How do you cope knowing that...

Discussion in 'I care for a person with dementia' started by seasong, Feb 27, 2015.

  1. seasong

    seasong Registered User

    Apr 13, 2014
    South East England
    Hello All,

    Since my mum's diagnosis last year in April...and like so many of you...I am on this terrible and full of anguish journey. I am watching her deteriorate daily - her consultant says she is unlucky because she progresses very rapidly...and is now (10 months on from a very early AD diagnosis that no one could spot) a moderate to severe AD patient. The other day an acquaintance visited and said that she hopes her children never get to see her in the state my mum is in! I felt terrible to hear it...but she did not mean it just came out like this...People make insensitive comments all the time, and do not think of the impact of what they say on others.

    How do you cope knowing your mum is no longer part of your life, does not know what is going on in your mind and does not "get you" any more when you talk to her (but you still talk to her and hope she will give you some sound advice as she used to...), will never support you again in anything you do, will not be part of your joys or sorrows? How do you cope having her around when she is no longer there mentally, watching her be so confused and lost, watching her trying to understand what is happening to her but unable to express any of it? How do you cope knowing that there is nothing you can do to really help her? And although I know this will get worse still...and hope she will not suffer much more until her journey is over...I still do not want to lose her and cannot prepare myself for the day she will not be here physically. Am I selfish or stupid thinking this way...not being able to come to terms with what is happening? How can anyone come to terms with watching their loved one suffer so much, lose their dignity, have others laugh at them or pity them, become someone they would be embarrassed to know before this terrible disease hit them so hard?

    I just wanted to share some of my thoughts I know they will resonate with so many of you. This is such a lonely journey...and no matter how much I try, I cannot accept what is happening to my mum. I know it is real...yet it feels like a never ending nightmare...I wake up hoping it is not true...and it gets worse every day.

    Apologies if this is too wishes to you all for strength and courage.
  2. daisydi

    daisydi Registered User

    Feb 25, 2015
    |I'm going through exactly the same thoughts and feelings. I go into the care home and am subconsciously expecting her to be better and when she is not I am so disappointed. I suppose it will take time to come to terms with this disease which is so difficult to understand. Its good to share these thoughts as friends who dont understand just dont understand!
  3. CJinUSA

    CJinUSA Registered User

    Jan 20, 2014
    eastern USA
    Hello. Most days I am grateful my mother is still with us (she lives with us) and I am able to take care of her and know her needs are being met in the best possible way for her. She knows I am her daughter, but she doesn't really know what that means in terms of her relationship with me. She needs me. I guess that is how I cope. I no longer need to think of her as my mother; *that* woman left me long, long ago. I need her to know I am her caregiver and will always be here for her.

    I think my sisters have finally gotten past the feelings you are experiencing. I think the difference in our response is that I have seen this day after day after day - she has been with us since 2008, diagnosis in 2009 - and my sisters don't see her very often. They now seem no longer to want her to be their mother, though they still seem upset when she doesn't remember who their children are. Sometimes they seem insensitive about her - indeed, as if they are waiting for her to die - and that is upsetting to me, though I would never tell them that.

    Everyone copes in the best way they know how. I hope you reach a place where you can accept the situation and just love *your*self for knowing that you are caring for your parent in the best way you know how, by being there.
  4. nippy1

    nippy1 Registered User

    Feb 2, 2009
    I have been going through this for the past ten years and it has been an awful journey. My mum is now at end of life and it is so difficult and sad to come to terms with this terrible condition. Mum is fixed in the foetal position and has been for sometime now, we are struggling together, and I am constantly upset as I feel so helpless and can only hope that she is not in discomfort. i feel for everyone who has to witness their love ones go through this and hope that some comfort can be had from sharing this together. Xx
  5. edwardbs

    edwardbs Registered User

    Jul 30, 2014
    Lichfield Staffs
    I have dementia and I dont understand why your mother is lucky to be getting worse very quickly.
    If it confused you , dont be surprised.
    You will feel that your mother should be your mother but somehow this alien is in her body.
    You feel you should not put her in a home but also that is the best place for her. You feel so guilty but have done the best in a situation where you can never win.
    You cope because you have to. There is no answer just keep talking.
    It does not matter if you messages are depressing, where else can you talk about how you really feel?
    Doctors tend not to think about what they are saying.
    Keep talking. Keep going you can cope with far more thaan you expect.
    Accept as much help as you can get.
    Dont be to proud to look for help.
    We will always listen here even if it is the same thing again.

