emptiness

Discussion in 'After dementia — dealing with loss' started by lambchop, Mar 13, 2018.

  1. lambchop

    lambchop Registered User

    Nov 18, 2011
    112
    Hi,

    My poor mum died in October last year. She was 81 and had suffered for the majority of her life it seems - she had schizophrenia for a very, very long time, was blind, and then, in 2010, had a stroke and ended up with vascular dementia. The last 7 seven years were the hardest in my life; schizophrenia was a walk in the park compared to dementia. I, along with dad, cared for mum all our lives. My father died in 2010 so I was her sole carer until 2017 when she died (I have no other family).

    I thought things were intolerable when my dad died; but this is something else. I know this is a common theme but the flat is empty, the carers disappeared, a couple of friends have disappared and, most importantly, my role has gone. I cared for my mum for so long, I feel nothing has meaning anymore. I do whatever I can to fill in the days but it's all just meaningless. Yes, it's early days but does anyone else have similar feelings? I have counselling and this helps as it's the only place I can talk about my beautiful mum in detail.

    Though mum suffered, she was also happy for most of her life too and I am so thankful for that and thankful that we were able to look after her.

    A friend suggested I get a dog or foster a child! Both, for me, are not feasible in any way. I cannot just replace my mum with someone or something else to care for. I also do not want to go into care work (another suggestion). I can't make sense of what's happened and I'm upset with mum for leaving me, though I know, of course, that it is not her fault.

    I couldn't imagine living without mum in my life and now I have no choice.
     
  2. worried2

    worried2 Registered User

    Aug 1, 2010
    27
    Hi,
    It sounds as if you have been a wonderful carer for your mum. Like you I have recently lost my dear mum and it feels so strange after all this time as a carer not having that focus. It somehow feels wrong to have 'me time' and hard to know how to fill it. Maybe start to pick up some of the hobbies and things you enjoyed before. Maybe help out with some voluntary work. As you say, it's early days and having been a carer for so long it's going to take time to adjust. Take care of yourself Xx
     
  3. Greyone

    Greyone Registered User

    Sep 11, 2013
    366
    Male
    Cheshire
    HI. I was just passing by and thought I must say a few things. You and your father were undoubtedly devoted and very special people for your mother and you were later for your father. as well as counselling you have come to the right place for company and support.
    I hope you get out of your flat on a daily basis to shop and walk locally at least. Talking with local people will help you because I now being in alone all day can be very lonely.

    I hope it is only a couple of your friends that have disappeared and you have a few more, neighbours to speak to and I hope you have some other family you can at least phone.

    I hope that your counsellor is helping you think about the future and one day soon a job. I am finding out that careers have come along way in the last 30 years so hopefully, with your counsellor, you'll be able to decide what excites and inspires you and one day maybe "what makes your heart sing". Maybe now thinking about your future is something which can break up the sad times when you think about your beloved parents.
     
  4. DeMartin

    DeMartin Registered User

    Jul 4, 2017
    653
    Kent
    Volunteering is a good time occupying ploy, there’s a website that you input your post code and it will list available places in your location. There’s a very mixed bunch, tree planting, food banks charity shops, all will bring you into contact with people. If you craft, knit etc check with your library they often have knit and natter groups , usually low on knitting done but high on natter.
    It may take a while to find a perfect fit but getting out and meeting others is the real purpose.
     
  5. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    3,275
    Kent
    Yes many of us feel that emptiness even though our lives are still filled with things to do. After such an intense and long caring role where every waking hour of the day and sometimes sleepless nights are filled with the needs of our pwd it takes time to adjust and to find ourselves motivated to do the things we never had time for or find the inclination to do them. It has been a year since dad died and I am only now starting to properly adjust and part of that is because I know deep down having given 4 years to caring willingly for my dad he and mum who died 4 years ago would want me to try and enjoy my remaining years. Replace friends who disappear by joining a group in whatever activity may interest you and it is possible bizarrely that you miss the caring role of being needed and purposeful so perhaps volunteering may help adjust.
     
  6. Cybersis

    Cybersis Registered User

    Nov 7, 2017
    10
    Female
    I lost my momma in October 2017 too. She was 84. I can certainly relate to the empty feelings you are having. Also, I have the feelings that everything is meaningless. The daily sadness is over whelming. I suppose this is the grief process, and we have to give ourselves time. I saw my mother every day of my life. I do have a full time job, so my day is filled. However, I still feel sad and my momma is on my mind throughout the day. Unlike your mother, my momma’s illness was rapid. She got confused in May and we lost her in October. You are not alone in your feelings. Take care.
     
  7. lambchop

    lambchop Registered User

    Nov 18, 2011
    112
    To everyone who has kindly replied, thank you so much. Thank you for making me feel that I'm not alone. Thank you for sharing your stories and your pain. I am so sorry to each one of you who has lost someone and I hope we can find a way out of this 'hell'. Thank you for all your suggestions, all of which are excellent.

    I do voluntary work and I visit an elderly ex-neighbour regularly and I do try and see people but, all I want is my mum back and nothing else is important. I feel so useless, so unimportant now. I am trying to look for paid work but I feel such a lack of enthusiasm for it. I don't know how other carers, who look for work, cope or find work.

