So Confused, So Sad - How do I start moving on?

Discussion in 'After dementia — dealing with loss' started by MollyMae23, Mar 25, 2015.

  1. MollyMae23

    MollyMae23 Registered User

    Jan 7, 2012
    Since Mum died three weeks ago my feelings had been so mixed up. On the first couple of days I just cried as if I would never stop, stopped, and then cried again. Then the practicalities started needing to be done so I cried first thing in the morning and coped the rest of the day. We had mum's funeral yesterday I was determined to do her proud but secretly thought I was likely to lose it again but my act paid off and I even got compliments from family members of how well I did. But the problem is I think I should be able to let the grief run its course, at least for the first month or so because I am not just going through the inevitable grief of losing my elderly mum, which many people hint at. In the five years since she was diagnosed I became her whole world and she mine, it had to be this way. We had no family nearby, very little help and I was living with her. As time went on I needed to provide the same kind of personal care which she provided to me when I was a child. She even started calling me mum at times because in a way, that is exactly what I had become. When she had an accident and ended up in hospital-care home-hospital-care home-hospital as detailed in previous posts, I felt so helpless because there was so little I could do for her and then finally not being with her when she passed breaks my heart

    However, the other side of my feelings are that mum is no longer suffering and therefore I no longer feel her pain. I don't have that little part of me always worrying about her and fighting her corner and I suppose, once I get my head together, I will one day remember how to get a job, live a life and be free to do what I want.

    But you know, all I can think is how much I miss her, not only how she was with full blown dementia but suddenly I am remembering how mum was before that and that hurts all over again because whilst she was here I had forgotten how she had been so remembering now is both wonderful and so sad because I am now missing two mum's before dementia and after. It is the most confused and lost I have ever felt in my life and yet my friends and family (and they are right) are telling me I need to start earning some money again and chase the local council to ensure they are going to transfer the tenancy (so far they have taken 9 months to decide) and make use of the free time I now have but to me it all seems so hard and early to move on.

    I have searched everywhere for advice or guidance how to deal with this very specific reaction to grief caused by dementia and can find nothing, my family and friends were not so close so, as mentioned before, think I am being dramatic about the death of an elderly mother but I guess many of you understand what I am saying, in my case my natural love for my mum was intensified by my being able to provide her comfort and care when she was most vulnerable.

    So,if anyone knows how I move forward or can advise of someone who can help me work this out I would be so grateful. I feel like I am stuck and I did promise mum in my funeral speech that I would remember her and move on.
  2. sunray

    sunray Registered User

    Sep 21, 2008
    East Coast of Australia
    I certainly understand where you are. I lost my husband in September 2012 and my mother in November 2012. I carried on through Christmas, then in January 2013 realised I was losing it and had some counselling. I was a mess for months. Luckily I was pension age so had an income because there is no way I would have been able to go back to work.

    The length of time it takes to "get over it" varies and I think the length of time you cared for someone and the amount of effort you devoted to that care is a factor. You not only lost your Mum, you lost a full time job, a 24 hours a day on call job. You became a high care nurse, housekeeper, time keeper, nutritionist etc. And all a sudden that job vanished and that takes a while to get over.

    Take the time you can to grieve, I know people expect six weeks and you are over it, but that is never the case. We all do it in our own time. But at the same time look after yourself, it is easy to neglect yourself and forget that good food, plenty of rest and a good dose of fresh air aids your recovery.

    My condolences on your loss. Now it is your time to take care of yourself and take a fresh look at life.

  3. blandford516

    blandford516 Registered User

    May 16, 2012
    Hi Mollymae,

    It has only been three weeks and I am sorry you have lost your dear mum . I have no idea what are the rights or wrongs concerning the grieving process . Like you I have mixed emotions , on one hand glad my mum is not suffering anymore but sad I will never see her again . I have always said my experience of Dementia was like a roller coaster of mixed emotions , up and down for months even years . Now mum has gone I guess the roller coaster is slowly coming to a holt and I have to find a new path in my life.
    My mum pasted two weeks before Christmas ,it is only now for myself I am coming to terms with it all and slowly moving on but I will never forget her and try to focus on the happy funny times we had since mum was diagnosed . She said some really funny things and I really believe she was well looked after . Give yourself time and really time is the only healer I believe . I am finding as time goes by I am eating sleeping better . Look after yourself you did your very best for your mum and she would want you when you are ready to remember her but also move on . Take Care x
  4. lexy

