A story which might help

[Whisperer]

Hello

Some members of this site might remember me having swapped advice and support in recent years. After six years of caring for mum she died in February 2021. I lost the person I most loved, the full time caring role and COVID restrictions meant I remained all alone. I got to a very dark place and stopped coming to this site. Relieved my caring role was over, mum could no longer be hurt by Dementia, I had managed to keep her out of a care home, etc. But on the other hand racked with guilt, terrible memories of mum’s final two days on Earth given inadequate palliative care in a hospital torn a part by record COVID cases. No one to blame but I think that experience and others on the caring journey left me with some type of PTSD.

Any way in recent months I have become a lurker reading this particular part of the forum. It seems to me ex carers get forgotten and are largely left on their own. In two weeks time I will visit the local crematorium gardens and see the entry in the book of remembrance. A year on in my worse moments I still feel like I did the night I came home from the hospital after mum died. I want to try and tell a fictional narrative of a speeded up caring journey. It is not altogether my own story as I have tried to incorporate points mentioned by others. I just think it might help to give a mental image to others, to hold onto, when words fail to describe what they feel. Here goes.

You put your loved one in the car after receiving a Dementia diagnosis at the Memory Clinic. You have a few leaflets on the back seat, but already you sense a closing in feeling of being isolated and on your own. You join in the traffic and the world looks the same, but it feels different. Other cars have happy smiling families, young couples, etc, normal humanity. Driving along a traffic Police man stops you and directs you down a side road called Long Journey Avenue. His badge cap identified him as PC Fate. You notice once you have turned down it he allows the rest of the traffic to proceed on the other road.

The road you are now on goes down hill at an increasing rate. There are side roads off it. Despair Close, Lost Friends Avenue, Sacrifice Road, Family Appreciates From A Far Drive, etc. Soon you are in the countryside, no street lights, fog starts to develop and thickens, still the road goes downhill. The fog forces you to slow down, focus on just the task in hand, you have lost all sense of contact with the outside world. Crawling along you realise the road has flattened out and a brick wall appears across the road. You get out and to left and right and above you can see no edge to the wall. You turn and find your loved one standing by you. During the journey they became increasingly silent, now even the eyes are blank. Before you can do anything else they walk through the wall. You try to follow but to you it is solid. Not your time yet.

Instinctively you feel desolate, sad, lonely, isolated and grief stricken. Your caring journey is over but you are physically and mentally isolated. From here on the road to recovery varies. You have to get back up the hill and rejoin society. For some the journey is relatively easy. Get into the car turn around and drive back the way you came. For others they find the only gear working in the car is reverse. A slow drive backwards in thick fog makes the journey all the harder. For others the car just will not work. A long foot slog up hill all the way with the fog whirling around. Some moments you can see clearly then the fog closes in again. A slow journey indeed. Lastly a few cannot immediately start any journey. They feel compelled to stay by the wall, trying to get through, calling out the name of a loved one. After much time they to start whatever journey they can back up the hill.

Reading this only you can decide how much it relates to you. For me six years of caring crammed into a few paragraphs. I am definitely one who stayed at the wall stunned by what had happened. My car refused to start and I am on foot. The fog partially clears some days but thickens on others. Two things keep me going. Firstly the journey was hard, very hard in places. But it was worth while. I learnt a lot about myself, life, society, what matters and what is valueless. Secondly I know my mum would want me to climb that hill. A few days before she died I had helped her to bed, applied various creams and medications and sat in a chair by her bedside exhausted. Mum touched my hand and said “I want you to know I love you and really appreciate everything you do for me”. The fog of Dementia briefly parted and mum gave me a really powerful message. It made six years of caring totally worthwhile. Oh mum I still love you so much it hurts.

I hope the above helps. Ex carers are all in that fog to varying degrees. Even when you get to the top of the hill we will never fully fit back into ”civilised society”;because we have seen and done things it never will. We will never fully “get over it” or “move on” despite what others say. We all recover at varying speeds. But we all stay partly in the fog for ever and some days it thickens. Best way I can describe the journey of ex carers. We are a club whose members would rather not wish to be in, but fate dealt us that card. On a bad day remember it is okay to feel bad in the fog. It is disorientating, deeply unpleasant, gut wrenching at times. But that is the price we pay because we did care.

