The guilt is Tearing me apart.

Discussion in 'ARCHIVE FORUM: Support discussions' started by jude1950, Sep 15, 2007.

  1. jude1950

    jude1950 Registered User

    Mar 23, 2006
    182
    Lincolnshire
    Hi To all my TP friends. To update you on how Jim is getting on in the NH. He is very unsettled and each time I go see him he says he wants to come home.
    After a while he calms down and we have a general chat about things ...he thinks he is there as some kind of punishment...That is not the case he also promises that he will let me rest and not be so demanding on me ...he never left my side when he was at home and refused to go to the day centre or give me any respite at all what do I do ...I love him dearly but my health suffered so much when I was his carer 24/7.
    He was also extremely jealous of my children and would complain if they rang me or If I wanted to see them ..I very rarely saw my grandchildren as he would behave so badly if they came to visit.
    I am so torn I would have another go at caring for him at home but it would make it so my life was over He would expect me to spend all my time on him and I know I would lose some contact with my children...Jim does not have a close relationship with his own children. so does not understand the bond I have with mine.
    I feel as though the life has been drained out of me and if it were not for the distress that it would cause my children I would consider ending my life.
    Jim presents very well and I feel that the SS and mental health team are more concerned about him than me and I feel as though I am expected to give up any form of life of my own.
    Sorry it is such a depressing post...there is a case meeting on the 1st October and I am dreading it .

    Judith
     
  2. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    Dear Judith

    Although I have been depressed in the past, I have never been so depressed that I felt like taking my own life, probably because it is a legacy that I think is an awful one to leave ones children. They may be adult, but they still need you, and you know this. You know in your heart of heart that no matter how much you love Jim, no matter what hs protestations to the contrary, if you took him out of the home you would swiftly be on your knees. If being placed in a nursing home is punishment, it's punishment exacted by his disease, not you. You also know that he is simply not capable of understanding that now, which makes it so hard for you. I wish I could promise you that he will settle, and I really think he will, but there are no certainties.

    All I can really say to you, no matter how guilty you feel, is that you do have a right to live the best possible life you can, even if it's not with him at your side. It's not his fault that he is ill, but it's definitely not yours or your children either. Yes, you could pull him out of the home, possibly destroying your own health and your relationship with your children and grandchildren and would it change his illness in any important respect? I don't think so. In fact even at home he may be seriously disatisfied with his lot. As it stands, he's focussing all his remaining energy in getting out of the home. If he was out, what would he focus on next? Separating you from your family? Who knows. All you do know is that, no matter how he feels, you couldn't manage it.

    I hesitate to suggest this, but would it be possible for you to avoid visiting for a while? I really think you need to recharge your batteries in order to cope with the experience of visting someone who is begging you to do something you simply can't do.

    And Judith, have you spoken to your doctor about the way you feel? Medication may or may not be the answer: I suspect not because you have a real and valid reason for your depression. But someone in real life to talk to - yes I think that could be very worthwhile. Someone who could help you to understand emotionally what you know intellectually: that this disease is not anyone's fault and while placing Jim in a home may make you feel impossibly sad, you simply couldn't go on the way you were.

    Love
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,884
    Kent
    Dear Judith,

    The decision has been made, your husband is in a home and the reason he is there is because his behaviour was unmanageable.

    Please do not consider bringing him home. With the best will in the world you will not make it. And if you do bring him home and he has to return to the NH, it will be worse than ever.

    He will be unable to keep his promises because he will forget what he promised.

    I can see you feel guilty, but you say he settles after a while when you visit, so it doesn`t sound as if he is as unhappy as he makes you feel.

    Please do not consider suicide. It would be a double tragedy. Have you considered phoning the Samaritans, I`m sure they would help you when you are at your lowest.
    The number is Samaritans 08457 90 90 90 Keep this number with you just in case, please.

    You have been through so much and are still suffering, but as you say, your children would be heartbroken if they lost you.

    Please keep posting on TP for support. There is always someone here.

    Love xx
     
  4. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    945
    leigh lancashire
    jennifer and sylvia,your posts were very well presented.To give the sound advice you give often amazes me.love elainex
     
  5. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
    Hear, hear! Well said Elaine! Both Jennifer and Sylvia have given such wise and caring advice.

    Dear Judith, I can only add that it might be useful to print out this thread and take it to the meeting on 1st October. . . . ???

    You might feel a bit "funny" about doing that, but often it is easier to put your thoughts "on paper" (as it were) than in spoken words, especially in a meeting.

    I think those involved in the meeting need (and indeed, deserve) to know how desperately you are affected by the decision to have Jim in care. It is quite literally tearing you apart.

    Although it no doubt feels as if the mental health team and the SS are more concerned about Jim than you, it may be because YOU present very well too!! ;)
    In other words, they may have no understanding of just how much strain you are under and how near you are to reaching breaking point.

    As professionals, I feel they could do more to help you, but first they must be made aware of how deep your need is, just at the moment.

