Why Don't They Understand?

Discussion in 'After dementia — dealing with loss' started by MollyMae23, Jul 31, 2015.

  1. MollyMae23

    MollyMae23 Registered User

    Jan 7, 2012
    40
    It is coming up to 5 months since my lovely mum died. I am a little more composed now but not totally and, as I would think would be expected, there are times when I just breakdown. I've been through bereavement counselling and have learnt that I should allow myself these moments as part of the healing process but it seems that the World believe I should be over it by now.

    Even my family give me pitying chats as if to say, poor sole, she can't help being so pathetic but lets try and encourage her to move on.

    Yesterday I had to resign from a caregiving job I had started in June because I was finding it too upsetting. In fact, what I found most upsetting was that the people I was visiting, who were elderly and had some mobility problems but could still have rational thoughts were so down on their lives knowing that mum and I would have done anything for her not to have had dementia. Anyway, i was silly thinking I could do it but I wanted to try and I felt really guilty having to pack it in so quickly but the really weird thing was they couldn't understand why it was affecting me and this is what I mean.

    I have had conversations in the last month which are so insensitive I can't believe the people saying it do not realise. Mainly I get, 'are you STILL grieving?' And the equally upsetting recollection of how they felt when their Mum, dad, grandma, grandad died in old age. Now any kind of grief is awful and I suspect their stories are given a brighter edge in hindsight but it doesnt get away from the fact that when you have cared for anyone 24/7 for a long period grief increases. Add to that the dementia element when you slowly lose the loved one bit by bit and don't really know if they even knew it was you sitting next to them in their final days, another Increase. I don't expect to get over this at all, I do think I will find a way to live with it but surely still feeling sensitive and sad after a short time is reasonable for any type of bereavement isn't it so why do I feel like I am being judged as some kind of simpleton who can't accept that loved ones do e in old age. If mum had got to her 92 years clear minded and able bodied I would still grieve but I think my grief is more connected to the fact she had to live through 5 years of suffering from this dreadful illness and the loss of the closeness formed between us in those years as I slowly took over her life to finally being her legal representative by POA. I feel like a part of me has been lost, does anyone ever get over losing a part of them?
     
  2. Babymare01

    Babymare01 Registered User

    Apr 22, 2015
    305
    Oh hun there is no set time limit to grieving for a much loved person and I believe people who think there is may not have lost some one they are close to. Grief affects people in so many different ways. Don't be afraid to cry and accept that there will be days when you are down and low. There will be things - songs,places,smells etc - that long down the line will set you off and hey is that something to be ashamed of? Not at all. It just how it evokes our memories.
    My mother is still with me but far down the journey of Dimentia but 2 years ago - and please I know this is nothing like you're situation - I lost a very very much loved horse. She wasn't just a horse but my rock, my soulmate, my friend through an abusive relationship. Even now I have days when I cry because I miss her - am I ashamed of that. No and I will never make excuses. But those days are becoming less frequent and I now have more days where I will look at her photo and smile. What Im trying to say is in time - and your time - the tears will start to dry and the memories will bring a smile. Until then you allow yourself to grieve - a big big hug xxx
     
  3. Effy

    Effy Registered User

    Jul 26, 2015
    11
    Northern Ireland
    Molly Mae, I'm so sorry you have been through the life changing experience you have described. I think I understand something of what you are saying, as I lost my darling dad 4 months ago today and just this week had a real set back in dealing with my grief when a friend hurt me so much with his thoughts about the nature of our relationship over the past few months. That situation is long and complicated, and isn't the reason I write now, apart from me feeling 'ok, so I get 4 months from the death of dad, and that's obviously how much I'm allowed before some people think they can put the boot in and expect me to react in my usual way'. Like you, I feel upset by the seeming expectation expressed by some that I should no longer be rocked by grief.
    I suppose all I can say is that the reality is, until you have experienced something of what you describe, you just don't 'get it'.
    I don't know about you, but sometimes I feel like screaming at the world and saying I am NOT ok, but I reckon that I am going to have to find a way to get it into my head that, although my world has changed for ever, the reality is for everyone else it hasn't. At first when my dad died I felt some comfort in watching how the world did go on and I'm trying to talk myself into finding some comfort in people beginning to treat me as a normal person again, someone who doesn't need to be handled with kid gloves. The problem is that I'm not caught up with the world yet and I do still need understanding of my grief and that's why I'm finding help in this forum and I hope you do too. Of course folk should understand that your experience of caring for a loved one through the hell of this disease and your grief is still completely raw and impacting on your life. At least you've found a place on here where others have some idea of how you are feeling. And hopefully we'll get through.


    Sent from my iPhone using Talking Point
     
  4. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    426
    Hi MollyMae,

    I've just been having a very similar conversation with a friend about some other "friends" reactions to my clinical depression. I had a nervous breakdown in February, see a psychiatrist and take lots of pills. Recovery is a slow process, but just recently I've noticed that some people around me are starting to get annoyed. I've been getting insensitive comments from them like "Are you STILL ill?" "What do you have to be upset about?" "It's time you stopped feeling sorry for yourself", etc. This has set me back quite a bit.

    If your mum passed away only 5 months ago, that is no time. 5 months can flash past like the blink of an eye when you are mourning someone. It can seem like yesterday. I am amazed that people think you ought to be over her passing already. Them voicing that opinion shows a shocking lack of sensitivity, but the sad thing is they probably think they are helping you.