 

[Alice nun]

This is so powerful I really hope you get to the top of the hill and find some happiness you so deserve. Alice x

 

[Duggies-girl]

Yes, I recognise this journey, the isolation, the responsibility and the grief. It has to get better, it can't get worse so the only way ahead is for it to improve and it will, but slowly and eventually the journey will come to an end and a new road will appear, one that looks brighter and is easier to walk.

It just takes time and some need more time than others but it is there and we will find it somehow. We don't 'get over it' or 'move on' we just find a new way around and get to live another way.

 

[karenbow]

Hello

Some members of this site might remember me having swapped advice and support in recent years. After six years of caring for mum she died in February 2021. I lost the person I most loved, the full time caring role and COVID restrictions meant I remained all alone. I got to a very dark place and stopped coming to this site. Relieved my caring role was over, mum could no longer be hurt by Dementia, I had managed to keep her out of a care home, etc. But on the other hand racked with guilt, terrible memories of mum’s final two days on Earth given inadequate palliative care in a hospital torn a part by record COVID cases. No one to blame but I think that experience and others on the caring journey left me with some type of PTSD.

Any way in recent months I have become a lurker reading this particular part of the forum. It seems to me ex carers get forgotten and are largely left on their own. In two weeks time I will visit the local crematorium gardens and see the entry in the book of remembrance. A year on in my worse moments I still feel like I did the night I came home from the hospital after mum died. I want to try and tell a fictional narrative of a speeded up caring journey. It is not altogether my own story as I have tried to incorporate points mentioned by others. I just think it might help to give a mental image to others, to hold onto, when words fail to describe what they feel. Here goes.

You put your loved one in the car after receiving a Dementia diagnosis at the Memory Clinic. You have a few leaflets on the back seat, but already you sense a closing in feeling of being isolated and on your own. You join in the traffic and the world looks the same, but it feels different. Other cars have happy smiling families, young couples, etc, normal humanity. Driving along a traffic Police man stops you and directs you down a side road called Long Journey Avenue. His badge cap identified him as PC Fate. You notice once you have turned down it he allows the rest of the traffic to proceed on the other road.

The road you are now on goes down hill at an increasing rate. There are side roads off it. Despair Close, Lost Friends Avenue, Sacrifice Road, Family Appreciates From A Far Drive, etc. Soon you are in the countryside, no street lights, fog starts to develop and thickens, still the road goes downhill. The fog forces you to slow down, focus on just the task in hand, you have lost all sense of contact with the outside world. Crawling along you realise the road has flattened out and a brick wall appears across the road. You get out and to left and right and above you can see no edge to the wall. You turn and find your loved one standing by you. During the journey they became increasingly silent, now even the eyes are blank. Before you can do anything else they walk through the wall. You try to follow but to you it is solid. Not your time yet.

Instinctively you feel desolate, sad, lonely, isolated and grief stricken. Your caring journey is over but you are physically and mentally isolated. From here on the road to recovery varies. You have to get back up the hill and rejoin society. For some the journey is relatively easy. Get into the car turn around and drive back the way you came. For others they find the only gear working in the car is reverse. A slow drive backwards in thick fog makes the journey all the harder. For others the car just will not work. A long foot slog up hill all the way with the fog whirling around. Some moments you can see clearly then the fog closes in again. A slow journey indeed. Lastly a few cannot immediately start any journey. They feel compelled to stay by the wall, trying to get through, calling out the name of a loved one. After much time they to start whatever journey they can back up the hill.

Reading this only you can decide how much it relates to you. For me six years of caring crammed into a few paragraphs. I am definitely one who stayed at the wall stunned by what had happened. My car refused to start and I am on foot. The fog partially clears some days but thickens on others. Two things keep me going. Firstly the journey was hard, very hard in places. But it was worth while. I learnt a lot about myself, life, society, what matters and what is valueless. Secondly I know my mum would want me to climb that hill. A few days before she died I had helped her to bed, applied various creams and medications and sat in a chair by her bedside exhausted. Mum touched my hand and said “I want you to know I love you and really appreciate everything you do for me”. The fog of Dementia briefly parted and mum gave me a really powerful message. It made six years of caring totally worthwhile. Oh mum I still love you so much it hurts.

