I feel lost….

[MowgliGirl02]

I lost my mom on Mothering Sunday this year. We’ve been joined at the hip my whole life, She was more than my mother, she was my best friend and support system. I was there when she received the mixed dementia diagnosis, I was there through every stage of the dementia journey, I cared for her with pleasure, that was my job. Was it hard? Yes. But I wouldn’t have changed it. I was there to watch her die, and I was there when the curtains closed at the crematorium.
But what do I do now?
I miss her so much, I miss everything that was us. I miss everything that was her.
My grief hits me more at night, and I cry myself to sleep.
I know I’m only just at the start of my grief journey. But I’m so lost. I don’t know what to do.

 

[Kevinl]

It's lonely, it's hard, no wife or mum anymore for me. Maybe as a man I feel less vulnerable when I now go out alone, maybe lovely next door neighbours telling when I'm going shopping or to work, help out measuring up and quoting jobs mainly.
Were I to be female would half of that interaction have taken place,never know.
Today was sanding down skirting boards with his little sister while he went off getting paint and stuff.
While I'm happy being made to feel being useful helped/is helping me move on pure purposeless of life alone. Have you thought about doing some voluntary work, anything to get you back out there.
As I say maybe easier for a man to do than a woman, no disrespect intended, getting dragged round a supermarket by Mrs nextdoor and the kids, or indeed him maybe I just feel more comfortable as a man. K

 

[canary]

((((((((((((((((((((((((hugs))))))))))))))))))) @MowgliGirl02

I think the grief is worse after the funeral. Before then there are things to do and organise, people to inform and decisions to make. Its hard but it gets you through.
After the funeral, there is nothing, just a big void

Dont worry that you dont know what to do. The time has come to just be. Be gentle with yourself, dont expect too much of yourself and give yourself space to grieve
xxx

 

[Whisperer]

I lost my mom on Mothering Sunday this year. We’ve been joined at the hip my whole life, She was more than my mother, she was my best friend and support system. I was there when she received the mixed dementia diagnosis, I was there through every stage of the dementia journey, I cared for her with pleasure, that was my job. Was it hard? Yes. But I wouldn’t have changed it. I was there to watch her die, and I was there when the curtains closed at the crematorium.
But what do I do now?
I miss her so much, I miss everything that was us. I miss everything that was her.
My grief hits me more at night, and I cry myself to sleep.
I know I’m only just at the start of my grief journey. But I’m so lost. I don’t know what to do.

Dear @MowgliGirl02

I could not read your thread and just walk on by. So much of what you said resonated with my own caring background. I cared for mum for the best part of seven years, the last during COVID lockdowns and restrictions making it harder. Mum was my best buddie, friend, supporter, confidant, etc, with all those things going both ways. When she died I felt utterly lost. We know Dementia ends only one way, but I was so tied up in the caring role I had lost sight of the inevitable last destination point. Crazy but true. I can have some understanding of your feelings, but also accept that each grief path is different and very personal. I offer some points to try and help you. Make of them what you will, but please accept they are from a well meaning stranger, with no detailed knowledge of your circumstances eg support from family, friends, etc.