    You are also perhaps not only feeling grief for your mum's loss but also dealing with finally having the opportunity to let out how you feel about the trauma of the last 5 years. I think what happens to many people is that when they are in a long-term and very stressful situation, they somehow manage to keep going, but then when it is finally over, all that stress comes flooding out. It's like they can finally let themselves go. The way you feel is totally normal, and people who have been in the same situation will understand that.

    Whatever the case, if those people around you upset you, do not hesitate to tell them to **** off! You are probably a lot more of a polite lady than I am, but I tell people to shove it all the time now. I don't care if it offends them. If people make you unhappy, then tell them that. They need to know.

    I hope you feel better day by day. Hang in there.

    LS
     
  5. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    #5 fizzie, Aug 1, 2015
    Last edited: Aug 1, 2015
    Hi Mollie
    You are in the very early days - 5 months is no time at all. I too am 7 months away from my Mum's death and mostly I have adjusted but some days are really not good.

    I don't take any notice of what people say. Most of them have never been through intensive caring and the exhaustion of keeping on top of things and those that have and still 'don't get it' I just feel sorry for.

    We are all here to support you, keep posting and take your time doing whatever you need whenever you need to. I used to hear people say 'be kind to yourself' and wonder what on earth they were talking about but now I know. So I will say to you 'Be gentle and kind to yourself, surround yourself with the people who do understand and keep the others away.

    I still go to our carers café and people are so wonderful there. Maybe you have a local support group that you can go to, it makes a big difference to me. When you are ready you might be able to go back to caregiving if you want to as I am sure you have such compassion and understanding that you would be greatly valued.

    Thinking of you, remember 'Be kind to yourself' xxxxxxxxxxxxxxxxxxxx
     
  6. CeliaW

    CeliaW Registered User

    Jan 29, 2009
    5,655
    Hampshire
    It's very hard isn't it? I am never sure if it's that people don't think or they just don't understand. My Mum died in May after all the sad, destructive journey of dementia and, like you I miss my Mum very much. When Mum died and since, it has brought memories of losing my sister (to cancer) back to the forefront again. I was her carer for the last six months so they are a mixture of very precious and very sad memories. Two weeks ago tomorrow my oldest brother died fairly unexpectedly. I was talking about it to someone I would consider a fairly close friend and said how one death stirs up memories as well as re the person who has died and seem to make each time harder.

    His response? "Oh well, chin up!"
     
  7. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,056
    GLASGOW
    Hello Mollymae, im sorry that you list your Mum. People can be cruel and insensitive but they really just lack any understanding. My dad died 20 years ago and i still think of him and miss him almost every day. I understand a loss that takes a big part if you away. My dad did not have dementia but cancer. It took a year from diagnosis to death. I had nightmares for months after he died. It took me about 18 months to feel like i was living again. I wont say normal as it could never be that again. A new normal. Be kind yo yourself and dont put a time limit on it. If others are insensitive dont talk to them about it. I really had nobody to talk to. It never helped after the first few months anyway. One thing my councellor suggested i did find useful. I kept a gratefulness journal. I found 3 things each day i was grateful for. I read that when i was low and it helped. Why not give that a try? Today i am grateful ghat yhe rain has stopped, that my mum is happy in her care home and that i am having a roast dinner with my children. Its the small things that make life worth living. Sending you love and healing thoughts. Quilty
     
  8. jan.s

    jan.s Registered User

    Sep 20, 2011
    7,352
    Hi MollyMae

    I am so sorry to hear about your Mum.

    It is so hard to cope with the sadness of losing someone, especially after having cared for them for so long and with such intensity. You are right, they are almost a part of us.

    I lost my husband to dementia in April and have many days when I struggle to cope, and have to give in to the sadness.

    I think many people make insensitive comments, because,
    a. they don't understand, and
    b. they don't know what else to say. I think better to say nothing that something crass.

    I admit, there is nothing anyone can say to make me feel better, the grief is within me and my thoughts are there too.

    For me, I try to think about the positives for Roger, that he would have hated the way he was and that, to use the well worn line, he is no longer struggling with life. Sometimes I find that hard, as he was very contented at the end, and we used to laugh together and I used to tell him things, but I know he would have got worse and I know he would have hated that.

    I bought a book, which has helped me, especially to know that the way I feel is normal. It's called Overcoming Grief by Sue Morris, and is recommended by Cruse.

    Sending love and hugs. J x
     
  9. Elvis87

    Elvis87 Registered User

    Sep 5, 2016
    1
    Hi everyone
    I'm 5 years in to the grief, and it still comes in waves, sometimes they are so strong it feels like I'm back in the hospital room and other days I am grateful that he is not suffering through trying to remember. 12 months ago the GP told me she thought I had depression so they sent me for therapy and the therapist diagnosed A form of PTSD, the loss of my grandad who was basically my dad was too much for my mind to cope with after all the strain of looking after him for so long as well, me and my mum cared for my grandad who had vascular dementia, we moved in to his house to care for him and near the end basically gave up our whole lives as he couldnt look after himself at all, since he passed I have had a little girl and even though everyday I am thankful for her, she reminds me so much of my grandad even though she never met him, and then I'm hit by that wave of I wish he'd been around to see her...... But there is defiantly no time limit on grief and people who have never lost someone to this horrible illness don't understand they try to be supportive for a while but when your not conforming to their time limit of grief they loose interest or get impatient that you aren't just over it already! Sorry for going on. First time on this forum X
     

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