I hope the above helps. Ex carers are all in that fog to varying degrees. Even when you get to the top of the hill we will never fully fit back into ”civilised society”;because we have seen and done things it never will. We will never fully “get over it” or “move on” despite what others say. We all recover at varying speeds. But we all stay partly in the fog for ever and some days it thickens. Best way I can describe the journey of ex carers. We are a club whose members would rather not wish to be in, but fate dealt us that card. On a bad day remember it is okay to feel bad in the fog. It is disorientating, deeply unpleasant, gut wrenching at times. But that is the price we pay because we did care.

whisperer , this really made me cry, my dad died in may and mum 10 weeks ago with alzheimers-i cared for mum and dad for many years , mum was in a nursing home for the last 3 months of her life, the 3 of us meant everything to each other and when someone asks me how i am i say im fine . your words described how i really feel , how difficult and horrendous everything felt and still does although early days for me- i really hope you have more good than bad days and we have to take comfort in that we really loved and were loved in return - mum lost her ability to speak - several weeks later she said 'i love you' just this one sentence then nothing more , as with yourself my mum had that moment and i,ll always cherish itx

 

[Jaded'n'faded]

Hello @Whisperer . All I can say is 'me too'.

I've realised (I'm 2+ years on) that dementia inflicted a deep wound on me and I remain wounded. For me, the experience of mum's dementia was far worse than her death, if that makes sense.

 

[Pepp3r]

hi @Whisperer,
In this journey I went back to the car. Its familiar and safe and i havent really moved.

 

[Whisperer]

Yes, I recognise this journey, the isolation, the responsibility and the grief. It has to get better, it can't get worse so the only way ahead is for it to improve and it will, but slowly and eventually the journey will come to an end and a new road will appear, one that looks brighter and is easier to walk.

It just takes time and some need more time than others but it is there and we will find it somehow. We don't 'get over it' or 'move on' we just find a new way around and get to live another way.

Dear @Duggies-girl
your words are very true, but only ex carers carrying their grief can fully appreciate them. We do indeed get to live another way. The world looks familiar but below the surface for us it has profoundly changed. We have a deeper appreciation of the frail nature of living, can never again take anything for granted, tend to live in this day and not really plan for the future, recognise how many things which seem important are indeed not at all of value.

I do my job and go home. My emotions are flat. My life appears to be a sea of conflicted feelings. No partner or children I would welcome the chance of a loving relationship. That said I could not go through the emotional pain again, the physical demands of caring, at an older age, should a beloved partner get Dementia. So most likely fear of having to do so will keep me single. To live as you say another way.

 

[Whisperer]

hi @Whisperer,
In this journey I went back to the car. Its familiar and safe and i havent really moved.

Dear @Pepp3r figuratively speaking may I suggest your turn the car radio on. I had a great passion for classical music which gradually died in my caring years. Strangely now I find most peace in my spare time listening to it. The music draws me in and takes me back to old pre Dementia memories and places.

When you are ready go into reverse gear, turn the car and then drive forward without looking in the rear view mirror. Keep saying the fog will clear as it must at the top of the hill.

Always be mindful the memory of your loved one will be around you in your thoughts. We do not get over we adapt to a different type of relationship with the deceased loved one. I speak to mum each day. Each night she went to bed mum spoke to her teddy bear called Crawford and asked “are you ready for a cuddle Crawfie because I am”. That bear is now cuddled by me.

I think people who say move on or get over it miss a vital point. A relationship does not end with death. It is to ingrained in thoughts, memories, emotions to do that. Those who use such phrases I suggest have not properly begun to process their grief, or did not really love and know the deceased, or have not yet lost a true loved one. Sadly their time is yet to come on the grief road.

