Feeling Lost

[Josiejo]

Hello,
This is where I turn when I don't understand how I feel. Hope that is ok.
Our darling Mum was laid to rest on Tuesday, she is back with my Dad, they are together again.
For some reason I cannot stop going over the last 6 years and feeling sad and angry and thinking that I should have done more. Everyone has been telling us that my Brother & I did everything we could and more and that our parents would be proud....I'm not sure people really understand this disease, in fact some at the funeral said they know very little.....I said that I hope they never have to know.
Everyone at the funeral will remember our Mum before dementia, which is a really good thing. None of them will have to endure the memories that we have.
I guess this is part of the grieving process, it would be lovely to hear from anyone who is going through this or has been on their own journey.
Thanks for reading, my best wishes to everyone,
Josie xx

 

[Hazara8]

Hello,
This is where I turn when I don't understand how I feel. Hope that is ok.
Our darling Mum was laid to rest on Tuesday, she is back with my Dad, they are together again.
For some reason I cannot stop going over the last 6 years and feeling sad and angry and thinking that I should have done more. Everyone has been telling us that my Brother & I did everything we could and more and that our parents would be proud....I'm not sure people really understand this disease, in fact some at the funeral said they know very little.....I said that I hope they never have to know.
Everyone at the funeral will remember our Mum before dementia, which is a really good thing. None of them will have to endure the memories that we have.
I guess this is part of the grieving process, it would be lovely to hear from anyone who is going through this or has been on their own journey.
Thanks for reading, my best wishes to everyone,
Josie xx

Such a short time ago, the Tuesday service with its strangely mixed messages, that sense of loss, combined with the 'normality' of how people talk and are genuinely sympathetic, and yet an almost 'timeless' state in your own heart and mind and the nagging 'guilt' ('.. thinking that I should have done more') and an overall feeling of innate emptiness, as if the world around us is somehow divorced from your own sense of being. These will be feelings you might have. For they reflect my own, at that very same moment after my mother died. She too had been ravaged by dementia. After the funeral, when all the preparation, that wearisome paperwork and the period prior to the actual service - all of that has now passed - things congregate in your mind, you re-live, like a fast-moving film in your head, the events, the moments when you were at your wits end, when your mother was most vulnerable, that time she might have fallen, that moment in the supermarket when she threw a tantrum, the deterioration, the tears, the good days, the sheer depth of despair that you had not ever felt before .... all of that, now finds a place in your mind to question, to challenge you with all the"ifs" and the "buts", "if only I had done ....." and so on. So, what is to be done. Only you know what you have done. Only you know whether there are any 'gaps' in the six years of care, only you know exactly what you were dealing with in essence. People have told you that you HAVE done all that could be done. You and your brother. Why should anyone doubt that? What you, nor ANYONE else can do, is fight dementia. It will always win. Maybe, one day in the future it will no longer be the case. But as things stand, dementia remains a profoundly debilitating disease and when it surfaces in a loved one, that experience - as you and your brother can testify - is exceedingly demanding on all fronts. The process of care, those years, become a 'way of life'. That means it effects you in a fundamental way , deeply so. When things then come to a sudden stop - the loved one dies - that 'way of life' is immediately set at your door, i.e. the physical role one played out, the active role of care, day after day, now ceased, becomes a turmoil in the mind, a re-play - the 'images' of one's loved one constantly inhabiting the mind, at times in such a way you feel like you might actually be able to change things within that re-play.

Cherish all the 'good' moments, of which there will always be some. Cherish the fact that you HAVE cared for a mother, who was so compromised by this disease, that there was no choice for her - nor you and your brothe,r who were there to comfort and offer the best quality of life possible. Because neither of you could eradicate dementia. No one can.

Allow me to say this. When I was at this very moment, after my mother died ( just five weeks off 100 years of age), The 'muddle' in my mind, the regrets, the nagging 'ifs and buts' and all of that, melted away - once I quietly and gently visualised the very last picnic we enjoyed together, alongside a canal, on a sun-filled day. We had laughter and joy. It was perhaps a brief moment in the way of things, but it happened and it cannot ever be eradicated, nor harmed. In that there is both solace and an abiding truth. Dementia, with all its destructive means - could not taint that moment.