    lexy Registered User

    Nov 24, 2013
    #4 lexy, Mar 25, 2015
    Last edited: Apr 11, 2015
  5. win

    win Registered User

    Oct 14, 2012
    I too am so very sorry for your loss and fully understand where you are coming from. I was a carer for 11 years, 8 or more of those were 24/7 for my late husband who was a stroke survivor paralysed on the right side and with VAD. As you will understand I too did everything for him. In a way I am in the lucky position that I am retired now having had to give up my job to care but now old enough to draw a pension, so therefore do not have to work. I filled my days as soon as I could with this, that and everything I could find. Friends were wonderful particularly initially but I still see them regularly.

    My husband died in June last year, and I miss our lives together and the way things were so much, however I am beginning to find a good life for myself and is starting volunteering for Hospiscare in June. Not a day goes by when I don't wish my husband back with me, but I am also so grateful he is now free of all the pain and confusion.

    For me meal times are the worst, when I would normally have to do liquidised food and feed him, have his company and love being with him. Now it is mostly just me and nothing to do except the TV and no one to talk to (not with) as my husband could only respond with his head and eyes, but we kept a good conversation all the same It is a hard road, but one you will come to accept. You have wonderful memories and have done your mother proud, be proud of yourself, be kind to yourself, but do not cut yourself off from the outside for too long. Work is wonderful for taking your mind off things, I found that when we lost our young lovely son 20 years ago. People are wonderful, they make allowances if you let them and tell them how you feel. I hope you soon find peace and I wish you the very best for the future. x
  6. SallyPotter

    SallyPotter Registered User

    May 19, 2013
    #6 SallyPotter, Mar 26, 2015
    Last edited: Mar 26, 2015
    Hi Mollie Mae, you are fine and everything will be ok but different. You are right, the grieving process has to be allowed to run its course, I'm still grieving one year on, in a way I won't stop but a year on I'm remembering who they were before the illness, I don't think anyone can understand, it's having somebody slide away and you can't grab hold of their hands and pull them back. When they were ill I accepted that they would never come back and that the only solution was death and that was both natural and also inevitable (they were 85 and 91) Certainly for a while afterwards I was shocked (you probably are at the moment) after so much time they went in less than 48 hrs. Sometimes for me it was easiest when I was around strangers, friends and family always feel they have to either judge or feel pity, strangers just accept me at face value, if I told them about my parents they'd be sympathetic and try and empathise, if not they'd view me as a miserable cow, either way it was ok. But every day is difficult and moving on (prefer to think of it as rebuilding, realising and finding dreams) sometimes feels like an uphill slog, that's ok though, the sun still shines
    I have been seeing a solution focused hypnotherapist since September, not counselling, for me I'd spent too much time thinking and I needed help to move my life into more comfortable times and let my mind recover, really it's just a series of strategies that encourage positivity. Not my natural state but has given me a chance to recover emotionally, there will be one in your area, preferably a trainee as you'll get a very healthy discount.
    Re work, you do need time to recover, speak to the doctor and see if they can sign you off for a while, time is good. Reflect, you're an intelligent woman, where do you want to go?
    Good luck and masses of love
    Sally xxx
  7. MirandaT

    MirandaT Registered User

    Jul 19, 2010
    Give yourself as much time as you need, take each day as it comes and go easy on yourself. Yes, there will be things that need sorting out and that can't be avoided, but prioritise the important things and don't try and do too much. It's five months since my mum died and while I look like I'm doing fine, inside there's lots of little broken pieces. My sister has been really depressed since too. But we keep going day by day and the healing process is happening. Dementia, and it's aftermath, is such a big thing to deal with.
  8. WIFE

    WIFE Registered User

    May 23, 2014
    Be kind to yourself - MollieMae - death is confusing whoever it is and you will find that in time you will feel calmer about your Mum and more able to understand her passing. Dementia is such a cruel way for someone to end their life but try to dwell on the happier times you had with her and cry for her if you need to. Shows you loved her. It will get easier. WIFE
  9. MollyMae23

    MollyMae23 Registered User

    Jan 7, 2012
    This forum is fabulous. I think much of the pain of seeing a loved one suffer from dementia and then accepting their death is that you feel and often rightly that no one you know understands how you feel. I look on this forum or post one of my epic posts and I can feel the comfort being expressed by others who know how I feel. Thank you so much. One of the things that has upset me since mum passed is the general attitude of family and friends of, OkAy she's gone, she's no longer suffering, let's all rush through the funeral bit and get on with our lives. This is all acceptable I suppose, we can't be in mum back and wouldn't want to.if she had to suffer more but.... the pain of moving on without giving the lost loved one a second thought is what so many of you have talked about and what has divided me from grieving with my family who think I am wallowing. But as you all make clear grieving is a long process because of the love felt for mum. I know she wouldn't have wanted to live the life she was living, I know now at peace, I saw the Chapel of Rest but that doesn't stop the the hurt does it?

