Do Dementia caring memories fade?

Whisperer

Registered User
Mar 27, 2017
386
0
Southern England
Hello

My mother died earlier this year. It was heart failure, her final decline at home was sudden and shocking during the height of the last lockdown. Two days palliative care in hospital then death. I have several disturbing images in my mind of mum’s last hours at home then in hospital. I accept they will no doubt be with me for the rest of my life. What I find more concerning is my inability to hold mum in my memory from her pre Dementia days. I have slowly built up a collection of such memories, recorded them in a memory book. I have created a memory box of my mum, including a few favourite clothes she wore, her long standing wrist watch, a poem she once wrote down, etc. Both of these activities were advised by a telephone counsellor I am speaking to once a week. I am not sure how well that will go, as the lady has no direct experience of bereavement in terms of Dementia care.

Why is it then I can remember with an effort old and happy memories, but they then get drowned out by miserable Dementia caring memories. I do not cherish or seek out the latter, they just seem to have a life of their own. I cared for mum from 2015 onwards, have no regrets about doing so, but I would hate to think that full time role is in future always going to be the default way I remember mum. Dementia is a cruel illness but that would just be another cruelty to undertake even in her death.

Is the above just part of the grieving process after caring for a loved one with Dementia? Do such memories fade and get replaced with older better ones? I would welcome the views of others.

Finally I am not sure if I should raise this last point but it is playing on my mind. My mum always use to say she hoped there was something else after death, or perhaps we just close our eyes, go to sleep and know nothing more. Mum’s death has forced me to confront human mortality in a real sense for the first time in my life. I speak to mum each day. There is no reply of course, but I find it reassures me, gives me comfort. Or is that just denial of her death? God knows. I am open minded as regards if there is life after death in some form, but if so hope that mum has reached it after her later years of suffering. Or am I just an old fool? I am still totally isolated, in a house which is now so quiet, the busy full time caring role now gone.

It will soon be three months since mum died, but most days I am still numb, sad, lacking in motivation, sometimes just reduced to tears. I am eating well, sleep mostly okay, but when I wake I soon feel grief and related feelings. Every where I look in this house I am reminded of mum’s illness. Clearly there are others who have lost loved ones and I would welcome any advice. I read articles on the stages of grief and find it hard to follow. My emotions are all over the place, day to day, so stages of grief seems hard to understand. I read threads here, the problems of caring and think pull yourself together. It is just hard knowing how to start when literally I am stuck in a house every day on my own, a part from a daily walk.
 

Izzy

Volunteer Moderator
Aug 31, 2003
74,418
0
72
Dundee
I’m sorry you are finding things so hard @Whisperer.

I think what you describe is a very natural part of grief. It’s such a short time since you lost your mum I don’t think you have had enough time for your emotions to sort themselves out. My husband died coming up for 5 years ago. I think of him every day. His last week was very traumatic and for a long time I couldn’t get that time out of my head. I still think of it but I do believe the happier memories are more prominent now. I have photographs of him everywhere and I talk to him each and every day.

I found a video clip about grief which I thought explained it very well for me. I will look for it now and add the link as soon as I find it. I hope it is of some help to you too.

Edit - this is it -

 

Jessbow

Registered User
Mar 1, 2013
5,730
0
Midlands
My mum has been gone almost 4 years. The image i had in my mind was the very last day of her life, as she lay peaceful and comfortable in her bed, just breathing. Every time I thought of her, that was the image that came to my mind.

Over time it changed, and I have various pictures of her in my minds eye now- it does change and it does get better, abeit only slowly. I guess, over time, you work you way back to 'who she was' before ' who she became' -which were two different people entirely.

Its very early days, give yourself time xx
 

jaymor

Registered User
Jul 14, 2006
15,604
0
South Staffordshire
Three months is no time @Whisperer, you will still be grieving.

My husband died just over five years ago after living 11 years with dementia. We had been marred 39 years when he was diagnosed and he died 2 months before our 50 wedding anniversary. I have 39 years of happy memories which now are my main memories. Yes there are days when the dementia memories come to the fore but they are far out weighed by the good memories.

The feeling of loss never goes away but the pain and numbness gets less. Just take your time.
 

Duggies-girl

Registered User
Sep 6, 2017
3,634
0
Hi @Whisperer I remember your posts when your mum died and I can sympathise with how you are feeling now. My dad died February 2020 so over a year ago now. It has not been long since your mum died and you can't expect to feel anything like normal yet and I certainly don't.

