Aged 16 I watched my maternal grandmother die of Alzheimer’s and I heard of my mums uncle dying from the same brutal disease in my early twenties. Age 26 In December 2012 I first noticed the confusion. Over the next 11 years of countless losses and grief , I watched Alzheimer’s attack my mums brain. But all the grieving over those last 11 years has still not prepared me for this final grief. At 37 it feels too young to have lost my mum and the added grief that this journey began when I was 26. I feel blessed I was there with my mum as she breathed her last and to have the gift of seeing her smile one final time and that she was so gently taken home to be with God. There is a relief knowing that there will be no more micro or macro losses but I don’t know how to process this and live without the fear of loosing my own memory - I think it’s partly why I struggle to throw out old letters and cards (even ones which evoke unhappy memories), I feel a need to preserve my own sense of existence and life lived in case I loose my own memory. It was only following my mum dying 6 weeks ago today that I began to realise that grief has affected me a lot more than I have realised over these last 11 years in how I’ve been existing often rather than living - on standby waiting for the next call from my dad telling of the latest hospital admission or experiencing another heart splitting loss in my mums ability to connect with the world and people around her as the disease progressed. I need to learn how to re-live again and let go of the fear of what might happen in the future to my own mind.
The final grief & fear of loosing my own memory
- Thread starter Grieving
- Start date
Welcome @Grieving.
You have spent many years living with dementia and it will take time for you to know it will not necessarily have to affect you.
I`m so glad you have found this forum and are able to share your experiences and fears. Writing things out and receiving support from others may help you to overcome these fears and start living again.
I have had three experiences of dementia in my life with my mother and father and my husband. They were all overwhelming.
Have you considered grief counselling? It might help. I`m sure your doctor would refer you considering what you`ve been through. I know there will be a waiting list if you do decide to take that route so please stay with us and take whatever support is offered,
You have spent many years living with dementia and it will take time for you to know it will not necessarily have to affect you.
I`m so glad you have found this forum and are able to share your experiences and fears. Writing things out and receiving support from others may help you to overcome these fears and start living again.
I have had three experiences of dementia in my life with my mother and father and my husband. They were all overwhelming.
Have you considered grief counselling? It might help. I`m sure your doctor would refer you considering what you`ve been through. I know there will be a waiting list if you do decide to take that route so please stay with us and take whatever support is offered,
Welcome from me too @Grieving to this friendly and supportive forum, There is a wealth of shared experience of dementia to be found here so I am glad you have found us.
You certainly have had a huge amount of exposure to this dreadful disease, and I'm not surprised that you feel that you do. You Mum passing only six weeks ago, your emotions will be very raw. I do so feel for you.
My own Mum passed a year ago, and not a day goes by that I don't think of her.
Like @Grannie G has said, I hope you find some comfort in just putting down on here how you feel. Members here understand .
You certainly have had a huge amount of exposure to this dreadful disease, and I'm not surprised that you feel that you do. You Mum passing only six weeks ago, your emotions will be very raw. I do so feel for you.
My own Mum passed a year ago, and not a day goes by that I don't think of her.
Like @Grannie G has said, I hope you find some comfort in just putting down on here how you feel. Members here understand .
Hi Grieving.
So sorry to hear of your loss. You will miss your mum so very much, but hold tight your memory of holding her hand at the end. I was with my mum when she died. I was so glad I was with her. My dad died when i was 9. Sadly he died in hospital. I am 61 now. Ive had parental bereavement at both ends of my life.
Alzheimers is tough. There is no easy answer. None of us know what life holds in store for us.
But you have your whole life ahead of you and you have so much to offer and so much to do. Its too early to "go and grab the world". We all need to grieve at our own pace.
But if you are worried about getting Alzheimers it may be wirth talking to your GP to access Memory Tests etc so you can know you are OK. Or as time goes on ,Know if you are starting to struggle. Then you are not in your own worrying. You may never get Alzheimers. So its important you tey not to worry unless there is a reason to worry.
Counselling would be good for you. If you found the right one for you. Everyone is different so be kind to yourself if one type of counselling doesnt help. Explore others.
Its fine keeping memories. We all do that. Its normal. People have family heirlooms 100s if years old. Some people want clutter free houses. We are all different. If keeping items gives you comfort. Keep them. My mum kept all her memories if my dad 51 years after his death. She is now reunited with him.
You will surely have waves of grief. Thats normal.
Look after yourself. Be informed but at the same time, give yourself time to relax and enjoy what life gives you today. If life gets tough, just focus on an hour of you time in a day, to recharge. Meditation can help to clear our minds of clutter thoughts. I did this and use it throughout the day. I give me mind a rest on the bus, in the car, in shops, at home. Anywhere i feel I need a rest, I just "switch down a level". Hard to master at first, but good once you know how to do it.
Take care.
So sorry to hear of your loss. You will miss your mum so very much, but hold tight your memory of holding her hand at the end. I was with my mum when she died. I was so glad I was with her. My dad died when i was 9. Sadly he died in hospital. I am 61 now. Ive had parental bereavement at both ends of my life.