You and your bother will have had those 'moments' I am sure. Let them be your 'memories' now.

With warmest god wishes.

 

[Josiejo]

Thank you so much for your lovely reply.
I'm in tears because someone understands.....thank you.

Such a short time ago, the Tuesday service with its strangely mixed messages, that sense of loss, combined with the 'normality' of how people talk and are genuinely sympathetic, and yet an almost 'timeless' state in your own heart and mind and the nagging 'guilt' ('.. thinking that I should have done more') and an overall feeling of innate emptiness, as if the world around us is somehow divorced from your own sense of being. These will be feelings you might have. For they reflect my own, at that very same moment after my mother died. She too had been ravaged by dementia. After the funeral, when all the preparation, that wearisome paperwork and the period prior to the actual service - all of that has now passed - things congregate in your mind, you re-live, like a fast-moving film in your head, the events, the moments when you were at your wits end, when your mother was most vulnerable, that time she might have fallen, that moment in the supermarket when she threw a tantrum, the deterioration, the tears, the good days, the sheer depth of despair that you had not ever felt before .... all of that, now finds a place in your mind to question, to challenge you with all the"ifs" and the "buts", "if only I had done ....." and so on. So, what is to be done. Only you know what you have done. Only you know whether there are any 'gaps' in the six years of care, only you know exactly what you were dealing with in essence. People have told you that you HAVE done all that could be done. You and your brother. Why should anyone doubt that? What you, nor ANYONE else can do, is fight dementia. It will always win. Maybe, one day in the future it will no longer be the case. But as things stand, dementia remains a profoundly debilitating disease and when it surfaces in a loved one, that experience - as you and your brother can testify - is exceedingly demanding on all fronts. The process of care, those years, become a 'way of life'. That means it effects you in a fundamental way , deeply so. When things then come to a sudden stop - the loved one dies - that 'way of life' is immediately set at your door, i.e. the physical role one played out, the active role of care, day after day, now ceased, becomes a turmoil in the mind, a re-play - the 'images' of one's loved one constantly inhabiting the mind, at times in such a way you feel like you might actually be able to change things within that re-play.

Cherish all the 'good' moments, of which there will always be some. Cherish the fact that you HAVE cared for a mother, who was so compromised by this disease, that there was no choice for her - nor you and your brothe,r who were there to comfort and offer the best quality of life possible. Because neither of you could eradicate dementia. No one can.

Allow me to say this. When I was at this very moment, after my mother died ( just five weeks off 100 years of age), The 'muddle' in my mind, the regrets, the nagging 'ifs and buts' and all of that, melted away - once I quietly and gently visualised the very last picnic we enjoyed together, alongside a canal, on a sun-filled day. We had laughter and joy. It was perhaps a brief moment in the way of things, but it happened and it cannot ever be eradicated, nor harmed. In that there is both solace and an abiding truth. Dementia, with all its destructive means - could not taint that moment.

You and your bother will have had those 'moments' I am sure. Let them be your 'memories' now.

With warmest god wishes.

 

[hilaryd]

JosieJo, I've been having very similar feelings about my mum, who died in January, which means that the reply from Hazara8 really resonates with me too. My sisters and I only had about six months of really stressful times, but the sudden change from that intensity to 'normal' life is really hard to handle - multiplying that to your six years is beyond my imagination. I'm sure things will eventually feel better - that's what I'm hoping for myself - and this forum is a huge support and comfort. I guess it just takes time and we have to keep going, be patient, and try anything that might help the process. I've just bitten the bullet today, admitted to myself that I'm not coping too well, and contacted my local carers' support group about bereavement counselling.
Hazara8, your comment that, whatever we do for our loved ones, it's not possible to eradicate dementia, really struck a chord - a much-appreciated reality check.