My dad died with me holding his hands, talking to him and telling him that he would soon be back with mum. I have never believed and dad certainly didn't but I get a bit of comfort from it now and I talk to them both. I don't know what else to do. I also have disturbing images of dads last few days and I don't think that I can forget them but I am trying to make some new plans that include dad (I know that sounds mad but I did this when my mum died) My mum died nearly ten years ago in similar circumstances (she didn't have dementia) with me holding her hand and talking to her and when she was gone I sort of devoted myself to dad. I would watch football on tv with dad because I knew that would make mum happy. I would do anything for dad for mums sake.

My new plans include going to some of the places dad went to so I can see what he saw but of course I can't go anywhere at the moment but I can plan.

Numb, lacking in motivation, reduced to tears, huge feelings of sadness, yes I am all of those at different times. I really need to clean my house but what the heck, nobody is going to see it but on a different note I have started a bit of gardening, just a bit, not a lot but I have ordered some plants online and I have done some weeding which is more than I did last year. We all start somewhere, it's just not always easy to find the starting point and sometimes the starting point shifts.

I can't give advice other than be gentle with yourself, it's early days and we are all different and these are very difficult times for everyone.
 

Whisperer

Registered User
Mar 27, 2017
386
0
Southern England
I’m sorry you are finding things so hard @Whisperer.

I think what you describe is a very natural part of grief. It’s such a short time since you lost your mum I don’t think you have had enough time for your emotions to sort themselves out. My husband died coming up for 5 years ago. I think of him every day. His last week was very traumatic and for a long time I couldn’t get that time out of my head. I still think of it but I do believe the happier memories are more prominent now. I have photographs of him everywhere and I talk to him each and every day.

I found a video clip about grief which I thought explained it very well for me. I will look for it now and add the link as soon as I find it. I hope it is of some help to you too.

Edit - this is it -

Dear @Izzy
Thank you for the link. That is how I feel, going backwards and forwards in my emotions, sometimes very rapidly. My brain operates at two different levels. The logical side which got me through the caring role. Okay something new comes up, let’s see how best to cope. There is an emotional side but I think over the years I successfully shut that down. I acknowledged each new loss regarding mum, but did not process them at the time. Net result I now think back and now get the upset, as well as that caused by her passing. The first time mum did not know who I was now really hits home, but at the time I just answered who I was and went onto distract mum.
 

Whisperer

Registered User
Mar 27, 2017
386
0
Southern England
Hi @Whisperer I remember your posts when your mum died and I can sympathise with how you are feeling now. My dad died February 2020 so over a year ago now. It has not been long since your mum died and you can't expect to feel anything like normal yet and I certainly don't.

My dad died with me holding his hands, talking to him and telling him that he would soon be back with mum. I have never believed and dad certainly didn't but I get a bit of comfort from it now and I talk to them both. I don't know what else to do. I also have disturbing images of dads last few days and I don't think that I can forget them but I am trying to make some new plans that include dad (I know that sounds mad but I did this when my mum died) My mum died nearly ten years ago in similar circumstances (she didn't have dementia) with me holding her hand and talking to her and when she was gone I sort of devoted myself to dad. I would watch football on tv with dad because I knew that would make mum happy. I would do anything for dad for mums sake.

My new plans include going to some of the places dad went to so I can see what he saw but of course I can't go anywhere at the moment but I can plan.

Numb, lacking in motivation, reduced to tears, huge feelings of sadness, yes I am all of those at different times. I really need to clean my house but what the heck, nobody is going to see it but on a different note I have started a bit of gardening, just a bit, not a lot but I have ordered some plants online and I have done some weeding which is more than I did last year. We all start somewhere, it's just not always easy to find the starting point and sometimes the starting point shifts.

I can't give advice other than be gentle with yourself, it's early days and we are all different and these are very difficult times for everyone.
Dear @Duggies-girl

Thank you for your thoughtful reply, allowing me to share some of your private memories. I made a start on the garden today before the rain started. As you say a starting point.

You are right. Deep down as I posted I guess I knew the answer, that my grief had a long way to run. Many elderly relatives died when I was young, not old enough to fully appreciate what had happened. My mum’s death is the first time I have lost someone who I really loved, having lived together for 32 happy years.

