Finding it so difficult

Discussion in 'ARCHIVE FORUM: Support discussions' started by doelani, Aug 2, 2006.

  1. doelani

    doelani Registered User

    Aug 2, 2006
    19
    #1 doelani, Aug 2, 2006
    Last edited: Aug 2, 2006
    My mother started to show signs of dementia about 3 years ago, she stopped looking after herself and started accusing everyone of stealing of her. she lost all value of money and eventually ended up in hospital. I lived beside my mum until 7 years ago when I moved 30 miles away and no longer seen her every day as I ahd for the previous 35 years of my life.

    Forward to October 2005.....the nursing home she had spent 2.5 years in decided they could no longer cope with her as she was getting violent to other residents and staff, also every time my brother or myself took her out she fought and said she wanted to go her own housee and not back to nursing home. Eventually she was admitted to an EMI unit in a different nursing home. She seemed happy at first but 6 weeks after going in I had a nervous breakdown and ended up in hospital for 5 months. I never visited her for the first 8 weeks I was in hospital then started to visit her once a week. She went downhill greatly in this time, lost a lot of weight and did not reciognise me at every visit.

    She is now no longer mobile and does not know us. Grandchildren will no longer visit, I have 1 sister who will not visit , she says she cannot cope with it, she never visited her when she was well so this is just an excuse.

    My brother and I are her only visiters and we are finding it harder and harder. last week she had to go to hospital and we sat in A&E with her for 5 hours and it was heartbreaking, she had been sick and doctor wanted her checked out. She was sent in ambulance and back again. I feel so helpless, I go to see her and she hold on to my hand but shows no recognition most times, sometimes you get the odd word and a laugh.

    In the last week I have started wishing she was dead, I feel so bad about this . I love her so much but hate seeing her like this. I feel so helpless. My brother will not talk about it, he visited with me last week and was only there about 2 minutes when he wanted to leave again. I know this can last for many years, her sister has had alzihmers for about 14 years. She ahs just deteariated so much in the last 8 months, on Christmas Day she knew us and was talking about wanting to go visit her sisiter and now she does not even knwo our names.

    How am I going to get through this? I just feel I cannot watch it for years to come and do not know what to do.
     
  2. Áine

    Áine Registered User

    hi doelani

    hello doelani ...... welcome to TP. I don't know quite what to say. My dad just died and I'm not entirely together. But I wanted to welcome you, and say that one way or another I trust that you WILL get through it. It looks impossible I know ........ when dad started to be ill there were all sorts of things that I thought there was no way, no how, I would be able to cope with. If you allow yourself to be open to what's happening, and grab hold of every little bit of care and love that you are offered ...... you will get by. There will be moments of hell probably, and times of joy and times of plodding along. TP is a wonderful space of loving people who will be glad to share their experience and love to help you get by.

    hugs and best wishes

    Áine
     
  3. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya doelani,
    Welcome to TP. My mum is at a similar stage to yours - totally unable to do anything for herself. When the manager of the NH told me about residents who had been bed ridden for 5 years, I started to cry and said I couldn't stand it. I am torn, I do not want my mum to die - the final farewell- but I do not want her to live as she is.
    I visit once or twice a week, sometimes more, sometimes less - and the rest of the time I get on with my life, and feel guilty that I can do. I try not to think about mum being in the NH, on her own, without her family,because it feels wrong. At the weekend we had a family and neighbours get together, and it was decided not to bring mum home - it felt so wrong - but I went along with the decision of other family members.
    How to get through it. For me I do not think too far ahead. I have decided what time I am able to give to mum, and when I am with her I do my best to make contact - catching her eye, stoking her hair, taking her out in the wheelchair, feeding her. My mum's decline has taken many years, it is so long since she has known me - I cannot remember -I will just love her as she is, not think of the past, not think of the future, until she is nolonger. A lot of the time I feel that I have become hard and emotionless - then suddenly it hits me.
    Doelani, we can do it, we can be there for as long as it takes, but only by taking one day at a time. Talk on here as you have done, it does help you to get through the bad times - as you are amongst people who know where you are coming from.
    Take care.
    Love Helen
     
  4. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    I am so sorry to hear what has happen to your mother my mother is not at your mother stage ,sounds like living nightmare for you if you don’t mind me saying . I say what does not kill you make you stronger & that’s what you got to forces on you in doing so your find the inner courage to see this to the end with your mum & on the days you can’t go visit just don’t feel guilty is just a emotional killer.