1) Please try to ensure you keep the basics going. Make sure you eat good healthy food, rest even if sleep might be broken. There is the old saying you cannot care for someone if your energy tank is empty. Please accept now that you still have a caring role, only now it is aimed at yourself not your dear mum. After years of caring I found it hard initially to accept that I needed to start thinking about myself, as the first priority in life. Not in a selfish way but in a loving and caring way. We sacrifice our own interests to varying degrees in a caring role, so that process has to be reactivated.
2) That self care reaches beyond the physical into what I call spiritual for the want of a better neutral word. Let me offer examples that might better explain what I am meaning. Yes the night time is hardest. No day light, no activity to distract the mind. I imagine just a stream of thoughts and memories about your much loved mum. I found physical connections helped me, though it took time. Mum slept with a teddy bear she much loved. He moved into my bed. During her last year I helped mum put on her wrist watch each morning, as she could no longer work out how to latch the strap. I placed it on my dressing table. Sometimes when sleep was a hopeless dream I sat up in bed and held it. I remembered my caring role, the problems I overcame, those that beat me, but most of all how it demonstrated my love for mum and how close we were. I put a pair of her shoes where I could see them when I got out of bed. I thought let me walk in her steps today, share her values, remember our love. These little things kept mum present spiritually and positively for me and overtime I developed a different relationship with her. I cannot hold her hand any more, hear her laughter, but I can hold and cherish my memories, respect and live by our shared values. Remember her old sayings. Early on the grief path these things can be painful, but over time I could remember mum without tears. Now certain memories bring laughter and joy in my heart, but that took time.
3) Many people offer well meant advice (me today I am asking myself?) but it can be hurtful. When received accept it as well meaning but recognise it only has value in terms of how you perceive it.
A) Its your time now. That can sound like your caring role has no on going value, The loss of it creates a very large hole in your life and unfortunately more time to reflect of your grief. Please take time to reflect on the sacrifices you made in your caring role. Yes done out of love, but worthy of being remembered by yourself.
B) The worst of all you need to move on now, get a new life, etc. At one level it is true but that will be a future day. Today and in the early stages of your grief you need to reflect on what has happened in the last few years. Your life has fundamentally changed in away third party well wishes very rarely understand, having not experienced a lengthy, demanding caring role and then loss of the loved one. Be gentle with yourself. Grief is very unpleasant and you need time to reflect on your loss, your mum and the caring role. There will be a need to think towards the future, but not I suggest kindly this early in your grief. Allow yourself time to grief, slowly heal, gradually move back into the full on world.

If you have any close friends or family please talk to them about your mum. I had no one to talk to, lockdown restrictions made social contact very hard. Talking can really help if the person involved shares some of your memories. Your love for your mum shines through in your post. I suggest your mum touched other people in special ways as well.

I could say a lot more but the above hopefully can help in a small way. One last but crucial point. I know it seems hard to believe at present with waves of intense grief crashing over you, but they do ease with time. I am left with a sense of being incomplete, I must admit three years on to feeling lonely when on my own. I suggest a background feeling of loss and sadness will always lurk after we recover from an intense loss. Please remember these feelings are the price we pay for having known and loved someone special. Was my life the better for having known and loved my mum. You bet. Do I have special memories. Am I a better person for having had that special relationship. Yes to both. Will what I learnt from my loved one help me live my life, do the right thing, rejoice in life going forward. Yes. This might not make any sense right now, but please hold onto it and one day I very much hope it will. Terrible as the pain of grief is I now see that it reflected just how special was my relationship to my mum. I look back and see it as something I had to process slowly and in an individual way. Such a huge loss has an a large impact.

I sincerely hope any of my comments or suggestions can help you. My intentions are good but how they land only you will know. That was one of my dear mum’s old sayings. I close in wishing you well. Please continue to post here, in a friendly, welcoming and supportive forum.

 

[MowgliGirl02]

@Whisperer Thank you. ❤️ I have only got a quarter of the way down and I’m crying, but not in a bad way! My mum was my world, and she was amazing in every way. If I turn out even half the way she was then I’ll be proud. I will read it all, and take it in. I promise. But for now just Thank you for the reply and spending the time to write that for me. I appreciate it.
I don’t think there will be a time I leave this forum now, because it helped me when she was with me, I’m sure it will help me now I’m alone.
And if I can help other’s then that’s a bonus, and a blessing.
Thank you. @canary and @Kevinl ❤️

 

[Whisperer]

Dear @MowgliGirl02

You are more than welcome. We are both ex carers of mums we deeply loved. Funny when I read your post it just very much resonated with me, where I was early February 2021. I remember my intense grief period. Having come through it I promised myself I would help where I could and not walk on by. It took a lengthy period to come to terms with my loss but please just accept it will ease.

