Coping with grief during Alzheimer's

Discussion in 'Middle - later stages of dementia' started by LauraH, Aug 2, 2016.

  1. LauraH

    LauraH Registered User

    Aug 2, 2016
    Hi all,

    Firsts time I've posted on here, feeling the need for some support.
    Mum has been in hospital for almost four months now after going rapidly downhill. Started off suddenly extremely agitated but since she's been in hospital she seems to have become incontinent and angry, both of which are totally new. she also has a different look in her eyes, has lost loads of weight and doesn't wear her own clothes etc.

    Apart from worries about what happens when she comes out of hospital I'm just struggling with the loss of my Mum. I feel she IS still here, but at the same time I can't talk to her at all like I used to. I hate seeing her suffering and I just miss her so so much. And I know there is probably worse to come.

    Sorry for Such a gloomy post but really felt the need to express this today.

    Good wishes to you all, I know there are many of us.
  2. Kjn

    Kjn Registered User

    Jul 27, 2013
    Welcome to TP Laura, you have found the best place to vent /chat. We all understand what you are feeling X
  3. Patricia Alice

    Patricia Alice Registered User

    Mar 2, 2015
    Hi Laura and welcome to TP

    Your post says everything that is happening to our mum right now, apart from that my mum is not in hospital but in a nursing home.

    I know exactly what you are saying and how you are feeling, I miss my mum so much too that today I have cried non stop.

    For the last 3 weeks she is hardly eating/drinking, she stares into space and has become quite angry, agitated and rude to people, even using words she would never say.

    Today mum was hallucinating, seeing flies in her room that were not there and I had to pretend to catch them and throw them out the window. It turned out that she has a urine infection and I cannot get her to drink any fluids, she closes her lips tight shut. She becomes angry with me and will not listen to my pleading.

    I have found a lot of help and advice from this forum, when I have been at my lowest and I am sure you will too.

    Do not ever feel alone Laura, someone is always here.

    Best wishes x
  4. Babymare01

    Babymare01 Registered User

    Apr 22, 2015
    Welcome Laura.

    I think we all on here understand your grief and loss of your mother. Please keep posting and have the support of us all xxx
  5. Ozgirl

    Ozgirl Registered User

    Aug 3, 2016

    Good morning Laura and everyone. This is my first post. It is very difficult realising that our loved ones are no longer there.
    My mother died 13/07/2016 after a long illness, I was caring for her and my husband who has Alzheimer's, as my husband gets worse I see him slipping away more and more.
    We all understand how you feel and know how difficult things can be.
  6. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    As someone else said there is nothing anyone can say to help you feel any better.

    'Grief' seems to be a permanent state when watching our LOs.

    I've often said I miss my mother. Physically her body is still here but everything my mother was and that I grew up with has now gone and effectively I 'lost' my mother years ago.

    Somewhere I read about anticipatory grief and that sums up what many of us have to deal with on a permanent long-term basis. It is painful and just as distressing as a 'real death' but without the closure of being able to move on.

    It's tough, really tough, but there are many on here you will understand.
  7. Gwendy1

    Gwendy1 Registered User

    Feb 9, 2016
    Hi Laura. This is a great site, with people who understand, and who don't judge you, are just are there for you. I totally understand the grief you are feeling. I miss my dad, too. I miss his sense of humour, his smile and the conversations we used to have. But, he's still here. Just a different, heartbreaking version of my dad. My dad, as I know him, is lost. Very, very difficult to deal with. Xxx

    Sent from my iPhone using Talking Point
  8. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    Hi LauraH
    welcome from me too
    your post isn't gloomy, it's how it is for you right now, and it's good that TP is here so that you can get it off your chest
    I just wanted to send best wishes to you and your mum
  9. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    Hello Ozgirl
    my condolences on the loss of your mother
    so hard for you grieving for her and also caring for your husband
    I hope you find TP a support - there are many understanding folk here to share your experiences with
    best wishes to you and your husband
  10. beverrino

    beverrino Registered User

    Jan 12, 2015
    welcome to TP Laura

    I find it hard coping with caring for someone with such a devastating disease, while trying to upbeat and not to show it. When I am with mum I try and be happy and chatty, even though the conversation is mainly one way - I just don't want her to see my sadness. Then I go home, normally with a headache and totally drained with all of the 'acting', I need to do.
    Reassurance to her that everything will be okay, while inside aching with where this will end up. I try to take each day as it comes now and it doesn't get me down as much as it did.