 

[Whisperer]

whisperer , this really made me cry, my dad died in may and mum 10 weeks ago with alzheimers-i cared for mum and dad for many years , mum was in a nursing home for the last 3 months of her life, the 3 of us meant everything to each other and when someone asks me how i am i say im fine . your words described how i really feel , how difficult and horrendous everything felt and still does although early days for me- i really hope you have more good than bad days and we have to take comfort in that we really loved and were loved in return - mum lost her ability to speak - several weeks later she said 'i love you' just this one sentence then nothing more , as with yourself my mum had that moment and i,ll always cherish itx

Dear @karenbow thank you for your reply. Please accept my condolences for your double loss. I fully appreciate how your mum’s words have immense value to you. It reduced me to a croaky voice and feeling very humble when mum spoke to me that night. Mum died a few days later and it later felt on reflection that she knew the end was coming. Perhaps that is just a silly thought on my part. Despite all the set backs, the bad moments, the continuing sense of gradual loss in her last years, her words to me said all that needed to be said. They are embedded in my own memory now.

Please be gentle with yourself. We are all different and travel different roads at different speeds. I am dreading the first anniversary of mum’s death, seeing the remembrance book for the first time, are the words good enough, standing there all alone as I now mostly am in this world. However let me leave you with a thought. I was dreading my first Christmas alone. I worked extra shifts to stay busy but Christmas Day alone was grim. However strangely the festive period gave me a chance to reconnect with pre Dementia mum. We had many good Christmas periods together and those memories came back. In turn they pulled up others. Before then I only had Dementia mum memories. Now I am building a book of older memories when mum was a confident, determined, fun lady. You never quite know how things will pan out.

 

[Whisperer]

Hello @Whisperer . All I can say is 'me too'.

I've realised (I'm 2+ years on) that dementia inflicted a deep wound on me and I remain wounded. For me, the experience of mum's dementia was far worse than her death, if that makes sense.

Dear @Jaded'n'faded
Yes it makes perfect sense. Dementia care involves many things but the accumulation of losses in a loved one is like a series of small deaths. My one great fear is one day in the future Dementia will come for me. A battle I will no doubt have to face alone. I suggest the wounds of caring never fully disappear. A cared cannot take such sustained emotional and mental hits without some permanent impact. I humbly ask you to be kind to yourself, accept the wound is the price of caring for a loved one. Better that than the alternative which would have been to have turned away and then live with that fact into the future.

 

[CAL Y]

Reading through all of your posts( and @ Whisperer your post really resonates.) I have picked up on a couple of points which apply to my life at the moment.
My husband died 11 weeks ago and at the moment I am discovering the Pre Dementia Me. Obviously, I realise that the whole experience could come crashing down on my head at any moment but for now, with the help of fantastic friends I am actually feeling happy for the first time in a long time.

We were a gang of 5, with MH and myself being the only married couple but we are now 4 single people and although they were always very understanding of the situation and he was never left out or made to feel different, I feel that they also feel the same relief as I do at being able to be ourselves again.

The second thing is music. MH and myself were polar opposites when it came to music and over the last few years it became a case of listening to what he liked or nothing at all.
I don’t think that I will ever tune in to Classic FM again.
I bought myself an Alexa. All my favourite music and someone to talk to.?

 

[lollyc]

@Whisperer , I am at the beginning of this - Mum died New Year's Eve - but your words express exactly my feelings. I too have no partner or children, but the idea of a having to care for another PWD, or worse still, have them care for me, means I will say alone. Dementia has complete changed my outlook on life - and not for the better. I feel I am now just waitng for it to come for me. At the moment I only have dementia memories of Mum - even when I look at old photos, it seems to be a person I don't recognise. I sincerely hope that one day I do get some happy memories back.

 

[Whisperer]

@Whisperer , I am at the beginning of this - Mum died New Year's Eve - but your words express exactly my feelings. I too have no partner or children, but the idea of a having to care for another PWD, or worse still, have them care for me, means I will say alone. Dementia has complete changed my outlook on life - and not for the better. I feel I am now just waitng for it to come for me. At the moment I only have dementia memories of Mum - even when I look at old photos, it seems to be a person I don't recognise. I sincerely hope that one day I do get some happy memories back.