    I also had a breakdown .but did not go to hospital as I am alone in all this I only have one brother & he has a mental illness of his own so he of no help all we can do is move forward as best as we can with support from each other on TP & supporting family friends if we have any

    yes there is an end to this when our love one dies I don’t feel guilty any more in feeling like that as so many other people on TP have open up and shared those feeling so we our not alone in this journey ((hugs)) welcome to TP
     
  5. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    Hi doelani
    I'm sorry to hear you are feeling so down.....there are days when I really struggle but I know it will pass....just be prepared to go with the flow....you will cope and you will find that inner strength.....I didn't know how strong I am until I was faced with this damned illness.....I always looked upon myself as a bit weak...Like Helen said don't look too far into the future...its too scary....just take each day as it comes...
    love
    Wendy x
     
  6. dmc

    dmc Registered User

    Mar 13, 2006
    1,157
    hi doelani

    welcome to tp
    i suppose unlike most of you i am lucky as the doctors have only given my mother a short time to live she was diagnosed in february at the moment she's still quite well consisdering the diagnosis, but i find even the time span theyve given mum is too long, to watch her suffer is one of the worst things ive ever had to endure.
    she had a heart attack two years ago and i find myself wishing they hadnt brought her back, to go through this now.
    i dont feel anymore "how am i going to get through" i just do becouse i have too, dont feel guilty becouse of your wishes i think that perhaps all of us on TP have had that feeling at some point.
    as others have said "one day at a time" its the best you can do
    keep posting it does help to share, the support and encouragement you get here will help you a lot
    take care x
     
  7. doelani

    doelani Registered User

    Aug 2, 2006
    19
    Thanks everyone, it is so good to read messages from others in the same situation. I am sorry I said I wish mum was dead but I sometimes feel that. I know that is so selfish and feel so guilty about it. I would just love to go see her and be bale to even take her for a walk but cannot as she stiffens up when they try toput her in a wheelchair. Last week she had to be broght back form hospital on a stretcher as they were unwilling to try her in a wheelchair again as first time she almost slid out of it.

    I am going to see her today and do not know what to expect, every day is so different, I have to travel the 50 mile round trip to see her alone, which I hate , because my teenage kids refuse to see her. I know they cannot cope seeing their nanny as she is and it is probally better like that. Last time they see her she was talking and walking.

    when I get back I am going to read through somemore of the old mesages as I tried last night and had so many tears I had to stop. I wish I had found this board years ago and it may have prepared me
    Thanks again
     
  8. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Hello doelani

    Don't feel guilty about wishing your Mum free of this horrible disease, I feel the same way from time to time too, I wish Mum was back with Dad again, he died suddenly almost 2 years ago, then their circle will be complete again.

    My Mum can't communicate in words any more and sometimes looks so lost and vulnerable, she has suffered for about 6 years now, the last year has seen a rapid decline. Her weight loss is dramatic and she stops eating for days at a time with increasing frequency, although she is still mobile, if a little unsteady on her little legs.

    There is no definite pattern to the disease and no timescale, which makes living with it so much more cruel.

    The days she smiles reaches out her hand and looks directly at me, she connects again and they are the wonderful days, the others are very hard to cope with.

    I have days when the reality overwhelms me and I cry for the Mum and Dad I have lost, but most of the time I jog along pretending everything is fine.

    Like Helen and dmc, I don't look too far forward, just take it step by step.

    Thinking of you

    Kathleen
     
  9. Áine

    Áine Registered User

    Hi doelani ........ please don't feel sorry for saying that. I wouldn't mind betting that most of us if we're honest have felt that at times. Think again about what you're saying and you'll hopefully realise that the wish comes from love much more than selfishness. You wish her dead because she's suffering and because witnessing that suffering is causing you a lot of pain. If you didn't love her you wouldn't be in so much pain with it, and wouldn't wish for an end to the pain for both of you.

    Hope your trip was OK

    hugs

    Áine
     
  10. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,418
    As other have said, I doubt that there are many of us who haven't at least thought the same thing. I am absolutely certain that my Mother would hate the way she is now (in fact, she sometimes says that), and when she does finally die, I know it will be a release. In a way, dementia is like a long goodbye - we'll all be sad when our loved one dies, but in many ways, they've already gone. The frightened depressed child I visit isn't my mother - her body yes, but her spirit, her essential nature, went with the strokes. As her only child, it is my responsibility to ensure she's safe, fed, taken care of and treated with dignity, but I have to recognise that I can't fix her (more's the pity). It's not selfish to wish that the person in question wasn't in this situation, and it's only realistic to realise that with dementia, the only way out will be death. If there were alternatives it would be different, but there aren't.