    Thank you so much for your support and understanding I hope everyone that reads and posts gets the same feeling of compassionate understanding I do and I promise whenever I can I will return it. Losing a loved one is hard but as we all know, losing someone to dementia and then losing them totally to death is devastating.
  10. Sweet

    Sweet Registered User

    Jun 16, 2014
    Thank you for your post Molly Mae...I find it helpful.. totally empathise.
    My mum passed away in January.. I sort of manage some days.. When I'm distracted, trying not to think...but that's tiring too!... Today just crying, just a longing to see her...the well mum or the dementia mum! I was home alone, not at work and couldn't help myself. I feel that in other peoples company, they think she was 92 ,this is what happens.... She's not ill anymore...but it's much harder than I could have imagined.
    I feel better after reading all what's been said here. A sort of relief that other people feel the thank you.
    Sweet x
  11. chrisdee

    chrisdee Registered User

    Nov 23, 2014
    My heart goes out to you. My Mum died three weeks ago too, perhaps I'm not so on my own but really just brother and I to see it through. Somehow, its a different death with dementia, and its hard to get those last days and weeks out of your head. Please don't expect to feel any better until you do - who know how long this takes? take comfort in the fact that many of us, right now, on this forum are going through just the same rollercoaster of emotions, one day ok, next day sad and grieving. The suggestion of alternative therapy sounds a good idea to me. Also think this dreadful cold weather is not help either. Please be kind to yourself.
  12. tinap

    tinap Registered User

    Nov 2, 2014
    west midlands
    My heart goes out to you all for your loss.
    I just wanted to say take time to grieve if you want to cry then cry Mollymae it was your mom people mean well and I'm sure they only mean the best for you but nothing is more personal than the love you have for your mom I say have not had because you will always love her and she will always be with you, it makes no difference what age they are when we loose them it hurts just as much at any age
    Its not wallowing its still raw and its important to grieve to not allow yourself the time you need will make you ill. No one can put a time on how long it takes but there is no rush one day at a time you will get there.
  13. fizzie

    fizzie Registered User

    Jul 20, 2011
    I understand exactly where you are coming from. I am 3 months on after losing my Mum and 18 months from losing my husband. When you said you were grieving 2 mums I felt as one with you, it is so hard to explain and you said it beautifully.

    Everyone is so different but everyone I have spoken to has told me that they feel guilty and so I think we are 'normal'.

    Work was a saviour for me, it was my time to be 'me'. Some people find that a hard place to be but I only work part time (3days) and it helped me through. I also went/am going to group bereavement sessions and I find them very helpful because everyone is at different stages. You might find it helpful

    The biggest thing for me is that I don't take any notice at all of when people say how long it takes. It takes as long as it takes for you and every single day (every hour in the first few months) is different.

    Talking Point is also a great place to be. We are all 'on your side' and feeling your pain.