    This is a long road and I wish everyone on it the best journey they can have.

    Just remember Laura - you are not alone, this is a wonderful community that you have found xx
  11. saucepan

    saucepan Registered User

    Jul 30, 2014
    You have my total sympathy. It is such a cruel disease, as we watch our loved ones disappear before our eyes.

    I can understand the greiving you are going through, we all do, and yet the person hasn't actually died. You are losing your mother and the tables have turned so that now you are playing the mothering role and she has become the child.

    It is heartbreaking, exhasting, horrible and just total rubbish. We feel so helpless, in being unable to fix them. I have been re-assured that the person we love and care for will always know that you are coming from a place of love and affection.

    We tried many different things for Dad, music is always a winner, old time songs. We got comody DVD's, old photo's really helped as a talking point, whenever I visited Dad in his care home I would take a selection and some would trigger memories and others not. Giving them time to relate to the memory is necesary and trying different angles for them to get to a memory sometimes works.

    It is so tough, and TP really is great, here people really understand as we are all in the same boat.

    One day at a time, and taking some time off for yourself is necessary and a good thing. Talking to your doctor might be useful for you. I had some councelling and now am on anti depressants which have just made me feel more robust to deal with things.

    Take good care of yourself and post again soon, there will always be someone to offer you a kind word.
  12. saucepan

    saucepan Registered User

    Jul 30, 2014
    I forgot to say that now would probably be a good time to look for a good care home for when your mom comes out of hospital. I know this may be the last thing you want to think of doing but it would be good to have a heads up of what your options are.

    Going to visit and having a look, a chat with the staff and getting a feel for the place is good. It is a hard thing to do, when my sister and I walked into the first care home we visited it was horrible, really sad, gloomy place. We had a chat and learnt a lot about the set up and how things work.

    The second place we saw was amazing, light and airy, big rooms, great staff etc. We were in quite a desperate situation as Dad had had quite a few bad incidents. We asked to put him on the waiting list immediately and fortunately the waiting list wasn't really relevant as others further up the list were contacted when a room had become available, and weren't quite ready for the move.

    We moved him in within the week, one of the most horrible days of my life, but we didn't have a choice. Luckily he settled in really quickly and was cared for so well by all the wonderful staff, who also supported us the family.
  13. anamarija

    anamarija Registered User

    May 2, 2014

    My Mum was diagnosed with Alzheimer's nearly 4 years ago. It was a very rapid deterioration. She usually thinks she is six years old and has the demeanour of a small child. Sometimes she is,12 and stroppy. She hasn't known my husband or myself or anybody for 4 years although she feels safe and behaves and trusts us. Aggressive with staff and resident and I have never heard such bad language from a six year old. I cope with humour but I cannot even count the nights I have wept. Sometimes the tears catch me by surprise.

    So, I send you all my thoughts. Be kind to yourself.

    Cyberhug on its way to you.
  14. Lets_Stop_Time

    Lets_Stop_Time Registered User

    Aug 23, 2015
    I would look into care packages if you want your mum to stay at home with support or consider care home.
    Theres no right and no wrong, if you cant cope with her care then you have to do what you feel is in your mums best interests in regards to safety and being looked after.

    The grief for us hasn't gone yet. But we visited so many care homes as we had to find the perfect one, one we felt we trusted and felt right when you walked in.

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