 

[Soobee]

I certainly understand the feeling that I could and should have done more for my parents. However, as time goes by I have to accept that I did what I could based on what I knew at the time. Yes I could have done a lot more but maybe that would have caused other consequences.

Be gentle and kind to yourself as much as you can through this difficult time of grieving and adjusting to the loss of your mum.

 

[malengwa]

Hi josiejo, how are you doing today?
It' still raw for you, you're most probably exhausted. I lost mum in December and I still feel moments of complete loss.
I still think I could have done more, but I do in my heart of hearts know I did what I could, and the 'more' may well not have made any difference. Mums deterioration was quick, and sometimes I still feel shock.
But, I am wallowing in memories, I'm making a photo album of mums life for my dad and it's really helping me, it' giving happy memories first in my mind rather than sad ones. I' even laughing at some of the strange things mum did instead of feeling sad about it. But then sometimes I just break down and cry. This is normal.
Please be kind to yourself, you feel what you feel, tomorrow you may feel something else, and the next day and the next. Eventually you will look back and see that your feelings have changed over time. Happy memories will replace sad ones, other things will fill the void in your life. But it can take time, let it.

Take care xx

 

[worried2]

Hello Josiejo, i recognise that guilty feeling: it’s so easy to look back and think ‘I could have more’. In reality, as a carer, you have done the very best that you can looking after your dear mum for many years. I find myself asking ‘what would Mum have said’ and know deep down that she would have wanted me to have a life as well as looking after her. Dealing with loss, particularly after such a long time as a carer, is a real emotional rollercoaster. We all have to find our own way of dealing with things, but I hope you find some comfort in knowing that you are not alone on this journey. Take care Xx

 

[Josiejo]

Thank you ALL so much for your supportive replies.
It means so much to hear from others who really know the pain this disease creates.
My Mum was a darling, full of fun and laughter and that is the Mum i need to remember.
Thanks again and my love and support to you all xx

 

[Greenie Pie]

Hello,
This is where I turn when I don't understand how I feel. Hope that is ok.
Our darling Mum was laid to rest on Tuesday, she is back with my Dad, they are together again.
For some reason I cannot stop going over the last 6 years and feeling sad and angry and thinking that I should have done more. Everyone has been telling us that my Brother & I did everything we could and more and that our parents would be proud....I'm not sure people really understand this disease, in fact some at the funeral said they know very little.....I said that I hope they never have to know.
Everyone at the funeral will remember our Mum before dementia, which is a really good thing. None of them will have to endure the memories that we have.
I guess this is part of the grieving process, it would be lovely to hear from anyone who is going through this or has been on their own journey.
Thanks for reading, my best wishes to everyone,
Josie xx

Thank you ALL so much for your supportive replies.
It means so much to hear from others who really know the pain this disease creates.
My Mum was a darling, full of fun and laughter and that is the Mum i need to remember.
Thanks again and my love and support to you all xx

Thank you ALL so much for your supportive replies.
It means so much to hear from others who really know the pain this disease creates.
My Mum was a darling, full of fun and laughter and that is the Mum i need to remember.
Thanks again and my love and support to you all xx

Thank you ALL so much for your supportive replies.
It means so much to hear from others who really know the pain this disease creates.
My Mum was a darling, full of fun and laughter and that is the Mum i need to remember.
Thanks again and my love and support to you all xx

Hi my mum also 26-3-18 with vascular dementia among host of other things .
The post Harraza8 wrote is I believe spot on . You can’t change what’s happened the film replays are of course relentless and really so sad that no one can really understand if they haven’t been there.
I do believe if you do a swap mentally and be your mum pre dementia what would she say to you. The day after my mum died I bought a stack of magazines and ran a bath and poured a glass of wine . I didn’t feel like any of these but I needed to recapture her . That is what she would have done for me . The best honouring of her memory is to be as kind to yourself as she would have been to you.
I am up down but I know this is the right way for me at least
Take care

 

[Murper1]