    I know I'm exhuasted from the caring, from the grieving and, as many people have said to me, we, carers, need to be kind to ourselves. But having put someone else first for so many years, it's incredibly hard to care about myself.

    It's so hard - to watch someone suffer from dementia, to do everything we can to look after them, then to try and live without them and feel the hellish pain of grief. They said that the pain you feel is equal to the love you felt for that person - well this is a howling, unrelenting pain and it's cruel.

    Thank you so much for your replies. x
     
  8. Greyone

    Greyone Registered User

    Sep 11, 2013
    366
    Male
    Cheshire
    If you have not tried them already, consider Cruse Bereavement Care https://www.cruse.org.uk/bereavement-services/get-help
    on freephone on 0808 808 1677.
    The helpline is open Monday-Friday 9.30-5pm (excluding bank holidays), with extended hours on Tuesday, Wednesday and Thursday evenings, when we’re open until 8 pm.

    I personally recommend them and I have spoken to them twice to date and found them excelent

    or The Samaritans https://www.samaritans.org/how-we-can-help-you/contact-us.

    Whatever you're going through, call us free anytime, from any phone on 116 123.
    We're here round the clock, 24 hours a day, 365 days a year. If you need a response immediately, it's best to call us on the phone. This number is FREE to call.

    Good luck, take care and don't forget - we'll be here.
     
  9. lambchop

    lambchop Registered User

    Nov 18, 2011
    112
    Thank you Greyone - I have tried both avenues and I am having face to face counselling.
     
  10. DeMartin

    DeMartin Registered User

    Jul 4, 2017
    653
    Kent
    Counselling can be a positive experience, I had terrible feeling s of guilt over my father going into care (I had broken my arm and was unable to keep visiting) The councillor led me to accept that I had done all I could, and it was advancing dementia, not my “neglect “ that caused dad to go into a home. Where, I might add, he settled and lost all his anxiety and stress.
     
  11. Greyone

    Greyone Registered User

    Sep 11, 2013
    366
    Male
    Cheshire
    <smiley face and thumbs up>
     
  12. lambchop

    lambchop Registered User

    Nov 18, 2011
    112
    Hi Greyone, I'm so glad counselling benefitted you - grieving is hard enough without the punishing guilt that automatically comes with it (like an unwanted gift). And I hope your arm mended in good time.
     
  13. lambchop

    lambchop Registered User

    Nov 18, 2011
    112
    i just wanted to have a short rant :

    I HATE EVERYTHING since mum has gone. I hate nature for always being there - it comes and goes and is always there (unlike my parents who have gone). I hate having to interact with people who I wouldn't have met had it not been for my mum dying. I hate having all this time to myself and filling it in with stuff that means nothing. I hate people saying ridiculous platitudes or suggesting I take anti depressants to help the grief. And most of all - I HATE DEMENTIA

    Hate rant over.....
     
  14. Greyone

    Greyone Registered User

    Sep 11, 2013
    366
    Male
    Cheshire
    Hi Lambchop, I don't blame you. I usually do that on the days I'm in tears because normally I cant work up enough energy to it on a good day when I'm calm. I've managed to avoid AD's so far so I hope they are helping you. At the moment, my favourite rant is about how do I get better because I have got past acceptance and have two final things as part of letting go.
    My biggest gripe is that there seems to be so little help with grieving despite that amount that has been done since time began.

    I think you are doing fine. I have just read such a lovely posting you made earlier on about losing a loved one. Take care.
     
  15. lambchop

    lambchop Registered User

    Nov 18, 2011
    112
    Hi Greyone,

    Thanks for another kind reply. I wouldn't worry about 'stages' and where you think you should be or how to get there. Unless you can't get out of bed and do anything at all, I say, 'let it be'. You are right about grief and knowledge around it, but it is such a personal and individual experience that no-one (observers) can get it right. But people try and fix you because they can't cope with your grief. It can't be fixed by anyone; it can only be lived through and survived, in my opinion.

    You have had counselling, I believe - are you still going to counselling?

    Take care.
     
  16. Greyone

    Greyone Registered User

    Sep 11, 2013
    366
    Male
    Cheshire
    Thank you for asking. I had 5 weekly face-to-face counselling sessions locally, exactly a year ago. A few months ago I had telephone sessions with the Samaritans and Cruse. They both helped me over a bump. I spoke to Cruse again and they advised me how to start talking again to my sister and suggested (and only suggested) that as my sister and I had planned to sell our ( and before that our mothers) house for a long time and that may be preventing me from moving on.

    For some reason, I had developed a negative view of the Samaritans because I once had a troublesome marketing phone call from them. But after I got that out of my head I was very glad that I did call them because it was they who told me about Cruse and beyond doubt they have both helped me greatly.

    You are right about it being personal and individual. I have been surprised when other people often like me: unmarried, without kids and only a sibling have got in touch in TP because of similar backgrounds and emotions. Ya know lambchop, I found it helpful to acknowledge the similarities, especially with sibling relationships.