  6. Quilty

    Quilty Registered User

    Aug 28, 2014
    Who knows the answer

    Hello Seasong, never worry about depressing us. Life has kicked us all in the teeth several times when dealing with dementia. How to cope? Thats one of lifes big questions. I dont believe anyone really can answer that for you. Each person copes in their own way. Here, most people cope by just battling on each day, knowing they are doing the best they can, My dear departed daddy always said no-one can expect more than your best. Some days my best is not very good, but we fight on.

    For me, this fight is about walking along with Mum to the end of her life. I hope I make it better and easier to bear. Each day I say goodbye a tiny bit as she slowly leaves me. I dont know how the end will feel so I just focus on each day and on the journey. when I look back I will know I was there. Its the best I can do.

    Be kind to yourself. Live in the moment. Worry about the strength for tomorrow when it comes. Keep talking here as it helps so much. You are not alone. Look either side - we are all walking together.
  7. Mouse2014

    Mouse2014 Registered User

    Mar 9, 2014
    hugs for you and your Mum.

    I live miles away from my Mum and have spent 7 years from an early diagnosis to now just seeing a moderate decline and it's heartbreaking,

    I echo what's been said above, one day at a time, savour every moment with the Mum you love because these memories will be all you have of her,,,

    Know she loves you and take care of yourself...

    It's horrible to see your Mum disappear,,,, xxxxxxxxxxx
  8. Dustycat

    Dustycat Registered User

    Jul 14, 2014
    North East
    It's so hard. My mum didn't know who I was for the last 14 months of her life. Someone said to me not to grieve for what I had lost but to celebrate what I still had. I tried to make every moment spent with her special and I was grateful for the time we had as she died quite suddenly. I'm now going through the same thing with my Dad. Take care. Xx
  9. velocity

    velocity Registered User

    Feb 18, 2013
    North Notts
    I also feel this way, So emotional and not knowing which emotion is going to surface so so sad
  10. Bod

    Bod Registered User

    Aug 30, 2013
    How do you cope..

    Laugh or cry.

    crying does no good, gives you red eyes, and running nose.

    Laughing, the whole world smiles with you.

  11. velocity

    velocity Registered User

    Feb 18, 2013
    North Notts
    Sometimes I don't feel like smiling, but that for me is ok.
  12. jpk

    jpk Registered User

    Jun 10, 2014
    warrington, cheshire
    I have been through all of the emotions that you mentioned. I have come to the point that:
    1. I no longer care what people say. They don't have to deal with it, I do. I have
    to be happy with what I achieve, as her carer. She was diagnosed with Vascular
    Dementia in Feb 2010. We had been dealing with it for 2 years before that.
    2. I had to come to grips with the fact that my wife has the disease. That took me
    a long time.
    3. I also had to realize that the nhs cannot help me!!!. They only look after
    physical problems.
    4. By coming through these obstacles I realised very quickly that it was not my
    wife's fault that she had dementia. Bluntly - its the hand your dealt.
    5. These decisions also made me realised that my wife relies on me 100%. If I
    dont look after her, who will.
    6. It is stressful. So far I have lost a stone in weight. NHS puts that down to
    stress. I agree.
    7. We are now at a point where she will not cooperate with having a bath or
    changing clothes. Getting her to bed is a chore. She gets aggressive just
    changing to night wear. Anything she does not want to do, she will not do. I
    Have to coax her and think on my feet all the time.
  13. jpk

    jpk Registered User

    Jun 10, 2014
    warrington, cheshire
    Each person is precious, even you. I know that you dont think that way all the time, but you are walking beside her every day. Come rain, or come shine, or tears, or laughter. Fair play to you for staying with her. My wife has suffered for 7 years and we are still slogging along day by day. I dont look any further than going to bed tonight and that my wife is sleeping comfortably. Tomorrow will come and we will begin again.

    I must continue to support and help her because that is who I am. I will not give up because Dementia is a lonely world for a sufferer.

    God Bless.
  14. seasong

    seasong Registered User

    Apr 13, 2014
    South East England
    Thank you

    Thank you all so much for your heartfelt and heart warming responses. It takes the edge off my pain a bit when I read and re-read your replies as I feel a little less alone in coping with the daily reality of this awful illness.

    I wish each and everyone of you continued courage and peace in the knowledge you are doing your absolute best to help and support your loved one.

    Warmest wishes,

  15. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    It's the hardest thing I have ever experienced. It's like constantly grieving with no end - you can't go through the steps of grief because the shell is still here.
  16. julie66

    julie66 Registered User

    Oct 4, 2013
    I agree 100 percent I care for my husband who is a very proud man - some days I just cannot believe he has dementia, and I dont think he can come to terms with it either
    I also think he will get better although I know he will not - just breaks my heart every day

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