Dear @lollyc
Please accept my condolences for your recent loss. We each grief in different ways but perhaps I can reassure you on one point. After my mum died last February I to had only Dementia memories of the one I loved. It felt so cruel as it meant whenever I thought of mum I was reduced to tears and feeling dreadful. Yes old pictures felt like they were off a person I did not fully know anymore. Dementia destroys so much.

Over Christmas I started to find memories of lovely past ones came back to me and slowly more and more positive memories surfaced, which I am now recording in a book to ensure that I hold onto them. But it is still overwhelmingly tinged with sadness, loneliness and isolation. I find it hard to “fit in” with ordinary life. No partner, children and most of my friends lost over the years. I stopped trying to recontact them when I found out two had died of COVID, others retired and moved out of the area.

i fully understand your views about changing your outlook on life, not getting involved with someone and fear Dementia will one day come for you. I thought perhaps it was only me but clearly not. The sad thing is we and other single ex carers might make great partners but we dare not take the risk. Whenever I forget something I do not find it easy to laugh it off, an older generation thing, etc. I go to work then come home to an empty house, no noise, just me and the radio or TV or music centre. Days without a conversation with another person, just bad memories mostly for company. COVID restrictions are not helping, but even when society reopens I do not think I will find it easy joining in. The colour has gone out of my life.

Please go easy on yourself. Your loss is still very raw. The initial intense sense of loss will ease as months pass, but no we do not get over it. I read somewhere that we learn to live with the grief and I think that is the case, but the process is slow and very uneven. My best wishes for the changed future we both share as ex single carers.

 

[Duggies-girl]

@Whisperer My mum died 10 years ago, it was sudden even though she had been ill for a long time. I suppose we knew that she was going to die eventually but we did not expect it to happen when it did. It was awful, my dad was heartbroken and so was I but it did not seem to be an unnatural thing to happen , she had been ill and she had died but she did not have dementia, she was fine right up to the day she died. It was very sad but we were eventually able to accept that it happened and remember mum just as she had always been, we could talk about her and all the good memories.

With dad it was different, I feel like I have been robbed of something. @Jaded'n'faded said she feels wounded and that is a good description, like a wound that won't heal. Dementia picks away at us over what can be a long time and is different to any other illness. Dad had cancer as well as dementia but I could deal with the cancer, it was terminal and he would die, it was a fact and I knew it was coming and I could have dealt with it. You do your very best to help but with dementia it is never enough and it is a very strange and unnatural thing to deal with.

You lost your mum in the midst of covid which I am sure makes things worse. My dad died in February 2020 just as covid struck, he died, I planned the funeral, we had the funeral and then I went home and sat in the house just like you did, unable to meet people, go anywhere, make plans or do anything that seemed worthwhile. At least I wasn't alone as I have a husband and a son in the house but to be honest I would have liked to have had some time alone.
My dad would have said that 'you were dealt a lousy hand' and he would have been right, we all have, dementia is a rotten, nasty illness and it's no wonder that you are left in a state of shock when it ends. All you can do is take time and be kind to yourself because it wasn't your fault. I hope you find some peace of mind and some happiness.

 

[Whisperer]

@Whisperer My mum died 10 years ago, it was sudden even though she had been ill for a long time. I suppose we knew that she was going to die eventually but we did not expect it to happen when it did. It was awful, my dad was heartbroken and so was I but it did not seem to be an unnatural thing to happen , she had been ill and she had died but she did not have dementia, she was fine right up to the day she died. It was very sad but we were eventually able to accept that it happened and remember mum just as she had always been, we could talk about her and all the good memories.

With dad it was different, I feel like I have been robbed of something. @Jaded'n'faded said she feels wounded and that is a good description, like a wound that won't heal. Dementia picks away at us over what can be a long time and is different to any other illness. Dad had cancer as well as dementia but I could deal with the cancer, it was terminal and he would die, it was a fact and I knew it was coming and I could have dealt with it. You do your very best to help but with dementia it is never enough and it is a very strange and unnatural thing to deal with.