    Recently I read that The aim is not to get back to normal. It is about understanding how your life has changed and being able to reach a better balance between the good days and bad days. This has helped me to start planning for the future.

    It sounds like you're on the road to self-awareness so I hope you take comfort with patience. The support and kind words that you have been offering to others has been unbelievable. I was deeply moved be a piece of yours I read recently and I hope your sharing has been helping you too.

    Good luck and pop in any time.
     
  17. lambchop

    lambchop Registered User

    Nov 18, 2011
    112
    HI Greyone,

    You are so talented with your words and so generous too - thank you so much.

    I am astonished you have been able to cope at all with only 5 sessions of counselling to begin with but well done for initiating counselling again, albeit with different providers. In the beginning, I called the Samaritans several times and the were helpful most of the time but I found it frustrating speaking to a different person each time. I'm so glad Cruse have been helping you. Do you feel you would like more regular counselling contact - ie face to face - or is the contact you have, enough?

    That quote you gave is so apt and so useful - I appreciate the truth and sensitivity of it.

    There are so many people on Talking Point who are struggling - it just highlights the relentlessness of dementia....it boggles the mind.

    I have a recurrent wish that I could go back in time to when mum and dad were alive and well and i would be there with them. I rarely dream about them but I look at their photos regularly, even though it's so painful. Are you able to look at your family photos?

    Our loved ones have suffered so much in their lives and especially in the throes of dementia, but we were there for them. Thank goodness for us carers - the world would collapse without us. But now we suffer......

    Good luck to you too and everyone else suffering a bereavement - we need it!
     
  18. Greyone

    Greyone Registered User

    Sep 11, 2013
    366
    Male
    Cheshire
    Hi, lambchop,
    Thank you for asking about counselling. I only decided to go for it because one night I came home in tears and decided it was a must. Five was the standard package as part of my last employer's assistance program and it helped me a great deal.

    A few months ago I started to ask myself if I needed more counselling. But I do not have the same strong feelings as I did then, so I decided on The Samaritans and Cruse.

    I was going to say that I wonder why there is no better help for us since so many people have this problem. But on reflection, I think it may be because help is for the very worst cases.

    You are so right about talking point. We are so full of souls needing help and support. I really feel for those that are obviously worse off. But I do gain some satisfaction by trying to comfort them like we do.

    Greyone
     
  19. lambchop

    lambchop Registered User

    Nov 18, 2011
    112
    #19 lambchop, Mar 24, 2018
    Last edited: Mar 24, 2018
    HI Greyone,

    I hope you are coping with the pain much better than at the beginning - it sounds as if you might be.

    I was looking for other carers who miss their caring role once their loved one had gone. I miss mum so much and this void now is unbelievable. Other things I do fill in the time but are meaningless. So many people say 'time is a great healer'. Honestly, I know people mean well, but please don't say that to a recently bereaved person.

    You are right that if we can help anyone on this forum, it's a really good thing, and some of the stories can be so horrendous, but all I think, when I read the stories, is I wish I was looking after mum again.....

    I would just say to any carers here, you never know what's round the corner. Tell your loved ones you love them every day you can; take photos of them; keep a record of the good memories and say sorry for anything you regret while your loved ones are still with you. If you can, keep or try and build some kind of life whilst you're a carer, so you have something to go back to when your caring role is over - you will really need it. And ask, ask, ask for help.
     
  20. Greyone

    Greyone Registered User

    Sep 11, 2013
    366
    Male
    Cheshire
    Hi Lambchop

    I have to agree wholeheartedly with what you say in your final paragraph. And I cannot add or improve on it.

    All of my fondest memories are centred around the times we spent together and I was so grateful that I could concentrate all my spare energies on mum. It's amazing how much love comes back to you when I think back to all those simple times sharing lunch, walking in the garden, talking of family...too many to remember.

    One day when I felt I was in bad place I was about to post a tearful question when I noticed someone was clearly in a worse state than me so I had to join in and you know what, it did make a difference and me feel better reading some very bad stores always reminds me with relief and gratitude that my load was far lighter than most peoples. To some people who say "you have to laugh or you'd cry "I have to say "NO". I only felt my sadness unbearable once when my mum said to me "You can go now I've got plenty to do" and her task was to push a folded wheelchair from one end of the corridor to the other. Not a laughing matter.

    When my mum passed away, I almost decided it was enough for TP and it was only because I wanted to try to help others and find myself still needing help. I think what I want is some way to stay involved and help support others that follow in our footsteps, maybe like this...

    Today though I have had a very enjoyable day. My sadness and tears this morning gave me the impetus to visit my mum. On the way, I bumped into people from the Canal and River Trust. Something I could take an interest in and I stood talking to them about their volunteering and their work. Nothing especially to do with my mum or dementia but she loved the canals and walkways and the country so at some point int he future I will think about taking an interest.

    After a day like today and the coming weekend, without forgetting to look back and in, I feel a need for my own good to look forward and out and days like today have helped me do that when two complete strangers passionate about such things impress me so much.

    What about you lambchop, I know you will never forget but do you have plans for the future?
     

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