Is grief normal while Dad is still alive?

Discussion in 'Middle - later stages of dementia' started by kazbah, Apr 22, 2015.

  1. kazbah

    kazbah Registered User

    Oct 4, 2013
    #1 kazbah, Apr 22, 2015
    Last edited by a moderator: Apr 22, 2015
    I am currently off work due to stress some of which is due to work related stuff. However, part of my problem is due to the issues we as a family are struggling with. My Dad has mixed dementia and while he looks quite well, he is slowly slipping into his own little world. Mom is is full time carer but she too is struggling with a physical health problem. She refuses help most of the time but we have managed to persuade her to have a carer in for a couple of hours a week, not much I know but that's all she will accept. I am taking them both away for a long weekend next month so Mom can relax while me and my husband can help look after Dad. There is no way she will go anywhere without him so they come as a package which is fine by me. When we are home, we will hand Dad back to Mom and then she has the worry back 24/7. A bit like handing a child back to its parents. MOf course we continue to visit and support them but for Mom it's back to reality. My poor Mom has lost 3 of her family (2 brothers and a sister in law) in the last year and cannot grieve with my Dad because he just does not realise they are dead. All of this is so upsetting and I feel as though I have already lost Dad to this vile condition. Is it normal to feel like this? I love my Dad and feel guilty just having these thoughts.
  2. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    It's very very normal.
    You are grieving for the Dad you knew
    You are grieving for the familiar family dynamic that you grew up in.

    I just want my old Dad back.
  3. kazbah

    kazbah Registered User

    Oct 4, 2013
    Me too! Isn't it heart breaking? I miss so much of him, for instance, I look around my home and remember him helping me to decorate it. He was a brilliant painter/ decorator. Now he has no idea what to do. I feel your pain too Cat.
  4. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    It is heartbreaking. It's losing them bit by bit.
    Keep posting here & you'll get loads of support. This place is my lifeline.
  5. kazbah

    kazbah Registered User

    Oct 4, 2013
    Thanks for your kind words. Sadly there so many of us in this awful position. Will keep posting.
  6. Angela T

    Angela T Registered User

    Jul 13, 2014
    Yes I think it is normal.

    Since my mother went into care in January I have been going through something similar - less intense than after a death, but a kind of prolonged grieving process.

    Grief is about adapting to loss and absence... and that is what we are doing.

    I have lost my mother to dementia - the weak and frail old lady who is now dependent on me to take all her decisions, and on others for her day-to-day care and wellbeing, no longer looks like my mother, or sounds like my mother - it is very disturbing.

    We need to recognise that this illness takes a toll on us, we need to actively look after ourselves.

    I feel your mother has a lot to deal with. Can she not get some grief counselling? In addition to the stress of being a carer, and feeling she has lost her husband to dementia, she is grieving for her brothers and sister-in-law.

    That is a lot to deal with.
  7. kazbah

    kazbah Registered User

    Oct 4, 2013
    Hi, thank you for taking the time to reply. We have tried to get Mom to talk to someone and will continue to suggest that. I think she is afraid of what she calls, giving in and sees that as failing when we all know that it isn't. Talking to us is not like talking to a professional but it's all she will accept for now. I have to tread carefully with her.
  8. Angela T

    Angela T Registered User

    Jul 13, 2014
    Yes I'm sure you have to read carefully with her.

    She wants to cope, to manage everything - for your dad. But her grief at losing 2 brothers won't go away - and it is very hard, losing brothers or sisters at that age. She has known them all her life... and suddenly they are not there.

    If at least she talks to you, that is something.

    You could maybe find some info or advice on Internet, and print something out to give her, then when she is ready, she will know where to turn for help/counselling...? The Compassionate Friends has some excellent info on sibling grief.

    She probably won't let herself grieve for the moment, she feels she has to be strong for your dad.

    It is a very difficult situation.
  9. Bill Owen

    Bill Owen Registered User

    Feb 17, 2014
    farmly do not undstand

    Some of my wife family . can not see that you are a lone . and life is just not the same. my wife has lewy body .Alzheimer . and every day there is a bit of her gone .
  10. kazbah

    kazbah Registered User

    Oct 4, 2013
    I am sorry to hear that and thank you for taking the time to reply. It is so hard to stand by and see the effect this has on the sufferer and their families.
  11. Babymare01

    Babymare01 Registered User

    Apr 22, 2015
    Oh what you are feeling I feel to. I grieve everyday for my loving mum. I have for sometime now and its so so draining :( I grieve the mum who was my best friend. My mum no longer recognises me. No longer talks to me but she can be quite nasty at time. I know if my mum know it would break her heart totally. But this isn't my mum as this dreadful cruel illness as taken the mum I knew. Everyday I wish for 5 mins, 5 precious mins, back with my mum. But I go and see her. I sit and talk or simply just sit holding her hand. What you are feeling is natural and hard. A big hug x
  12. marmarlade

    marmarlade Registered User

    Jan 26, 2015

    my hubby went into care in January its 3 months now and i still cry sometimes for no know reason it hits so hard that he is no longer home with me and probably never will be again i suppose this is grief as hubby is not the person he was and its very hard to take this in but a good cry helps and off i go again to see him and will as long as i have him so yes i would say its grief and im sure others in our position will agree
  13. Suzanna1969

    Suzanna1969 Registered User

    Mar 28, 2015
    #13 Suzanna1969, Apr 22, 2015
    Last edited: Apr 22, 2015
    I am grieving for my Mum as she slips away from us. Her dementia has progressed rapidly since she had a major stroke in August. Since then a series of mini strokes/TIAs have taken away more and more of the person she was. She is still a sweet lovely person and in a way that makes it worse.

