Dealing with grief before loss

Discussion in 'I care for a person with dementia' started by Cheekycow, Feb 28, 2017.

  1. Cheekycow

    Cheekycow Registered User

    Feb 8, 2016
    15
    I'm really struggling with grief even though mum is still with us. She is now in a nursing home and I visit regularly but I miss her. I miss being able to pick up the phone and hearing her voice on a daily basis. I miss being able to discuss things with her. I miss having a laugh with her.

    I hang on desperately to the very rare moments that I feel I have mum back but the overwhelming feeling of loss whilst someone is still here is unbearable.
     
  2. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    #2 lemonjuice, Feb 28, 2017
    Last edited: Feb 28, 2017
    Couldn't just read this and not answer.

    I too am coping with the loss of my mother but 'physically she is still here. She's been in her NH for 5 years now. It's 2 and a half years since my mother has said anything, smiled at me or squeezed my hand in response. It truly is overwhelming difficult at times and I cry for her release from this.
    However it seems she still wants to live and fights through all the emergencies.
    I've had to 'back off' visiting, I just can't bear to see her. Often I don't recognise her and certainly my feisty, outspoken mother died years ago.
    It was her birthday on Sunday and as usual after an ASC she had her eyes open, which she hadn't for the past 2-3 months, but she just stares and doesn't respond. It seems the carers do occasionally get a response and so I have to realise that effectively my mother sees the NH staff more as family than her natural family.
    The mother I had is indeed dead, our relationship with each other seems to be broken but her body continues and it is really, really hard.
     
  3. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,344
    Merseyside
  4. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    #4 lemonjuice, Feb 28, 2017
    Last edited: Feb 28, 2017

    Thanks for referencing that thread. I note Saffie's post "Grief may be felt when you gradually lose someone to dementia but at least they are still here in person and you are involved in their lives, even when in a nursing home, and you can help them to make the best of the life they have left which can be of some consolation, no matter how little.

    To me, it is nothing like the absolute grief you feel when you lose that loved person forever.
    "

    One can get to that stage even before the physical death and it's that 'grief', as I posted above, that I struggle with particularly. My mother is truly lost and we just have to wait for the last few signs of life to close down.

    That post which mentioned 'living in limbo' is so true. I feel guilt that I wish I could say that final Goodbye and finally have closure, yet that evades us.
     
  5. Nut

    Nut Registered User

    Sep 30, 2013
    35
    Norfolk
    Am grieving too as Mum struggles and gradually, little by little, leaves us. It is horrible and endlessly sad. My guess is that many many of us feel that too.


    Sent from my iPad using Talking Point
     
  6. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,344
    Merseyside
    It's heartbreaking isn't it?
    I lost my dad in October but I grieved the loss of him for a good 12 months before. I just wanted my old dad back.
     
  7. Saffie

    Saffie Registered User

    Mar 26, 2011
    22,499
    Female
    Near Southampton
    I also said

    As for grief. It is really a multi-faceted concept isn't it with love and guilt, loneliness and regret, all mixed up in it and as such it is different for everybody.

    However, I still miss my husband every day and although it was so distressing to see him graduallly lose his life in every way, sometimes I just wish I could jump in the car and drive to his nursing home just as I used to do every afternoon until he finally left me 2 years and 8 months ago.
     
  8. irismary

    irismary Registered User

    Feb 7, 2015
    499
    West Midlands
    I get an overwhelming sense of grief sometimes. Both OH and mom have Alzheimer's and I am losing them both day by day. Its hard work now and sad and horrible but what after? When will it be, how will it be. I sobbed on Christmas day as I was too poorly to go to my brother's for dinner as planned with mom - first time ever that I have not been with her on Christmas day and as she is 93 and frail it could be her last. My lovely husband tried to console me but didn't really understand because of his Alzheimer's. Mom forgot quickly, enjoyed getting her presents a few days later and we all got together on New years day but it hurt so badly. I always felt I didn't grieve when my dad died 25 years ago as I had to look after mom, and he would have wanted that, now husband and mom are slipping away. Sorry I've rambled on.
     
  9. Georgina63

    Georgina63 Registered User

    Aug 11, 2014
    954
    Hi Cheekycow, it's so difficult. I'm experiencing this with Mum and Dad bothof whom have AD and it's a continuing thing as there are so many losses! There is a book by Pauline Boss called 'Loving someone with dementia', which describes this really well and which I found helpful. I think recognising that we are experiencing grief is a good thing even if it doesn't feel like it's making it any better. Sending wishes. Gx
     
  10. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,540
    Ireland
    It is a grief, and a loss, watching someone you love gradually slipping away from you. It is that sadness for their situation and suffering, and grief for the loss of the relationship we should be enjoying with them because they're still here, but that's denied to us because of their illness, and grief too for all they have lost. All those things need to be grieved. It does feel different though from the grief of the final loss. You think you're prepared and ready, and you've been grieving for so long, and watching for so long. But I think that while part of us knows that the person is dying, the gradual deterioration, the long illness, one infection after another, each one somehow recovered from- part of us doesn't believe it's ever really going to happen. We kind of enter the Twilight zone between life and death and think this is how it is going to be from now on, and it's never going to change. But of course it does, and we find we have a new type of grief to deal with.

    Wishing all of you who are now in the twilight zone peace. xx

    Sent from my Moto G Play using Talking Point mobile app
     
  11. Saffie

    Saffie Registered User

    Mar 26, 2011
    22,499
    Female
    Near Southampton
    That is it exactly Lady A. The thing is, you have have been there to know that.
     
