting for him which was much more relaxing. They say "it takes a village to raise a child" and I think maybe it takes a village to care for our elders too.
  13. lesmisralbles

    lesmisralbles Account Closed

    Nov 23, 2007
    Some of us can let go, and some cannot

    Please, can you, any of you ? tell me who is right, or wrong ?
  14. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    I don`t think there is a right or wrong, it`s what you can live with or how circumstances force your hand.

    I could identify so well with the post from Rose2008 `A gentler way of caring`. You put it so well Rose, I can`t imagine anyone failing to be comforted by your words.
  15. connie

    connie Registered User

    Mar 7, 2004
    Some of us don't have a choice.

    I can absolutely identify with Hazel's post #5, and indeed Lionel was very much like your dad when he was at home.

    I never think of it like that.

    It is was so hard to accept that I needed far more help with Lionel than was available at home. So a new home had to be found, where he would be loved and cared for, with 24/7 care, and I would be encouraged to be as hands on as I liked.

    They are out there, and I for one do not feel guilty. I am only human.

    Please don't be so hard on yourself.
  16. rhallacroz

    rhallacroz Registered User

    Sep 24, 2007
    Hi Everybody
    Well the hour went forward and dad was got up by his carers at what would have been 7am he was in fine mood and managed to eat a cooked breakfast well 6 mouthfulls which I thought was wonderful. Then it all went downhill he hasn;t eaten or drunk much since then. He just doesn;t know what to do with food and drink heartbreaking he just spits it out etc. You know the story.
    Well I decided to go and look at some homes one was typical nursing home big victorian house split into so many rooms some so small you couldn;t swing a cat round them and typical lounge where they sit round in circles staring at each other.
    Then the next one was lovely very swish but lots of care going on the food looked good and the had a room available which was bright and airy.
    Told mum and she said she would think about it tonight But dad is so bad now and needs constant care prompting to drink I know they could not possibly do what we do. They just haven;t got the staff. Very difficult feel sure it would hasten the end if I put him in . Will think about it.
    Thanks for posting to me I feel cared for.
    Angela xxxx
  17. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Angela, we do care about you, and your mum and dad too. And I understand how sad you feel about this.

    I'm absolutely not trying to put pressure on you, I know you and your mum won't do anything until you're ready.

    But if you've found a home that you like, and they have a room, would it be possible for you and your mum to do what I do -- go in every day and take over the feeding?

    It's tiring, but at least I get my sleep at night, and I don't have to struggle with the washing and changing.

    It's not the same, I know, and I miss John terribly, but I have such a good relationship with the staff, because I see them every day, and hear about their problems etc. And John's treatment has been superb.

    Just another consideration for you, sorry!

    I know you'll make the right decision for you all.
  18. Margarita

    Margarita Registered User

    Feb 17, 2006
    #18 Margarita, Mar 30, 2008
    Last edited: Mar 30, 2008

    I know what you mean , as my mother still aware , it was a hard step for both of us , when I wanted mum to go to respite as SS was encouraging me to do so .

    I know your father in a different stage then my mother so may really need full time care in a care home .

    If your mother father are not ready for it yet our not sure . why not give respite a chance give it a go , saying to your father that your bring him home after few weeks then go from they .

    May be your mother just scared like you are , like we all are of letting go , caring in a different way . My mother speak her mind still about how she wants to be cared for , so SS give me more support in supporting my mother at home with me , my mother now except that respite is part of that support so she go to respite when I need it ( even if I still have to remind her of it )

    every on different I know , all you can do is try it out see how it works , it never took that fear away from my mother of not wanting to live they for good, but it help me carry on caring for my mother at home with me .
  19. rhallacroz

    rhallacroz Registered User

    Sep 24, 2007
    Hi All
    I hear what you say but the thing is. My dad is needing one to one care almost as he doesn;t eat or drink unless you sit with him and constantly encourage him even then it is so difficult as I said earlier. When I visit these homes they dont have enough staff to do this. My dad at the moment has full seven night sits and four visits a day from carers but it is still hard I think the hardest thing is watching him slowlyu dying and getting thinner and thinner. I am a nurse and should be able to go along this journey but feel so sad it is hard as you all know.God knows how my mum feels I think she blocks it out.
    I also hear what you say about visiting at meal times etc the trouble is the homes that are any good are at least 40 minutes away with no bus. This would mean me taking mum every day which i don;t hve a problem with but then I think should I just increase the care at home but then mum doesn;t really like all these people in her home.
    Also i dread how she would cope inthe house without dads presence. It is so difficult to know what the best thing is. I am sure God will give me the answer or maybe the situation will be takenout of my hands. I tried to say to myself if dad had to go into hospital i wouldn;t have a choice. But my GP agreess that me that if dad ended up in hospital it would only be to prolong this awful journey. Nobody wants that let along dad.
    Thanks for listeneing to my rambling. I know that soon the decsion will be made I will keep you posted.
    All my love
    ANgela xxx
  20. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Angela,

    It sounds as if you are delaying the inevitable in case nature takes the decision out of your hands.
    I know how you feel. You are hanging on and hanging on, just waiting and hoping, for what, you are not sure.

    You hear what everyone is saying in the same way I hear what people say when they suggest I think about day care or short respite care. You hear what people say but do not want to make that decision as it will cause you more heartache than you already have.

    It`s not a good place to be. I do understand.

    Love xx

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