1. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    Just a little update.

    We were told to prepare ourselves at the turn of the year as Mother's frailty is increasingly exponentially. By the start of last week she was starting to pouch food and it was difficult to persuade her to eat anything. We thoughts that within a couple of weeks it would all be over.

    Last night I went in and she ate well again, albeit slowly and she took her pills. The TIA's/mini strokes have caused a great deal of damage and are happening every couple of days. She spends much of her time hallucinating, she sees Dad, her Mum and Aunt and chats to them. She can barely speak to us but to the "Angels" she has conversations, sometimes comprehensible and sometimes her speech is just too slurred.

    I feel like I am waiting for a bomb to go off. Her prognosis could range from a day to many months. I dread the thought of the latter as I currently live from day to day, waiting for the phone to go and hoping it does yet also praying that it does not.

    Mostly she appears content. I wish I knew the length of the string..planning holidays and breaks is a nightmare, as it is when my husband is away, but life goes on with this shadow in the background. I keep hoping that soon she just falls asleep......

  2. SusanB

    SusanB Registered User

    Jan 15, 2008
    Hello, Mameeskyke

    You have very clearly articulated what I have been thinking for several months - just waiting for "the phone call". It's horrible isn't it, although your situation is much worse than mine.

    My mum has atrial fibriliation and I guess we're all aware as a family that she could have a stroke or a heart attack at any time. Her VAD is as a result of this.

    You must be on a knife edge and my heart goes out to you, it really does, and I totally concur with your sentiment that you don't want things to drag on and on. You do however imply that your Mum seems quite contented, which I guess is something to be thankful for.

    I hope that you are still trying to lead your own life at the same time that this is going on?

    Hmmnnn...easier said than done I think
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    It`s an impossibility.
    When you know it could happen `at any time` how on earth can you live a normal life. I don`t think anyone can understand the strain of waiting for the phone to ring, unless they`ve actually been there.

    I don`t know where the strength comes from, but you seem to find it from somewhere.

    Love and sympathy to everyone who`s living on such a knife edge.
  4. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Mameeskye, you're living with intolerable tension,and have been living with it for almost two months.

    Of course you want it to be over. Once there is no quality of life or hope for improvement, it's not prolonging life,but prolonging death. Noneof us would want that ......... and yet the thought of letting go is equally painful.

    I hope there will soon be peace for you and your mum.

    Love and hugs,
  5. clarethebear

    clarethebear Registered User

    Oct 16, 2007
    manchester, uk
    Hi Mameeskye

    Waiting for the phone to ring, I remember that so well, it's not a nice place to be. My thoughts are with you and your family and I hope that when the time is right your mothers passing is a peaceful one.

    Take Care
  6. Louise.D

    Louise.D Registered User

    Apr 13, 2007
    I'm so sorry. It's such a tough time for you and your family. My thoughts are with you.
  7. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    Hi Everyone and thank you for your support.

    Granny G you are right about living on a knife edge. This is the second time for me as I lived this way for a few weeks when my Dad was dying.

    Susan B, like you I have known for long enough that a massive stroke could carry mum away since the disease was diagnosed. SInce then though it has been the insidious TIAs that have caused the damage.

    For some strange reason this time is much easier eventhough it is going on longer. Maybe because I lost my Mum years ago, maybe because I know after Dad's death that you do get through it and can be happy again, maybe because I have children now and can clearly see "The circle of life"

    Would it have been easier though had mum dies years ago during emergency surgery or from a stroke. I don't know.

    If anyone had told me a few years back that I would be looking forward to my Mum's death as a blessing and a release I would have thought that they were completely mad. But then the last few years have seen very painful grief, anger and finally acceptance.

    I just try to keep everything fitted in, family, Mum etc. with little "me" time and concentrate on the here and now. We have booked our holidays and are off camping in July, I'm taking my sons away for a few days at Easter. Yes I will be far away from Mum (if she is still around then) but the boys have the right to a life too that is not overshadowed any more than can be helped. And following my fears at Christmas I know that I will enjoy it with them and that I can. I cannot regain lost time so I try to share it as best I can.

    ((((((hugs)))))))))) and my sympathies to everyone else at the stage of this cursed disease.


  8. Kate P

    Kate P Registered User

    Jul 6, 2007

    I feel for you so much at this time and am glad you can still find comfort in your wonderful boys.

    Strangely, the first thought I had on reading your post was how nice your mum is talking to angels and her loved ones rather than being plagued by pain and nightmarish hallucinations. That must bring her some comfort.

    I understand your thoughts on wanting your mum's pain to be over so she can be at peace. It is an inconceivable thought pre-dementia but having experienced all you have with your mum it is so understandable.

    I hope that this time continues to be peaceful for your mum and I'm parying hard for you too.

    Take care of yourself and well done for keeping your boy's interests at the fore of your mind as well.
  9. Nell

    Nell Registered User

    Aug 9, 2005
    Dear Mameeskye,

    Please look after yourself too. The waiting is agonising and yet, we dread the phone call to say the waiting is over. Such conflicting emotions. My heart goes out to you.
  10. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    Well, another week passes and on yesterday's visit Mum was ravenous and eating everything, although on Friday she had been really low. They HAd even smothered her in blankets yesterday and taken her for a wee walk outside.

    Her Angels were not there and she occasionally answered a yes/no question. You are right Kate, it really comforts me to know that she is not alone!

    One of the cleaners asked me if she still knew me. So I asked her, not really expecting a reply and she responded with a determined "yes".

    She is just so so frail and I know that this could go on for long enough. Thank goodness I have a great husband and lovely sons supporting me through this.

    I fear that I will still be writing about this in a year such is her determination to continue in this life. But so long as she is happy........then may it be a long one!