It is coming up to a year since Mum died after 10, possibly 15, years of dementia. And it is less than two since Dad died, and nearly 5 since my brother died. But one strange thing is that I think about them all just as vividly as each other; sometimes I have such a clear sense of them all it is uncanny. Like you Josiejo, I often think why didn't I do this, and why didn't I do that for them, and the sense of sadness that I have is at times still overwhelming and leaves me breathless, though perhaps with increasing intervals of relative norm between. One of the things is that, although Mum couldn't talk, dress, swallow or walk, she could still hold a pen and write pages and pages of a phrase and that was; 'thinking and thinking and thinking', so I while everyone else thought she was 'not there', I knew she was, and she would lean her forehead on mine, and pat my back gently when I held her, and look at me directly and blink slowly. So reading your post and the replies shows me that I am not the only one with this 'burden' of wishing I had done more. I'm not religious, but I think I'm lucky in one way, and that is that I can sometimes feel an arm around my shoulder and my mum, dad or brother saying 'you're brilliant!', well I'm not, but at least I 'know' that they are somewhere about and sending me and my two boys their love.

 

[Karen22]

I lost my mum who had Alzheimer's in August 2014 and my dad now has Vascular Dementia amongst other health problems. It has been and is such a difficult time watching my parents diminish and alter so drastically, as well as the loss. I don't live near to them and have health issues myself so this has been exhausting and terribly upsetting. As others have said, try to be kind to yourself and don't think just of regrets. I think we all wonder if we could have done more - it's part of the grieving process. We do what we can and, as already said, our parents would want us to carry on with our lives and not berate ourselves.
Karen

 

[Karen22]

I find that, despite the dementia diagnosis, there are still parts of my parents that were there for me if Iooked closely enough. My mum didn't know me as her daughter but thought of me as "her best friend". She used to tell me before she became ill that she would be on my shoulder so I like to think of her th
Karen

 

[Karen22]

There. I have no siblings, only my husband so it is lonely at times.
Karen

 

[Mepperslady]

As you can see you are not alone with the feeling of "whether you could have done more". The answer is emphatically no. Whilst in the role of carer for your loved one, it is hard so you survive, you make decisions based on the current situation, there is no room for contemplation or reasoned thought. When you emerge not only is there time to breathe and reflect but time to question- try not to, you were there struggling against this awful condition and you could do no more.

Someone once said to me that after your loved one is at peace there is a sense of "survivor's guilt"which when coupled the feeling of loss for loved one can be quite soul destroying.

My Mum died 2 years ago and it took me nearly 12 months to "recapture" the person I used to be prior to dealing with dementia. I walked around with this terrible sense of displacement from life and overwhelming feeling of loss. It is natural and your brain just needs time to catch up. Take it easy on yourself and take time to reflect on what you achieved rather than what you didnt. For one, your loved one was at home safe and comfortable with you not in a home . CONGRATULATIONS

 

[Kaitlin]

Hello,
This is where I turn when I don't understand how I feel. Hope that is ok.
Our darling Mum was laid to rest on Tuesday, she is back with my Dad, they are together again.
For some reason I cannot stop going over the last 6 years and feeling sad and angry and thinking that I should have done more. Everyone has been telling us that my Brother & I did everything we could and more and that our parents would be proud....I'm not sure people really understand this disease, in fact some at the funeral said they know very little.....I said that I hope they never have to know.
Everyone at the funeral will remember our Mum before dementia, which is a really good thing. None of them will have to endure the memories that we have.
I guess this is part of the grieving process, it would be lovely to hear from anyone who is going through this or has been on their own journey.
Thanks for reading, my best wishes to everyone,
Josie xx

I am looking after my step step dad. My mum was married 3 times. I love dad but feel guilty myself , my husband is brilliant and I wouldn't be getting through this sad time without him beside me. Dad has dementia, he is living in lovely accommodation that costs the earth monthly. He's in hospital at the moment with another water infection, we're waiting for his discharge now but there has to be extra support for washing and dressing, he's getting worse and wishes he was dead. How do i feel I feel guilty for the way he is and he knows what's happening to him. He Will still be wondering how he is going to get to see mum , she's got Alzheimer's with ley bodies. Mum is in a home and doesn't even know me now. I feel guilty for not getting to see mum everyday. My kids say that we do loads for mum and dad, you put your life on hold. I'm sorry that you feel lost, I'm dreading the day when there gone. Good luck with everything and don't feel guilty and lost. You did the best you could under the circumstances. Sending my love, Sheena.