  12. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    #12 lemonjuice, Mar 2, 2017
    Last edited: Mar 2, 2017
    Can I just ask, and don't feel you have to answer if you don't want to, but how 'long did that period of 'twilight' last?

    For me it is now going on for 2 and a half years years, since my mother was able to respond with a look, a smile or even a hand squeeze. Coming up 2 years since Drs and the Home asured me I probably wouldn't have to watch her suffering for much longer.

    In the intervening years I've watched my father-in-law's cancer get worse and watch him die, followed by my mother-in-law, who had no known serious illness. I really feel I haven't the strength to watch my mother's very slow, long drawn-out deterioration.

    My mother has now been 3 months free from emergencies and usually she's better health-wise over the summer and I just see this 'watching and waiting' stretching out seemingly forever. (In the interim I've got to cope with husband undergoing radiotherapy treatment.)

    I have to say her sister was at a worse (very last sub-stage) stage and lasted 6 years in that stage and was much older than my mother when she finally died. So it is a real worry if she has the same genes.

    How does one summon the strength to watch and wait indefinitely?
     
  13. Saffie

    Saffie Registered User

    Mar 26, 2011
    22,499
    Female
    Near Southampton
    #13 Saffie, Mar 2, 2017
    Last edited: Mar 2, 2017
    I can't answer for Lady A of course but I suspect, if she is like me, the twilight lasted until the darkness came. Then the final grief takes over - and when that fades I have yet to discover.
     
  14. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,540
    Ireland
    There's sadly no way of knowing. That's the thing with this illness- it's a very individual thing. I and my late husband were very"lucky" in that he knew me until he died, and that period sort of hanging between life and death was really only about a week. Although his final illness (aspiration pneumonia) had lasted for two months. He was immobile and couldn't even speak during that period, but his eyes would light up when he saw me.

    Sent from my Moto G Play using Talking Point mobile app
     
  15. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    #15 lemonjuice, Mar 2, 2017
    Last edited: Mar 2, 2017
    Oh, that sounds so like what I feel.
    The 'darkness' has come and I feel in a tunnel with no pinprick of light, but knowing there is still a long journey in the dark to go.
     
  16. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    Thankks for the reply.
    If only my mother could even respond by opening her eyes, turning her head to look or show in any way that she is 'enjoying life' at whatever level.

    EDIT
    Does anyone know if I could see Hospice services myself? Someone once said it was possible?
     
  17. Saffie

    Saffie Registered User

    Mar 26, 2011
    22,499
    Female
    Near Southampton
    You do have a pinprick of light even though it is hard to see. That pinprick can allow you to show your love whilst you are able to even if it is not recognised or reciprocated.
    When the final grief takes over you can no longer do this and you are just left with the emptiness of knowing this. xx
     
  18. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,679
    North West
    I think the whole process that you experience when watching a loved one deteriorate, however slowly, is accompanied by an element of grief which grows over time. During periods when the decline seems to have slowed or stopped altogether you may not be so aware, but it's still there I've found.

    As the inevitable end game approaches, the grief has grown. You can put it to one side at times but it's always there. And I'm sure that, as people have posted frequently, it never goes away.
     
  19. Mammamu

    Mammamu Registered User

    Jan 10, 2017
    158
    Bucks
    #19 Mammamu, Mar 2, 2017
    Last edited: Mar 2, 2017
    Dear lemonjuice,
    Thank you for sharing this! It has made me realise this is what's going on in my life....
    I have days I just want to run away, hide or lay in bed with a blanket over my head.....
    Sometimes wondering if I'm going mad? Or ill?

    I lost my mum 1998, and now it is clear to me this is the same feeling! I feel like I have lost the FIL I once had,he can still smile, sometimes knows my name, I have always thought I knew how I feel about "the end" but not when the end never happens....

    My mother die suddenly,massive brain tumour when I was in my late 20's.She was only 60, it was a shock & very difficult at the time. However I feel "lucky" as it's believed she did not suffer any pain or if any not for long.
    Now experience years of dementia with parents in law,if I can pick my ending I know which one I would pick....
    I have learnt so much in the last few months and I'm truly grateful to you all, all your shared experiences on TP is helping me enormously, Thanks!

    I'm so sorry for the situation your mother is in and wishing I could help. Maybe you can find some sort of comfort in knowing that you have helped me? (Not sure if this makes any sense at all?)

    I wish we could all have are wishes come true......

    Mammamu [emoji202]


    Sent from my iPhone using Talking Point
     
  20. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    #20 lemonjuice, Mar 3, 2017
    Last edited: Mar 3, 2017
    Mammamu
    Thank you.

    Like you my father died very quickly from a massive embolism. Very fit and healthy, the ambulance crew kept asking what medications he was on and we said,"None."

    Although a shock at the time, compared with watching mt mother 'die' so slowly is so much more painful. Especially as she's had heart trouble since her mid 40s and my father (and I ) always assumed he'd be widowed fairly early.

    As I have said to people, if my talking openly and honestly about what it's like to watch someone go through the very worst of dementia and it helps someone, it can help make sense of this dreadful disease for me.
    In the final stages, for those who don't die before reaching it, it strips away everything about a person. The more people are aware the greater the chance of changing people's opinion about 'dementia being a fairly minor problem with memory' and the greater the hope for future research.

    There can surely be nothing worse than watching a LO die years before their body catches up.
     

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