I understand what you mean about visiting places. In happier times me and mum often did day trips to Wimborne in Dorset. There is a park bench near the Minster. We use to sit there and as mum said “watched the world go by”. I hope you see what your dad saw in certain places, when you get the chance to visit them.

I think I will always talk to mum. It gives me peace of mind and if there is something beyond death well I think my mum deserved a ticket. Engaging with her will help me to remember her.

Thank you again for replying. I have decided to stay off this forum for a period of time. Reading the threads I find upsetting at times. Dementia is very cruel. I made mum a promise at the hospital and again at her funeral, to do some good in this world. As the Dash poem states use my remaining days wisely. To do that initially for a time I need to focus on myself. Settle the estate, sell up and move somewhere new, on my own but determined to help where I can. I learnt so much about Dementia, that part of my future efforts will be in that area.

please take care and I wish you a good and happy future. You helped your mum and dad, please now enjoy some time without caring responsibilities.
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,296
0
High Peak
I struggle with the memories. It was mum's worse nightmare to get dementia and it is also mine. I cannot forget the horror of her last 3 years in a care home, where she was anxious, angry and totally confused. Actually, I haven't ever let myself really think about it because it was too awful. At the time, I kept a stiff upper lip (mostly!) and just got through it somehow. But the experience has affected me deeply. I don't think I will ever get over it and it certainly affects how I live my life now. (Not always in a bad way!)
 

Whisperer

Registered User
Mar 27, 2017
386
0
Southern England
Three months is no time @Whisperer, you will still be grieving.

My husband died just over five years ago after living 11 years with dementia. We had been marred 39 years when he was diagnosed and he died 2 months before our 50 wedding anniversary. I have 39 years of happy memories which now are my main memories. Yes there are days when the dementia memories come to the fore but they are far out weighed by the good memories.

The feeling of loss never goes away but the pain and numbness gets less. Just take your time.
Dear @jaymor

Married almost fifty years. A life time of love and companionship. I am glad to hear past happier memories are now in your thoughts most of the time.

I will take my time to start getting over mum. Every thing you read about grief implies some five stage journey you move through. But it is not like that at all. Feelings are all mixed up as are their intensity. I am starting to appreciate that my sense of loss will never fully pass. Having never lost a loved one before as an adult these feelings and the grieving process is new to me. In a way I have been fortunate to reach 61yo and not faced the grief of losing a loved one. The generation above my mum all died whilst I was quite young.

Thank you for replying and I wish you well into the future.
 

Whisperer

Registered User
Mar 27, 2017
386
0
Southern England
My mum has been gone almost 4 years. The image i had in my mind was the very last day of her life, as she lay peaceful and comfortable in her bed, just breathing. Every time I thought of her, that was the image that came to my mind.

Over time it changed, and I have various pictures of her in my minds eye now- it does change and it does get better, abeit only slowly. I guess, over time, you work you way back to 'who she was' before ' who she became' -which were two different people entirely.

Its very early days, give yourself time xx
Dear @Jessbow

Thank you for your thoughtful reply. I appreciate your comment “who she was before who she became”. In those few words you sun up one of the major features of Dementia as an illness. When our loved one departs, the carer is left with the fresh most recent memories. I am reassured by your words that this will change over time. Funny how the mind works. Earlier today a memory came to me from over twenty years ago. Me and mum were out on a windy day and tried to catch falling tree leaves. After nearly thirty unsuccessful minutes trying we gave it up as a bad job. We hugged each other and laughed. Oh mum.........
 

Whisperer

Registered User
Mar 27, 2017
386
0
Southern England
I struggle with the memories. It was mum's worse nightmare to get dementia and it is also mine. I cannot forget the horror of her last 3 years in a care home, where she was anxious, angry and totally confused. Actually, I haven't ever let myself really think about it because it was too awful. At the time, I kept a stiff upper lip (mostly!) and just got through it somehow. But the experience has affected me deeply. I don't think I will ever get over it and it certainly affects how I live my life now. (Not always in a bad way!)
Dear @Jaded'n'faded

I am so sorry. Mum died still living at home, but my greatest caring fear was Dementia getting so bad mum had to go into a care home. I am truly sorry for what happened to your mum. I can empathise with how it has affected you and your memories, appreciating you went through my worse fear. That must have been a very hard three years to deal with.