 

[Bobby Smith]

Hi Josiejo, my mum sadly died a year ladt January after 10 years with dementia. I understand very well what you are going through. Something I realised after the initial grief was that when a loved one dies you also have to grieve for the person you loved before the dementia because when the dementia arrived there was no time or space to miss the person you'd previously known. Also the way other people view the loss saying they're no longer suffering doesn't really help because you are still really missing them because I do believe no matter how devastating the dementia is your loved one is still there.
It is hard to move forwards but you will become able to use the strength of your love for them to move forward eventually and ypu will be wiser, kinder and mor generous because of your experiences.
Be kind to yourself and others.

 

[rockysmts]

My mom has been gone 2 years this April 5th. I took care of her for 5 years. My father walked away after she fell and broke her leg and was admitted into a nursing home for rehab. That is when the Alzheimer's took a leap forward and things got worse very quickly. I learned a lot about nursing homes and how they are about the money and full of lies and promises. I had to quit my job in the end to be there every day to make sure she would eat and take her meds. I am telling you just because a nursing home looks beautiful on the outside, does not mean the care is better. These places are so understaffed. I never dreamed I would have to place her in a nursing home, but she was diagnosed so was I with Rheumatoid Arthritis and few more to go with it. In the end I gave her permission to let go and that to not worry about me. I will never forget the day I lost her. I cried but then it is like I shut off inside. I have breakdowns at the weirdest times, but for the most I feel so lost also. I can't believe she is gone, but relieved she isn't lost and alone in her mind.

 

[Pauline123]

Hi Jodie
Reading your post is like reading about my own story. We lost our Mum on Boxing Day, and I just feel numb. I was the main career but with some help from my brother we looked after Mum for six years. Then after her going out one night and us having to get the police to help find her social services said she had to go into a home. This broke me, I felt that I had let her down. I just keep replaying the day we took her into a home over and over again. We lied to her saying she was going on holiday, I just keep hearing her say she didn't want to go 'could she stay with me' and I can still see her sad face.
Mum thought that I was her sister, and she loved my aunty so I get some comfort from that. I always say that I had two mum's. My Mum and my dementia Mum and I know my Mum would have hated it if she knew that she had become incontinent. She would have been so embarrassed, bless her. I used to pray every night asking for her to pass away in her sleep so she was out of that terrible life she had had forced upon her. Then when she did I regretted all those prayers.
The doctor called us in one day saying that Mum was refusing to take her Meds and how did we feel about stopping them. Mum had vascular dementia, alzheimers and mass by her heart and was on clexain injections. We decided to stop her meds then she passed away 6 weeks later. The guilt from that is enormous.
There are days when I think we did the right thing because Mum is safe, free from this horrible condition, and most of all she will be happy with my dad whom she has deeply missed for the last 26 years. Then the guilt comes back.
I hope in time that we will be able to come to terms with our mums passing. That we will know that they are in the best place and that we really did our best. Maybe we will be able to move on and remember the good times. Also hopefully we will be able to live our lives as our parents would want us to.
Take care. X

 

[Murper1]

Gosh. So much of what Josiejo and everyone is writing is familiar to me. So good to read thank you. Some amazing people here.

 

[Josiejo]

Thank you all, so, so much.
It's just incredible to feel so much support from you all, even though I am sitting here crying now, because other people understand the true horror and heartbreak of dementia.
I just feel so lost and empty and miss my Mum so much. Having said that her quality of life was just unbearable for the last 12 months....of her 6 year journey
Life goes on they say....and that is what i'm struggling with right now, I've been so strong for so long and now i'm just floundering.
Thank you all, you are in my thoughts xxx