  11. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Mameeskye, I don't really know what to say.

    Rejoice that your mum is better, eating, recognising you?

    Commiserate that your agony is going to go on, for goodness knows how long?

    I guess you don't know yourself how you feel, and your emotions swing from one extreme to the other.

    I guess you feel pretty much like me. Though John is by no means frail, he can't seem to fight off these infections. Am I being selfish in refusing palliative care? Is there any possibility that he'll recover once the weather improves?

    It's a hellish situation, isn't it.

    Much sympathy, I wish you everything you wish yourself.

  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Mameeskye,

    Just to say I`m thinking of you during this very difficult time and hope you continue to have the strength to bear the `not knowing`, wwhich is the hardest part of all.

    Love xx
  13. debby13

    debby13 Registered User

    Oct 15, 2007
    Hi Mameeskye

    Poor poor you, it is over 2 months since Dad passed away but i remember the waiting and sadly the longing that it would be over as if it was yesterday. It is a terrible thing to watch someone suffer like that and I think as someone has said already unless you have been through it the pains is indescribable. I know what an incredibly strong and upbeat person you are and I am so glad that you are planning some things with your boys. It is difficult but you have to live as well as does your family so you are doing to the right thing and have done everything you can to help your Mum. It is lovely to hear that she is talking to angels and gives me hope....!

    Love and hugs

    Debby xx
  14. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    Another week passes

    Just another update..hope no one minds

    You are right Hazel about the conflicting emotions. Whilst I want it over it means saying goodbye permanantly, although My Mum has been gone a long long time. And Sylvia I do not know where the strength is coming from but I am finding it. I finally feel that I am a grown up. I found the words to the song "Stronger" on Lee Mead's album very uplifting. Yes Debby it does comfort me that she has her angels. They sometimes annoy her but they are with her.

    Well, the Angels were back this week. In the past a common theme has been the "I don't want to go" however as she lay in her bed after tea on Monday - (having eaten haggis neeps tatties, creme brulee and a sponge cake!! - she is finally getting vengeance after all her years of struggling with her weight as I could eat anything and remain beanpole slim when I was younger!!!!:D) - She turned to me and said "I want to go".

    I told her that this was OK and though I would miss her what I wanted most was for her to be happy. At this point I felt a tear slide down my face. I asked if there was anything she wanted to tell me. She chatted with her Angels for a while then mumbled something about burble burble ring. I then said "Your engagement ring?" She gave a determined "yes", followed by "Where is it?"

    This shook me a little as it had fallen off her hand a few weeks back as she had lost so much weight and the staff had given it to me as they did not want it lost. She did not appear to be missing it so I took it home. I told her that I had it and she said OK then went back to talking to her angels.

    A wee while later, although I was not crying, she looked at me and said"dont cry". I replied that I wouldn't (Fighting back tears). Then tolde her that I had been lucky to have a mum like her and that she had taught me how to be the brilliant loving Mum to my sons. She was holding my hand and squeezed so hard at this point that it hurt.

    She then returned to her Angels and was chatting to them as I left a little later as she was chatting/dozing.

    It was an emotional rollercoaster yet I came out feeling calmer than I had done in months.

    I do not know how long she will continue but at times she seems so clear at the moment yet so far away. I take each day at a time.

    For me it has also been a good week diet wise..I've now lost 9lbs and signed up for Race for Life in Memory of Dad. Such a strange juxtaposition of life and Death. One thing though that this disease has given me, I feel, is the freedom to talk to Mum at the end of her life in a way that I never felt comfortable with when my Dad was dying. I think though that this time I have reached the acceptance part before Mum has passed which is a blessing.

    ((hugs)) to you all

  15. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    Waht a beautiful post! It brought tears to my eyes but in a good way. It does sound like your mother has decided the time is coming. I'm happy for you that your conversations were so loving.

    Keep the updates coming. We really want to know.
  16. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Mameeskye,

    Your post was so moving. If you don`t have another conversation with your mother you will regret nothing.

    It`s as if everything that needs to be said has been said. However emotional it made you feel, it was an experience denied to many.

    I hope you draw great comfort from it in the days/weeks/months to come.

    Love xx
  17. Amanda1954

    Amanda1954 Registered User

    Nov 5, 2006
    Mameeskye, My heart goes out to you. It must be the most difficult of times for you, but thank God that you have your husband and sons supporting you, and that you have had this wonderful peaceful visit with your mum. The way you described it was extraordinary and I felt I was there with you.

    If you do get to go away then I hope you have a good relaxing time.

    I wish you all the best,
    with love
    Amanda XX
  18. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Dear Mameeskye

    Your post was so beautiful, it made me cry.

    Putting myself in your mum's place, I would be so proud to have someone speak to me as you spoke to your mum.

    I'm sure you'll have some tearful moments as you remember that conversation, but also be proud that you had it.

    You are a daughter to be proud of.

    Love and hugs,
  19. barbara h

    barbara h Registered User

    Feb 15, 2008
    county durham
    We find ourselves in the difficult situation as well. The doctor told us on friday that mam is at the advanced stage of dementia and with the rapid deteriation she has experienced so far we should do a end of life care plan. She keeps having mini strokes and yes you are right the thought of going weeks or even months waiting for the phone call is terrible and it is hard to plan ahead and get on with your life.

    Amazing where everyone gets the strength from to see this awful illness through.

  20. AJay

    AJay Registered User

    Aug 21, 2007
    Hi Mameeskye

    What a beautiful post, I'm sitting here with a huge lump in my throat fighting back tears. I wish I could have had the opportunity to say similar words to my Mum before she left us. I truly hope I can for my Dad.

    Much love and hugs, you're a very inspirational lady with so much strength.

    AJay xxx

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