    Take care, thinking of you
  14. catbells

    catbells Registered User

    Jun 14, 2010
    Hello MollyMae

    My heartfelt thoughts go out to you Molly. I lost Mum on Mother`s Day - and her funeral is tomorrow.
    I saw Mum every day since she move nearby, then as she went into care every day again even latterly being proactive in her care, felt I was doing something to contribute.
    I believe you gain strength when you really need it and that comes forth at such times.
    A lot depends also what you believe whether there is life after death.
    For me her only child if was a relief. I was with her to the end, what a blessing to give your daughter on Mother`s Day, a meaningful day between mother and child(ren), she gave me a gift, she released me so that I can live my life to the full free of worry, distress, trauma, all of which we had both gone through together. I affectinately call it "walking the path together...."
    Yes I was terribly distraught during the first week, trying to take it in, last week a little better as we as a family planned her service for tomorrow. After tomorrow, I take a day at a time. Spring is here, new life, new life for Mum, new life for me and my husband too. I can only suggest try to live in the "now" advice given to me sometime agao, which helped me keep strong for Mum. Take a day at a time, think only of the good memories, file away the trauma of the past, give yourself time to reflect and recover, its been a long road for all of us caring for our loved ones. Spring is here. reevaluate your life positively. Think about what you really what to do and get out of life. Your Mum, like most Mum`s wouldn`t want you to suffer, and yes grief is terrible, it will come and go, let the tears flow, shout and scream, it can takes years, we never forget those we love.
    I hope my message reaches out to you, be positive. Mum isn`t suffering now, spring is here, new life.....don`t feel guilty, you are a good daughter, you have no regrets.
    It`s very early days as is mine, but try to treat yourself everyday with a little something, Do you have a garden? Plant something in rememberance of you Mum, her favourite flower etc.
    I will feel it too after Easter and I will take a day at a time. Reality takes time to kick in, but I have a beautiful garden in which to shed my tears if and when they come and rememeber the good times.

    Heather x
  15. jude50

    jude50 Registered User

    Dec 28, 2011
    Hello MollyMae. Firstly can I say that I am so sorry for your loss and your feelings at this difficult time. I too was a carer for my Mum. I lived with her and cared for her but somehow managed to work full time as well with help from social services and a local day care centre Mum went to on a Monday to Friday.

    My Mum died in July 2012. I was with her in hospital waiting for my brother and sister to arrive but as it was normally it was just me and Mum alone on a Sunday morning with the radio on and that last hour of her life I talked to her and held her hand and told her I loved her. She was unconscious but she squeezed my hand so I knew she could hear me and it was then I told her that if she was tired and it was all too much she was to go and I would be fine. She died within half an hour of that.

    At first I was a lost soul, I didn't know what to do with my life or my time. It had been so filled up with the caring and everything else it entailed that I had nothing left for anything for me. But as time went on things gradually changed. I met a gentleman friend a few months after Mum died who I saw for about a year which got me into the habit of going out and socialising, it was an interim relationship not meant to last if you see what I mean. But now nearly three years later I am contented. I have met someone who means the world to me and me to him and I am engaged at the age of 53. I still miss my Mum like mad. I talk to B about her and I still get upset but I miss her not the dementia and it is easier.

    So what I am trying to say is be kind to yourself. It is still relatively soon after your Mum has gone, you are still so raw with the emotions of it all but it will become easier and you will know the times to make small steps forward in a future for yourself. Don't feel pressurised by others, do it in your own way. You will always love your Mum but it is time now to start loving yourself.

    Everything will be fine, I promise.
  16. Dunkjt74

    Dunkjt74 Registered User

    Jan 21, 2010
    The heart of England
    Hello MollyMae.

    I know that my comments won't help you feel any different, but I can really empathise with you. You do have my sincere condolences and sympathy.

    My Mum passed away on March 16th this year.

    I'm not going to say or even hazard a guess at what you're feeling right now, but I will let you know how I'm feeling right now, and it may help to let you realise that you're not on your own.
    My Mum was diagnosed with dementia in 2011. During the process, I had to deal with several issues caused by a sibling relating to Mum that added to the anguish that already existed.
    Over the years, it was painful for all involved. Mum, initially, couldn't understand why she was in a care home. So, to see her each time, and have her asking when she could go home was hard.
    As her illness progressed, and she started slipping further and further away, that's when it really started to hit me.
    I didn't live in the area where she was being cared for, and was only able to get up to see her every couple of weeks. Because of that gap and because I used to attend from work on my own, I could see the difference in my Mum's condition and it used to knock me for six, to the extent that I struggled to stay with her for more than an hour or so.

    Because of that, I felt guilt. But, at the same time, I didn't want Mum to see me crying or getting upset. So it really was a bit of a catch 22 situation.
    With our case, I knew that she was being very well looked after by the home, and also had the knowledge and comfort that she was being visited regularly by other more local family.

    As Mum deteriorated further, I didn't think that it would be possible, but I found it even harder to see her, although I did continue to see her.

    Just before Christmas 2014, she fell ill with an infection. And it was then that I noticed that her "spark" had all but disappeared and I had a distinct feeling that she wouldn't be with us for much longer.

    When she finally passed away, like you, I did (and still do) have very mixed emotions.