    She spends most mornings crying inconsolably because she knows what is happening to her. Yesterday my Dad rang me in despair. Mum was in a terrible state because she wanted a shower and couldn't remember what to do. For WEEKS I've been trying to persuade her to shower and wash her hair and then she chose yesterday as the day she HAD to have one RIGHT NOW! Dad has Vascular Parkinsonism so I certainly didn't want him to try and help her in case she pulled him over as she got in/out of the bath so I sped over there.

    At first she was ok, knowing I was there to help her. She had a shower with me standing by and prompting her how to wash etc, then she bent over the basin while I washed her hair. Then I tried to get her to dress herself (she is still able to do this).

    Then she looked at me and I knew the curtain had fallen: she suddenly didn't know who I was. She asked me if I was Joyce (her sister), then Anne (her cousin) and got very confused when I told her who I was. We sat next to each other on the bed as she held my hand and looked at me in total confusion, trying SO HARD to remember, with me willing her to realise yet not wanting her to get more upset. Eventually I managed to persuade her it didn't matter and to get dressed. I thought she might be better if I left her to it, so I went through to the dining room where my Dad was trying to finish his breakfast (2 hours and counting!).

    Then Mum came through, still in her dressing gown, sobbing uncontrollably. She took Dad's hand and said 'I couldn't remember her. My own daughter. I can't remember her. I'm going mad.' It was beyond awful. She knows what is happening to her and is still aware enough to be terrified. I'm not surprised she cries for hours most mornings, I certainly would.

    Yet still I haven't cried. I wonder what is wrong with me. I've come close a few times but swallowed it down, I have to hold it all together and I wonder if, once I started, I wouldn't be able to stop.

    I nearly went a few days ago when I went through Mum's knitting bag (she'd asked me to get rid of it as she accepted she wouldn't be knitting any more). An accomplished knitter, she used to knit complicated little squares then stitch them all together and crochet round the edges to give to the local premature baby unit. In her knitting bag I found dozens of assorted squares all ready to be stitched and a square still on the needle almost finished. That's when I nearly broke but I stopped myself.

    An everlasting memory from my childhood is the continuous soft clicking of Mum's knitting needles as we watched TV. She couldn't even do a basic stitch now. A part of me is almost praying for her awareness to go so that she no longer realises what is happening, it would be kinder for her I think, but dreadful for my Dad. Watching her being tormented like this is agonising and seeing my dear Dad struggling to get out of a chair and barely able to walk around the bungalow while she hovers around him anxiously is just horrific. I catch myself wishing it would all be over for their sakes because their conditions are both so cruel and merciless, then I hate myself for being so awful because essentially I'm wishing my parents were dead. And yet I still haven't cried.

    Except when the cat died before Christmas. I cried like Gwyneth Paltrow then! :(
  14. AliH1970

    AliH1970 Registered User

    May 22, 2015
    Hello, I feel exactly the same. This is horrible. My dad is slipping from us bit by bit and my poor mum is having to cope with his dementia and all the things that accompany it. To me, he's almost gone already, at least in mind, but mum, who's 79, is really struggling with him, as she too has health problems and can't rely on him to look after her as he did up until recently. Sometimes I'm able to cope with it well, but at other times the enormity of the loss of such a creative and talented mind is overwhelming.

  15. velveteen

    velveteen Registered User

    May 20, 2012
    I'm in pretty much the same situation as you except mum is in a home. She too had a massive stroke 2 1/2 years ago about 8 months after her Alz diagnosis. She was a keep fit teacher and so losing some mobility has been difficult. She also still realises that something is wrong. She cannot understand why she is in a home even though she is doubly incontinent and would never remember to eat. We have just had to move her to a new home ( she was served 4 weeks notice because she was getting too agitated) Her new home is fantastic but she still wants to live in a little house of her own and go out whenever she wants on her own.
    Today she was so depressed she was just crying so much and today was a first - she said she wanted to die and she was going to kill herself. It was so upsetting. I wish that she could progress to the stage where she doesn't know what is happening.
    I had up until recently felt as though I was coping very well with the whole situation_ it was difficult but do-able but now I am struggling.
    I have started crying !( Someone on this site explained about anticipatory grief which makes sense but also I feel so guilty that she is not with me even though I know it would be so difficult ( we didn't have a great relationship in my childhood) Everyone tells me it would not work - relatives, care workers etc. My sister lives abroad so it would all be down to me. I just feel so overwhelmed coping with work Mum kids and my hubby working away for about 8 months of the year
    I feel the same way as you - and I think the majority of other carers/loved ones do too - it would be a merciful release for Mum not to be in this constant state of sadness, anxiety and fear anymore. but then here comes the guilt again.
    Thank God for this forum - I don't post very often but its good to read the post of others and then be able to help them or just vent.
    You sound like a fantastic and patient daughter. Me thinks that the pre Christmas cat tears were not just for your poor little cat? Keep up the good work and remember we WILL make it to the end of this horrendous situation - we will.

  16. annii1

    annii1 Registered User

    Jul 5, 2012
    west sussex
    I feel that I have been grieving for mum for years now and still am, though she is still very much here, in carehome and I see her very regularly. I still try to ask mum's opinion, I miss her advice, support, chats, closeness, she can't be there as she was but I can still hug her and tell her I love her.

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