Alzheimers is tough. There is no easy answer. None of us know what life holds in store for us.
But you have your whole life ahead of you and you have so much to offer and so much to do. Its too early to "go and grab the world". We all need to grieve at our own pace.
But if you are worried about getting Alzheimers it may be wirth talking to your GP to access Memory Tests etc so you can know you are OK. Or as time goes on ,Know if you are starting to struggle. Then you are not in your own worrying. You may never get Alzheimers. So its important you tey not to worry unless there is a reason to worry.
Counselling would be good for you. If you found the right one for you. Everyone is different so be kind to yourself if one type of counselling doesnt help. Explore others.
Its fine keeping memories. We all do that. Its normal. People have family heirlooms 100s if years old. Some people want clutter free houses. We are all different. If keeping items gives you comfort. Keep them. My mum kept all her memories if my dad 51 years after his death. She is now reunited with him.
You will surely have waves of grief. Thats normal.
Look after yourself. Be informed but at the same time, give yourself time to relax and enjoy what life gives you today. If life gets tough, just focus on an hour of you time in a day, to recharge. Meditation can help to clear our minds of clutter thoughts. I did this and use it throughout the day. I give me mind a rest on the bus, in the car, in shops, at home. Anywhere i feel I need a rest, I just "switch down a level". Hard to master at first, but good once you know how to do it.
Take care.
Thanks for sharing, I’m also going through a similar thought process. My brother and I have been caring full time for my Mum (diagnosed in 2008) and Dad (2018) at home, both with Alzheimer’s. Mum died 6 weeks ago too. My grief has been very different to what I expected.
We were also with Mum right up to the very end, and are proud of how we were able to look after her and see it all the way through. I applauded her when she went. She was incredibly strong and good humoured even when all her capacity had left her. It was very, very difficult for the last five years and I think we had lost perspective, and all sense of boundaries in terms of how much we invested in caring.
I completely understand the want to live life now. I feel old, next in line for the disease. Mums diagnosis was at 63, so by that score I may only have 15 years until I succumb to dementia myself. Given that the last 10 years has been focused on caring it does make me stressed to think that’s all I might have, and absolutely panicking about trying to fill life with as much as I can. I have absolutely no regrets and it was a privilege to be able to spend that time with Mum and stay close.
But of course we still have Dad at home. His dementia has accelerated since Mum has gone and his grief is incredibly difficult to watch and also understand. It’s hard to provide comfort, which is heartbreaking. We may still have years with Dad or he may only be with us a short time. Not knowing is hard too. Everything with Alzheimer’s is so hard to pin down, never any certainties.
I don’t have any answers but I think the advice to start tracking memory testing with the GP is good. I also have therapy through Better Help every week and that also helps to have someone mirror back how much is still achievable in life, and how normal it is to have all these concerns.
Best of luck! We only have one go around. We can worry or we can do things that keep us moving into new energies and states of mind. Keep trying! That’s all we can do.
We were also with Mum right up to the very end, and are proud of how we were able to look after her and see it all the way through. I applauded her when she went. She was incredibly strong and good humoured even when all her capacity had left her. It was very, very difficult for the last five years and I think we had lost perspective, and all sense of boundaries in terms of how much we invested in caring.
I completely understand the want to live life now. I feel old, next in line for the disease. Mums diagnosis was at 63, so by that score I may only have 15 years until I succumb to dementia myself. Given that the last 10 years has been focused on caring it does make me stressed to think that’s all I might have, and absolutely panicking about trying to fill life with as much as I can. I have absolutely no regrets and it was a privilege to be able to spend that time with Mum and stay close.
But of course we still have Dad at home. His dementia has accelerated since Mum has gone and his grief is incredibly difficult to watch and also understand. It’s hard to provide comfort, which is heartbreaking. We may still have years with Dad or he may only be with us a short time. Not knowing is hard too. Everything with Alzheimer’s is so hard to pin down, never any certainties.
I don’t have any answers but I think the advice to start tracking memory testing with the GP is good. I also have therapy through Better Help every week and that also helps to have someone mirror back how much is still achievable in life, and how normal it is to have all these concerns.
Best of luck! We only have one go around. We can worry or we can do things that keep us moving into new energies and states of mind. Keep trying! That’s all we can do.
I just came across this thread after a search when feeling lost. I am also 37 and my mum was diagnosed 18 months ago and has deteriorated quickly and just moved into a care home as I could not manage 24/7 care whilst working or even when signed off, it was too much to handle as it is not as simple as memory loss as she developed a lot of anxiety, depression and psychosis tendencies - fuelled by worry, not seeing things that were not there. She is in a good home, though I need to accept it won’t be the same care I provided but the guilt and the sense of loss/ grief/ bereavement seems unbearable. Having to make calls to multiple suppliers and having to go through all her belongings and everything in her former life is just so hard and sad. I only have my dad in my life and he just isn’t an emotionally supportive person so doesn’t know what to do/ how to help. Some days I want everyone to just leave me alone but I know that isn’t helping. I need to get back to work but I am also not sure that I will cope with all the emotions despite the distractions as this will also limit my ability to visit her.