    With myself, I know that I had a great life with Mum before her illness, and up until the last three or four months, I had the honour of still being able to make my Mum laugh. Those memories have all helped massively!

    My first feelings and emotions were of immense relief for her, because I knew that she would no longer be suffering. I also have the belief that she is now with others that she loves.

    I was VERY surprised at how little grief I actually felt, and even asked my wife whether or not I was "normal" because of that!!!

    However, after thinking about everything, I realised that I had said my goodbyes to my Mum over a long period of time. I had been grieving for her pretty much none stop since she was first diagnosed with this most cruel of illnesses and also when it began to really take hold of her.

    All that was left in me after she passed away, I discovered, was plain & simple sadness.

    Sadness about the fact that such a wonderful person was stricken down with such a cruel illness. Sadness about the fact that she will never meet the grandchild that we're soon going to be bringing into the world. Basically, sadness about everything.

    Everything is still very raw with me, however, I feel that already I am slowly moving on.

    Basically, I think that what I'm trying to say to you, is that there is no right or wrong way to feel. There is no timescale that you should place on your feelings can have.

    With my Mum, I know full well that she'd punch me on one of my arms and call me a "narna" if I let her death drag me down too much. So, I'm going to remember our happy times together before the illness and also the (what I call) "magic times" when she'd have a lucid moment during her illness and see me actually as "me".

    I would like to think that your Mum would be of the same ilk and would wish that she is remembered for who she was, not the resultant sadness that her condition brought.

    One thing that I am aiming to do very soon, is to make a DVD containing lots of photographs of Mum and the family and have them showing to some of Mum's favourite music. That way, not only will I be able to remind myself of all of the happy times that we all had as I make the disk, but I also know full well that I'll be able to smile as I'm making it.

    My Mum's funeral is next week.

    MollyMae, never stop smiling & please do your best to keep strong.

    Kindest regards.

  17. chrissiegreen

    chrissiegreen Registered User

    Apr 1, 2012

    dear Mollie my mother passed away in 2011 since then I have felt an overwhelming sense of loss, I reason with myself by saying "why wouldn't I feel this way after all my mother was with me all my life" - my mother told me how I was when I was born, how beautiful I was, my mother cycled 12 miles every Sunday to see my when I was tiny, my mother held my hand, wiped my tears, bathed my cuts and applauded my successes. My mother taught me how to do so much and most of all she taught me how to love. I feel her with me now and she is with me now in almost everything I do. My shining light. Grief has as many shapes as a snowflake and we learn how to live with out that part of us that has been amputated by the loss - take your grief day by day, and be courageous and brave X
  18. Highstreet

    Highstreet Registered User

    Nov 14, 2014
    Sharing your loss.

    To understand my father better I enrolled in a dementia care course. This has helped me to process my journey and in turn I have been able to help others. Out of sadness can come positive actions. Time does help and you can only take each day as it comes. When you feel overwhelmed and you are unable to move forward allow yourself to grieve. It is ok to have time to yourself and have that cry and to even feel helpless. Just remind yourself that this to will pass. Pick yourself up and do something pleasant. Keep busy and consider others, as this will help you in the long run. Hope this helps. C
  19. worriedcarer

    worriedcarer Registered User

    Feb 24, 2009
    dealing with the grief

    I am so sorry and I share your pain. You are not being dramatic. My Mum died last June and I am still completely grief stricken which still doesn't appear to be easing. Like you I am still crying for the loss of my Mum and, like you, because she was so dependent on me I still feel completely lost. I read somewhere that grief will take it's normal path with acceptance following on from anger, sorrow and so on.
    It probably is wise to chase up the council to transfer the tenancy to your name. When all our actions are completely focused on the needs of someone else we can, and our needs, can also get lost in there and we feel stuck. I think the grief is very normal, I'm sure mine is also. only those of us who have carried out the role reversal in caring for someone would understand the feeling of double loss. Take care and best wishes
  20. vinvin

    vinvin Registered User

    Mar 9, 2012
    I lost my Mum 15 months ago and I wish I could just remember the Mum pre dementia there are still times I wake in the night and think about what the dementia did to her mind and how my son was so upset because his beloved Nan didn't know who he was just that he was a "lovely boy". As others have said everyone takes their own time to get over a loved one's death and you can only do things at your own pace. I still find special dates very difficult too.
    My thoughts are with you good luck on your own personal road. x

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