Now I see the shoes, remember the special memories and try to honour the promise I made to myself. I have a deep fear Dementia will one day come for me. But now I say to hell with you old enemy and look it directly in the eye. I recently became a volunteer with a weekly care support group. I use to be in one to get advice, guidance and support with other carers. Now I entertain loved ones with Dementia whilst the carers get a few hours break and support. We play Dominos with various levels of support given by the volunteers. Additionally I am a telephone befriender for the elderly, some of whom have experienced recent loss. Each grief journey is different but I try to help where I can, listening being the best thing I can do.

Three years ago if you had told me the above it would have seen a distant prospect. Please hold onto your cherished memories of your mum, your shared values, etc, and they will help guide you as you move forward in life. Today is very wet. I work nights a few days a week in a supermarket. At about 6AM Sunday morning, I was pulling two rollers of sandwiches down to the front of store to put out and went by the big glass front doors. The sun was shining brightly, there was warmth through the glass. Spring is with us. It made me feel glad to be a live. Before my caring role I would not have noticed. As my grandad said nought in life is wasted. I am sure you learned a lot as well. Take your time, pick yourself up slowly, then decide what you want to do, not what others tell you to do. Step to the music you hear.

best wishes and glad to have hopefully done some good.

 

[Roman223]

Dear @MowgliGirl02

You are more than welcome. We are both ex carers of mums we deeply loved. Funny when I read your post it just very much resonated with me, where I was early February 2021. I remember my intense grief period. Having come through it I promised myself I would help where I could and not walk on by. It took a lengthy period to come to terms with my loss but please just accept it will ease.

Now I see the shoes, remember the special memories and try to honour the promise I made to myself. I have a deep fear Dementia will one day come for me. But now I say to hell with you old enemy and look it directly in the eye. I recently became a volunteer with a weekly care support group. I use to be in one to get advice, guidance and support with other carers. Now I entertain loved ones with Dementia whilst the carers get a few hours break and support. We play Dominos with various levels of support given by the volunteers. Additionally I am a telephone befriender for the elderly, some of whom have experienced recent loss. Each grief journey is different but I try to help where I can, listening being the best thing I can do.

Three years ago if you had told me the above it would have seen a distant prospect. Please hold onto your cherished memories of your mum, your shared values, etc, and they will help guide you as you move forward in life. Today is very wet. I work nights a few days a week in a supermarket. At about 6AM Sunday morning, I was pulling two rollers of sandwiches down to the front of store to put out and went by the big glass front doors. The sun was shining brightly, there was warmth through the glass. Spring is with us. It made me feel glad to be a live. Before my caring role I would not have noticed. As my grandad said nought in life is wasted. I am sure you learned a lot as well. Take your time, pick yourself up slowly, then decide what you want to do, not what others tell you to do. Step to the music you hear.

best wishes and glad to have hopefully done some good.

Whisperer: having just read your threads. You do write some very helpful memorable words, as I remember you did for me when I lost my mum 18 months ago. Keep writing and helping. Just reading your replies here it makes you think about your caring role and how it made you feel. Best wishes.

 

[Whisperer]

Dear @Roman223 thank you for your kind words. I hope you are moving forward in your life after the loss of your mum. I will be a lurker on this site and if I see someone struggling, particularly with grief after the death of a loved one, I will post and try to offer support and encouragement. A small way to give something back to this forum, which helped me so much since my caring role started and then after mum’s death. What I mean is not the forum but the people who use it. A club none of us would want to join, preferring our loved ones to never have been afflicted with Dementia. That said the members are very supportive of each other. I close in wishing you the very best for the future.

 

[Roman223]

Dear @Roman223 thank you for your kind words. I hope you are moving forward in your life after the loss of your mum. I will be a lurker on this site and if I see someone struggling, particularly with grief after the death of a loved one, I will post and try to offer support and encouragement. A small way to give something back to this forum, which helped me so much since my caring role started and then after mum’s death. What I mean is not the forum but the people who use it. A club none of us would want to join, preferring our loved ones to never have been afflicted with Dementia. That said the members are very supportive of each other. I close in wishing you the very best for the future.