    Take care

    Jennifer
     
  11. doelani

    doelani Registered User

    Aug 2, 2006
    19
    thanks everyone, went to see mum on thursday and just arrived in time for lunch so was able to feed her. such a small thing made me feel I was doing something. She was very alert for the first time in week. Doctor had put her on medication for her jerking and it had almost completly sedated her. She has been taken off it again and seems a lot brighter. She kept asking me where I was going, which is the most she has said in weeks. Gave me a little hope.

    thanks again
     
  12. daughter

    daughter Registered User

    Mar 16, 2005
    824
    Hi doelani,

    I'm glad you had a relatively good visit and your Mum seemed brighter. It makes all the difference and I often find, when I'm at my lowest, one of these good visits seem to come along to knock me off my feet!
    It almost seems worse, in a strange way, when we do get these because it is such a stark reminder of how few those times are now.

    There are a lot of us on TP with a parent at this stage of seeming to be nowhere, and yet still somewhere. I read your story and related to so many aspects - the emotional pain, the helplessness, the guilt, the weariness of constantly having to never quite say goodbye and the difficulty of visiting. I used to be able to visit Dad quite willingly, when I felt I was actually making things a little better for him (and for my Mum when she was visiting too), but now it seems we have fewer and fewer good visits and I question what on earth is my role in this? I feel like I am no longer a "proper" daughter, I can't make Dad happy, nor tend to his needs, nor can I ease my Mum's pain at seeing her husband like this. Even my 16-year-old son said that it might have been better for his Nan if Dad had died because at least she would be able to get on with her life. It is so hard for them too, isn't it? :(

    I can understand your brother's 2 minute thing - I can tell almost straight away if the visit is going to be one of those "bad" ones. I have cut my visits down to once a week, my sister visits even less, and Mum goes every other day. I think it is best to try to find your own limit rather than to push yourself too hard to do the right thing (I still haven't found what the "right" thing actually is! :eek: ) And yet, when it has been one of those good visits I find I am telling myself that perhaps I could visit more often... :confused:

    Please do not think you are alone in the wish for some peace for all concerned and, of course that involves the almost unspeakable wish of the death of our parent. I do also wonder how we'll get through this sometimes, but I know that we will find the strength from somewhere.

    P.S. Thank goodness for TP, you may have only just found it but I know that it will help you now.
     
  13. Grandaughter 1

    Grandaughter 1 Registered User

    Jan 17, 2006
    141
    Hampshire
    I can understand the rollercoaster of emotions you are going through as can a lot people on this site I suspect.

    I go through periods of wishing my Grandad would just slip away as I know he wouldn't want the sort of life he has at the moment. We are just going through the stage of thinking about care homes so I know things will get much worse.

    It was nice to hear you had a good lunch-time visit with your Mum. Those sort of moments are precious.

    Take care

    Louise x
     
  14. Libby

    Libby Registered User

    May 20, 2006
    625
    North East
    Hi doelani

    My mum's not at your mums stage yet, but it's still hard to see her as she is - no memory of her life with dad (56 years they were together), forgetting that Dad's gone, then remembering again, no pride in how she looks, constantly sad, constantly crying - I would say that I wish at least once a week that she could find dad so they could be together again.

    I know she would have hated to know that this was how she would end her life - freinds visiting less and less, family visiting less and less - it's heartbreaking.

    Libs
     
  15. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    Glad they let you feed her.

    In both the respite home and in the last hospital (where my mother died) they sent me out at mealtimes, some of them actually have notices specifying no visitors at mealtimes.

    But my mother never reached that stage, I thought she still had a life worth living.

    Lila



     
  16. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Hi everyone, well Lionel attempted to feed himself tonight.

    Smoked salmon and scrambled eggs. Almost a disaster, but tomorrow could be worse.

    With us, some days are much better than others, indeed some minutes are better.......... thus is the nature of this insidious desease.

    Norman's day by day" really sums things up.
     
  17. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    ah, but always hope that it might be just a bit better. When that happens it is, for me, generally a surprise though!

    All the best
     

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