Sorry for a rant, I am just tired of people keep telling me things like move on or that it should be easier now she is ‘not my problem’ when they haven’t been through it themselves so don’t understand. I have lost my mum, my best friend and my rock and am just struggling to comprehend moving forward.
Sorry for a rant, I am just tired of people keep telling me things like move on or that it should be easier now she is ‘not my problem’ when they haven’t been through it themselves so don’t understand. I have lost my mum, my best friend and my rock and am just struggling to comprehend moving forward.
Hi @NicF
welcome to our forum. there are so many here who completely understand what you’re going through. of course you can’t just ‘move on’, it’s not that simple - and you still have a caring role but different.
If it would help do start your own thread and others will come along and say hi and add their support.
welcome to our forum. there are so many here who completely understand what you’re going through. of course you can’t just ‘move on’, it’s not that simple - and you still have a caring role but different.
If it would help do start your own thread and others will come along and say hi and add their support.
Thanks for all the responses to my post. 8 weeks today. We bury my mum tomorrow - it’s been horrendous waiting this long so hoping tomorrow offers a hinge point in my grief journey. I’ve been told that bereavement counselling is recommended minimum 3 months after a death and ideally from 6 months, so I’ll put myself on a waiting list for that. I’m making plans so that I can retire at 60 so that if I do develop Alzheimer’s I can at least have some time to enjoy retirement before I get to that point. My husband will know to look for signs of the disease in me and as I get older I’ll ask about that with GP and memory tests. But I also hold onto the fact that I’ve got my dads genes too and no dementia in his side of the family. Ultimately I can’t control what will happen and I’m more at peace with that now, but writing it out here did help me just to name that fear and to share with others who really understand how brutal Alzheimer’s is. As I’ve gone through letters my mum wrote to me over the years I’ve discovered some beautiful things she wrote to me and I’m stitching myself in her handwriting a keepsake I can frame to remind myself to keep living life to the full even when it feels hard to find the purpose or motivation to really find joy or start new things. A book I’ve found helpful is: ‘Living: when a loved one has died’ by Earl. A. Grollman, which is written in bite size chunks the kind of amount of text my brain can cope with processing at the moment.
I’m so sorry to hear your struggles and pain. Take care of yourself- that is a lot to deal with on your own, I hope you have supportive friends. Moving on is not only unhelpful it’s not possible- moving forwards, in time, is the only thing we can do. A book I found helpful when processing my mums diagnosis was ‘the grief recovery handbook’ 20th edition by John W.James and Russell Friedman. It has a section on grieving the change in relationship when someone develops dementia/Alzheimer’s. I found this really helpful for me to be able to say goodbye to the person I had known mum as before Alzheimer’s so that I could have a new relationship with her as the person she was with Alzheimer’s. I appreciate everyone’s symptoms can look different with this disease and the worry and seeing things that aren’t there is really distressing. I pray you still have moments when you can see and connect with your mum for the person she still is who you know and love and who loves you. I often thought of it being like a mice nibbling on wiring which meant that often mum wouldn’t be cognitively present but then at other moments she would know and be present to us even if she couldn’t verbally express that and then those few precious moments would be interrupted by the mice again!
Thankyou for sharing I’m so sorry to hear about your 3 losses of your parents and spouse to dementia.
Thanks for your response. No friends, it is just me really other than family members that guide me to move on because she is now in the best place which again doesn’t help.
Thank you for the book recommendation, I will look into this further.
There are still some brief moments when I get to see her smile, which is rare or that she tells me she misses me and which just starts the tears anyway.
your situation sounds just like mine. My mum’s now in a care home as the anxiety and depression and behaviours were too much for my dad to cope with. My dad is also very unemotional and doesn’t seem to understand how I feel or give me a hug when I’m upset. It’s my birthday today and it’s the first my mum won’t realise it is. She was the one person I could rely on and talk to. I also sometimes just want to be on my own and have definitely distance led myself from friends which I know is bad but they just don’t understand and most days I just can’t be bothered
Sorry to hear you are going through this too. My mum went into her home the day before my birthday and couldn’t then attend the plans we had but I don’t think it really sunk in at the time. She doesn’t always recognise me when I visit now and sometimes chooses not to speak but I get comfort from other actions like yesterday when she spontaneously hugged me or when she grips my hand tighter when I talk to her like she knows I am there. I haven’t found anyone who really understands the situation or the anticipatory grief that has hit me hard, especially now the distractions of Christmas are over and it is back to the ‘real world’ of dealing with things.
That’s really kind thank you. It’s not getting easier as yet, so far it has become more difficult as she continues to deteriorate and the anticipatory grief has set in. It’s much harder to build yourself up whilst the person deteriorates and no one really seems to know/ talk about it