Dear Whisperer: I'm not sure I've moved forward yet, or even moved on ... I dealt with everything alone, my mum's illness, visiting mum in hospital, the care home, her death, her funeral, Probate. I've got a sibling but it certainly doesn't feel like it Sometimes, I don't feel I will ever see the light or a life without mum's issues. I feel stuck, and low is the only way to describe it. Looking back the GPS have not helped me in the slightest, it's just been a very long lonely journey. I think I've said this before in posts but if I could I would bring my mum back pre dementia if only to have her a few more years longer knowing what I know now. Thanks for your reply.

 

[Whisperer]

Dear @Roman223 I was sad to read your above comments. I left it for a day to think about if I should reply. I am aware that others can be good at giving advice about “moving on” and “getting a life”, etc. Please accept my comments below are from a well meaning stranger, who is unaware of your full circumstances. I have no wish to cause you any upset, but so much of what you say resonates with my own experiences. Most of the caring for my mum fell on me, but to be fair I said to my siblings they should get on with their lives, visit mum, love her as a mum. Dementia destroys so many lives. I loved mum and accepted the challenges of a caring role would impact on my life. Better one put on indefinite hold rather than three. Caring, medal appointments, two cataract operations, dealing with medical staff apparently sometimes ignorant of Dementia, her death during COVID lockdown, probate, etc.

It has taken me a long time (over three years) to get to where I am now. I still miss mum, have a strange sense of feeling incomplete, now working anti social shifts so yes I feel lonely because very largely I am alone in this world. Below are some of the steps I took to start to recover from my caring role and loss.

1) I used to read fiction and listen to classical music. The caring role took both away from me due to time demands. When mum died I just could not do either. One day about six months ago I sat down and said to myself you used to love these things and you can again. Initially I forced myself to read an hour a day. I selected music pieces I had loved in the past. It took a while but suddenly I was reading well after the hour. I was digging into my CD collection. I just had to force myself to drink from a well which in the past had given me great pleasure. Initially I had felt guilt about enjoying these pleasures, but mum would want me to be happy.
2) A few months ago was the third anniversary of mum’s death. I thought I was doing well but on the day I became deeply upset and for about a week afterwards. I have a blown up picture of mum from 1995 over the mantel piece, holding her recently born grandson. One night I spoke to mum at length. Some people might say I was crazy but it worked for me. For want of a better word I now have a spiritual relationship with mum. I have finally accepted the physical loss. I talk to her picture each morning, giving thanks for the new day. I am developing my volunteering roles. I have continued to add to my log of memories of mum pre Dementia, reading it to remember our good times. Previously after her death my only memories were Dementia ones and that really was not my mum.
3) I write a journal most days. In it I record my gratitude for the good things in my life. Recently that has included spring blossom, new leaves on the trees, spring bird song, lighter evenings, my generally good health, having as I say a new relationship with my old mum. When I have to make a decision I think what would she have done, remember her old sayings, funny times we shared.

Okay as I said the above are suggestions to make of as you will, as mum would have said they will fall as you perceive them no one else. Grief cannot be rushed. Looking back I realise in a strange way it is a healing process. You suffer a deep loss and the mind to a large degree shuts down to protect the individual. The healing process varies in time per individual experiences, it is never a full recovery but you have suffered a major loss, the grim realities of the caring role have changed you in a way non carers never understand fully.

Sorry for the length of this reply but one last point. During grief there are setbacks, which are unpredictable and make it feel like no progress towards healing has been achieved. Allow yourself time. Forcing things will I suggest not help. Small steps are better than big leaps. Like me finally seating down with a book. Your mind is a great protector but sometimes it needs a nudge, when the time is right. Ultimately no matter how many people offer kindly advice, no matter when they do it in relation to the date of your loss, only you can decide when you feel the inner strength to move forward. I close in hoping my words have helped you and maybe anyone else who reads them. Best wishes for the future.