I think I understand your last comment. Since mum died for example I have gone onto a very healthy eating regime, doubly fearful of heart problems which gave my mum Vascular Dementia. In turn I do not think I can now get really attached to anything not important in life eg supporting a football team, politics, etc. Life has just boiled down to thinking about the basics, what really is important.

Thank you for replying to my thread. I can only hope you enjoy good fortune in future. Best wishes
 

Pepp3r

Registered User
May 22, 2020
96
0
Dear @Whisperer
I am thinking of you and wishing you strength on your journey, i have just passed the first year milestone of being without mum .... and im getting there. i can talk about and remember funny stories of mum without getting sad . Like others on this thread i too talk to her and it brings some comfort and a sense of belonging still.
In the beginning when the very sad images filled my mind, i let them sit there with my thoughts and had a good cry. Somehow my mind is learning to accept them alongside the good memories ( not easy to explain! ) .
take care of yourself @Whisperer and keep doing what ever feels right for you.
 

Whisperer

Registered User
Mar 27, 2017
386
0
Southern England
Dear @Whisperer
I am thinking of you and wishing you strength on your journey, i have just passed the first year milestone of being without mum .... and im getting there. i can talk about and remember funny stories of mum without getting sad . Like others on this thread i too talk to her and it brings some comfort and a sense of belonging still.
In the beginning when the very sad images filled my mind, i let them sit there with my thoughts and had a good cry. Somehow my mind is learning to accept them alongside the good memories ( not easy to explain! ) .
take care of yourself @Whisperer and keep doing what ever feels right for you.
Hello @Pepp3r

Thank you for your kind words. This will be my last post on this forum for sometime. I will say a few things, mostly to get them down for me.
1) I am usually a pretty mild mannered bloke. However since mum died I have struggled with two powerful emotions. Sadness at the death of my mother, not pleasant but something I can understand. The other emotion is anger. Against Dementia for coming into my sweet mum’s life for her last six years and thrashing it. Against COVID-19 for keeping us house prisoners, stopping me getting my mum mental stimulation in the outside world and physical exercise. Anger is not an emotion I am use to, but you know what I am damn right to be angry.
2) I am making progress of sorts. Today I keep remembering that windy autumn day when me and mum tried to catch leaves blown off the trees. What could be simpler we thought. Thirty minutes later we hugged each other, laughed, realised it was a case of easier said than done. That was my mum, joyful, loving, seeing fun in the simple pleasures of life. We did not know then how things would turn out.
3) The hardest thing I have to deal with in terms of grief is looking towards a future on my own, without feeling deep down I am letting go of mum, that I risk forgetting her, that looking to the future involves betrayal of her memory. Yes I know all totally illogical but those are my confused feelings. Me and mum strangely became very close in our little bubble. Strangely because mum’s memory failed, she needed regular reassurance, increasing physical frailty, etc. All that said at another level we just came closer as her physical needs grew. I cannot really put it into words except for something I heard once. They were the worst of times they were the best of times. Does that make any sense.
4) I need a rest from Dementia at present. The illness is cruel, no effective treatment, will take and take, suck a person and their Carers dry. I currently read threads and get upset. My mum was spared some of the worst effects of Dementia, but only because she died. I will come back one day. People helped me on this forum and in a carers group. To not help others would be wrong at every level. But to do that I need to get my life in order, move, resettle on my own and then re engage.
5) Caring for mum was demanding emotionally and physically. Yet it gave me a lot as well. What really is important in life, as opposed to things which appear to be important but are not. That love, closeness, being able to support a loved one are all very important. How important memory is to defining a human being. That dark moments can teach us more about life than happier ones, what has value and what is passing flotsam.

Any one reading this is on this forum most likely because a loved one has Dementia. I can only offer you my best wishes for the future. I hope you get any lucky breaks going in the lottery of adult social care and health services. Please be gentle with yourself. You may make mistakes but they will be honest ones. Just being on this forum, caring for your loved one, shows your heart is in the right place.
 

Caroline T

Registered User
Mar 22, 2021
27
0
Take Care @Whisperer, your Mum was very lucky to have a son like you. She would now want you to remember the good times. I cared for my Mum, who has Alzheimers for the last two years, before she moved into a nursing home 9 weeks ago. I cared for my Mum with demanding personal care needs, until she lost mobility and I could no longer cope a lone.