    If I sound like I'm "preaching" to you, I do apologise. Your post has stirred me deeply and I feel such compassion for you. I know others on TP do as well, so please visit us when things are bad. We can at least give you some virtual {{{HUGS}}}!
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,884
    Kent
    Well said Nell,
    Printing this thread would show the services just what you are going through Judith.
    If you tried to tell them you would probably burst into tears.
     
  7. paris07

    paris07 Registered User

    Jul 11, 2007
    74
    australia
    Hi Judith,

    I just wanted to say I think I understand how you feel, I have my mum living with me still and she is very demanding of my time and does not like anyone coming to the house especially our kids and granddaughter to a point where she is verbally rude to them and it makes everyone very upset . My mum hated the 2 weeks respite she had in a home and told me every time I visited , until the nurses told me stay away for a while , she has told everyone she is not going back at all.

    I also have been so far down in life I did not know which way to go, all over mum,s demands on me. I always thought of my kids and that pulled me through rough times. I have also talked to several psychologists and they say I have to keep my own health up to care for my Mum.
    I agree with other posts and think you should not consider home care again You need to think of your own health first.

    thinking of you
    Paris07
     
  8. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    Well you know Paris, those psychologists are correct: you can't continue to care for your mother if your own health goes down the tubes. Might I suggest something? Next time you have respite (and yes you WILL have respite no matter how much your mother dislikes it: you need it if you're to continue caring) don't visit. Yes it's tough, and yes you'll feel guilty but you need that time to recharge your batteries. I can well imagine that if you're visiting while you have respite you're spending some time steeling yourself for the visit and then some time decompressing from the visit. That time should be for you (and the rest of the family).

    Love
     
  9. allylee

    allylee Registered User

    Feb 28, 2005
    180
    west mids
    Dear Judith,

    I made the decision to put mum into full time care in March because after three years of coping at home I knew I couldnt do it any longer.

    My mental and physical health was suffering, my son neglected, my ability to do my job affected also (my marriage was the first casualty).

    Mum was also very unhappy for a while and like Jim would bargain with me to let her come home.

    Like you Judith I did consider it , because after a few weeks of mum being in the NH ,my stress levels had reduced, my energy returned and my rose coloured specs were well and truly on. Had things really been that bad ?

    Fortunately the answer was yes.

    Please think about this very hard Judith, you deserve a life too, you deserve to come first and your health is as important as Jims.

    Jim is getting the best care, now its your time.

    Good luck love
    Ally xx

    I think its an excellent suggestion by Nell to print this post and take it with you to the case conference.
     
  10. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #10 Margarita, Sep 16, 2007
    Last edited: Sep 16, 2007
    Oh no that dread feeling of wanting to end it all my mother was just like that

    when I was abroad alone with my mother my mum would of isolated me if I had let her , I now know its because of the disease but it does not help when your living in it.

    I had to be so strong emotionally , it was hard because it use to come in waves and it does drain you , mixing with friends , talking with friends crying it out help me to take that step to bring mum back to the UK , may sound hard but she just had to get use to living with my kids or it would of been care home . you done the right thing . now you just have to learn to live with it your emotion I mean . letting go of the guilty so you can more on , or other wise it does pull you down , keep breathing in deep when your feeling like that and you won't feel like your drowning , your swim and your get stronger
     
  11. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Dear Judith

    How I empathise with you. My husband John is at present in hospital recovering from a UTI. Sadly, although the infection is clearing, he has lost much of his mobility, and I do not know how I will be able to cope with him at home.

    The guilt is huge. I love John so much, and he is totally dependent on me. He is unhappy in hospital, and wants to come home. At present I can tell him he will come home as soon as he is well enough. I dread the day when that becomes a lie.

    But Judith we both have to accept that, however much we love them, however much we want to care for them, the time comes for most of us when they need professional care.

    It's so hard, I know. I'm trying to convince myself as much as you.

    Try to stay strong, and know that I am in the same position, and am feeling the same. Please keep in touch.

    Love and hugs,
     
  12. jude1950

    jude1950 Registered User

    Mar 23, 2006
    182
    Lincolnshire
    Thankyou all my lovely TP family....I do not wish to single anyone of you out as being more helpful than any other the support you gine me individually and jointly is very very helpful. Jennifer you do make some very good points and have helped me get myself back on track so to speak...Sylvia and Hazel I know your situations are very similar to my own and I thank you both for taking the time to respond to my cry for help.
    Nell I have taken your advice and printed this thread I may not even go to the case meeting I will perhaps let my daughter go on my behalf she can show them this thread and tell them how all our lives have been shattered by this disease. I also think you are right about me presenting OK. I am quite a strong person usually and have been involved in the local Alzheimer's society being a committee member as a carers representative, I wish to continue my work for the group but if that is sending out the message that I can cope with being a 24hour carer I will have to step away from the group.
    Margarita, Ally & Paris...thankyou also for your kindness I know caring for a husband and caring for a parent may seem different but it isn't really we are all subject to the same pressures of this vile disease.
    I am next due to see Jim on Monday morning but my daughter has said she will go to see him instead and will also have a word with the manager there and tell the home of my health issues.
    Thank you all once again.

    judith
     
  13. Taffy

    Taffy Registered User

    Apr 15, 2007
    1,314
    Dear Judith,
    I hope that all goes well with the meeting. You must think of your own health here and Jim will probably continue to ask to come home for sometime yet. I really can't see that his previous behaviour would change and the impact will only fall on you. I know how easy it is to get in the depths of despair just remember as Jim has rights to be loved and cared for, so do you. Your life is as important as the next person, and as sad, as dementia is, the time does come when professional care is needed. I hope that the SS and health team recognise your needs are as important also, fingers crossed that all goes the way you wish. Best Wishes. Taffy.
     
  14. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,884
    Kent
    Dear Judith.

    What a lovely daughter you have. It will be easier for her to be objective about Jim, and so hopefully she`ll be able to get the message over about how deeply you are being affected.

    It`s much easier to speak for someone else than to speak for yourself, in situations like this.

    Love xx
     
  15. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
    Dear Judith,

    I am just off to visit my husband who is on a long stay mental health ward. Oh, how your experiences mirror my own. As I read your post almost every word I could have written myself! I also regularly reach the depths of despair (many times a day at the moment). The thing which stops me from seriously considering suicide is that there would be no one to visit him if I ever did this. So, it is a terrible situation which you and I are in.

    I am now trying to pick myself up and get on with things. I have made it my aim to get my husband off this ward and into where your husband currently is. I have just had a review (last week) when the consultant said that I could not take him out of the hospital grounds and that he must stay where he is as his behaviour is still causing worries for the staff. He mistakes other patients for myself and tries to hug them!! I do not think this is sufficient grounds to warrent his detention in the ward.

    I went to visit the home where he was in respite for a short time and they have said they are willing to take him as he 'is a lovely man and we can handle him with no trouble'. It is an EMI secure unit. So, does anyone think that asking to see the Consultant in two weeks time is too early? My son has said he can come with me on the 28th September. He is quite unafraid of firing bullets for me.

    What do you think? Is it too early to ask for another review? Ken is going rapidly downhill as I think he hates it so much where he is that he has now given up and told me he wants to die.

    xxTinaT
     
  16. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,884
    Kent
    Tina, I could weep, reading that. How can that be grounds for keeping him in a mental health ward.

    If you have found a home that has a secure EMI unit and is willing to take your husband, I would certainly ask for the appointment with the consultant to be brought forwards. Especially as he has stayed there before with no ill effects.

    I`m glad you have a good son to fight your corner. It`s much easier with support.

    Please book to see the consultant with your son on 28th. At least you will have some hope.

    I hope with all my heart it goes well.

    Love xx
     
  17. lizzie2596

    lizzie2596 Registered User

    Jul 3, 2007
    91
    Hi Tina

    I would definitely arrange another meeting with the consultant, especially if your son can give you some back-up. If you have an EMI home willing to take your husband then the consultant needs to know that there are other options available for your husband's future care. The worst that can happen is that he will say 'not yet', in which case you can keep your husband on the CH's waiting list.

    If nothing else that will give you something to plan for and some light at the end of the tunnel.

    Liz x
     
  18. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    Tina, I would agree with Sylvia and Liz. Make a new appointment and take that son of yours with you. On the face of it, this seems a ridiculous reason to keep him on the ward, particularly if you have an EMI bed lined up for him.

    Love
     
  19. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
    Think I had better start a new thread rather than 'hijack' someone else's as I have other things I would like opinions on xxxTinaT
     
  20. jude1950

    jude1950 Registered User

    Mar 23, 2006
    182
    Lincolnshire
    UPDATE.

    Just to let you all know I survived the weekend!! I am sorry if my posts upset anyone this really is a roller coaster ride. My daughter went to the NH today and arrived just in time to see Jim being carted off to A&E in an ambulance apparently he stumbled whilst out walking and hit the ground full force onto his face he has a gash on his forehead and down his nose apparently it is quite deep and he has stitches across his forehead and two down the side of his nose.
    He is now back at the NH a little shaken but otherwise OK. They think what happened is that he was having difficulty co ordinating his movement he stumbled again when walking to the car after being in A&E.
    My Daughter spoke with the Manager there and told her how distressed I* had been this weekend.They were very concerned and said that Jim does need 24 hour care and thought that I was putting a strain on myself by visiting so much . they recommend that I visit perhaps once a week or less until he settles in a bit more ,they have offered to ring my daughter with progeress reports and have also taken her name as first point of contact should it be necessary to get in touch with me.
    The SS cordinator is visiting Jim tomorrow and the care manager has said she will make sure he knows just how much care and supervision Jim needs.
    I feel a lot happier now. Although I still have the guilt monster with me I am relieved that others realise how much care Jim needs.

    Love to all
    Judith
     

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