Your words above describe just how I feel, I am very close to my Mum, we have shared good and bad times, supporting each other through many difficult times in my life. I miss her so much now she is in the home, but I remember the special times we shared, the shopping trips, visits to parks and the town in her wheelchair. We made so many memories as I cared for her in the last years. I try to remember these and the laughter we shared as she listened and danced, all be it in her wheelchair to the music she loves.

It is very difficult but rewarding to care for a parent and you should feel very proud to have share that time with your Mum.

Take care, Caroline
 

David R.

New member
May 27, 2018
9
0
Swanage
Photographs from happier pre-dementia days .. I filled the house with them early on as a distraction for my wife .. am slowly taking them down now (putting love away ... ) I don't think the cruelty of those images of decline ever go but photographs from better times do make a difference ... it has been 8 months for me .. I always see her photograph and always talk to her and every little thing can hurt me but seeing her as she was helps counter it, just a little bit.
 

MaNaAk

Registered User
Jun 19, 2016
11,885
0
Essex
Dear @Whisperer ,

Your thread is an inspiration if you have read my thread you will know yesterday was dad's second anniversary. Whilst it has been a sad and very stressful time with the house sale. I am moving on and I have found that whilst the memories of dad's worst are still and his rather swift death. I have retained special memories because caring brought me closer to him.
It would be nice if I could dream about him pre-caring but these will come.

Wishing you well.

MaNaAk
 

Whisperer

Registered User
Mar 27, 2017
386
0
Southern England
Dear @Whisperer ,

Your thread is an inspiration if you have read my thread you will know yesterday was dad's second anniversary. Whilst it has been a sad and very stressful time with the house sale. I am moving on and I have found that whilst the memories of dad's worst are still and his rather swift death. I have retained special memories because caring brought me closer to him.
It would be nice if I could dream about him pre-caring but these will come.

Wishing you well.

MaNaAk
Dear @MaNaAk

Thank you for your comment. I started a long term memory book for mum after her diagnosis to help me monitor the progress of her Dementia.

Since mum died I have been trying to build another memory book based on me and mum prior to her Dementia condition.

I have had considerable success at one level , but also mixed success at another. I have built up a considerable number of happier past memories of mum. However whenever I think of mum I always find myself back with memories of Dementia affected mum. This is better than where I was a few months ago. The new memory book gives me a source I can use to reach back when I use it.

I fully understand your comment about getting closer to your dad having cared for him. Me and mum were virtually totally isolated for a year before she died, due to Covid19 and shielding. We grew closer in our little bubble, which made her sudden death after sitting with her through two days of hospital palliative care, all the harder to take in mentally.

I hope your house move brings you happiness. I wish you a long and happy future. Your caring for your dad, like my caring for mum, will no doubt be a permanent part of both of us in the future. I have no regrets taking on a caring role and I am sure you feel the same. Best wishes as you move into the future.
 

MaNaAk

Registered User
Jun 19, 2016
11,885
0
Essex
Dear @MaNaAk

Thank you for your comment. I started a long term memory book for mum after her diagnosis to help me monitor the progress of her Dementia.

Since mum died I have been trying to build another memory book based on me and mum prior to her Dementia condition.

I have had considerable success at one level , but also mixed success at another. I have built up a considerable number of happier past memories of mum. However whenever I think of mum I always find myself back with memories of Dementia affected mum. This is better than where I was a few months ago. The new memory book gives me a source I can use to reach back when I use it.

I fully understand your comment about getting closer to your dad having cared for him. Me and mum were virtually totally isolated for a year before she died, due to Covid19 and shielding. We grew closer in our little bubble, which made her sudden death after sitting with her through two days of hospital palliative care, all the harder to take in mentally.

I hope your house move brings you happiness. I wish you a long and happy future. Your caring for your dad, like my caring for mum, will no doubt be a permanent part of both of us in the future. I have no regrets taking on a caring role and I am sure you feel the same. Best wishes as you move into the future.
And best wishes to you too @Whisperer I bought some roses for dad and will do so again on Father's Day. I also played some of his favourite music today. Yes I kept a diary of our days out, our activities and his dementia and general health decline. He also had diabetes which became a nightmare as decided to buy chocolate when he was still able to go out on his own. You and I will have special memories of our loved ones that no one else will have.

MaNaAk
 

Members online

Forum statistics

Threads
139,035
Messages
2,002,431
Members
90,813
Latest member
tarydew