You lost your mum in the midst of covid which I am sure makes things worse. My dad died in February 2020 just as covid struck, he died, I planned the funeral, we had the funeral and then I went home and sat in the house just like you did, unable to meet people, go anywhere, make plans or do anything that seemed worthwhile. At least I wasn't alone as I have a husband and a son in the house but to be honest I would have liked to have had some time alone.
My dad would have said that 'you were dealt a lousy hand' and he would have been right, we all have, dementia is a rotten, nasty illness and it's no wonder that you are left in a state of shock when it ends. All you can do is take time and be kind to yourself because it wasn't your fault. I hope you find some peace of mind and some happiness.

Dear @Duggies-girl
Thank you for your kind words. I understand the distinction you made between the death of your mum and dad. Yes I think I did get frozen in with mum dying at the height of the second COVID wave, the restrictions, the delay and limited funeral, etc. To be honest a year of shielding with mum beforehand took a high mental toll as well. I would like to seek help discussing some of these things but there is nowhere. I tried telephone therapy and it did not help. CRUISE locally have such a long waiting list they are not adding anyone new to it. Just seems I need t process matters as best I can and make peace with what happened.

You are right about Dementia being a uniquely bad way to die and to care for someone. I keep telling myself mum is beyond the reach of that illness now which helps somewhat, but the memories of her last days and then being totally cut off from direct human contact was really hard. At the funeral everyone upset, but having to speedily get into their cars because the next service is due, going home alone, all the normal rituals to help process a death just felt like a bad nightmare.

Any way I read your wise posts here over several years. Part of me strangely almost thinks I know you as we shared so many memories in our caring roles. That is the strange but wonderful thing about this forum. Strangers brought together in terrible circumstances, able to reach out and help and support others. I hope your future years are good ones. May you know the years. A polite Irish way of saying please live a long life.

 

[Whisperer]

Dear All

Here I find myself nearly two years after my last entry on this thread.

Next Friday it will be three years since mum died in hospital. Although I have made some progress getting jobs done around the house, settled back into working life, etc, my sense of loss just will not leave me. I no longer have the initial intense grief but my sense of loss, loneliness, sadness, of feeling incomplete, life lacking colour or a sense of purpose are always there in the background. Christmas Day, mum’s birthday and the anniversary of her death are tough to deal with. They just magnify the loss although I tell myself mum would want me to enjoy them as any other day.

I find it hard still to relax and enjoy old hobbies and interests. I think a lengthy caring role put me mentally into a frame of mind of always being on my guard for new issues to deal with. Now when I try to relax I feel guilty. At times I feel guilty as a survivor with mum now gone. No that makes no sense to me either but still the feelings are there.

I tend to be a lurker on this forum but comment where I think I might be able to do some good. I wish you all the best in your on going efforts to do your best for your loved ones. Please take care of yourselves as best you can amongst the failings of the overstretched health service and most of society either not understanding the difficulties of Dementia care or perhaps doing so but choosing to walk on by.

 

[SeaSwallow]

Oh dear @Whisperer my heart goes out to you. I have read some of your supportive comments to our members and they are always full of compassion. Now it is time for you to show some of that compassion to yourself. Please don't feel guilty when you try to relax or because you are a survivor. You did an amazing job looking after your mum, now you need to look after yourself. Take care.

 

[Chizz]

I've read this thread @Whisperer

In caring for a PWD there is no great help for the carer as carer or as a person, and you point out eloquently that there is no real help for an ex-carer - so no change there.

My OH is still with me in body, if not in mind or bodily functions, so I have not suffered the loss you describe as a carer. However, I have been grieving for some while and even had counselling to try and help, and it did a bit. The full time full on 27/7/365 caring takes its toll and I'm sure I'm no longer the person I once was.
It's amazing how little value society puts on caring or carers.

I hope that you will find your way out of the fog, even if you feel you'll never quite fit in the care free world we all once inhabited. Take your time. Be easy on yourself. You know you did the best you could.

 

[Tired Poet]

Whisperer, this is so eloquent and so sad. It clearly resonates with so many of us who have been through this, and have posted on here. Thank you so much for writing this and yes, it does help, although painfully true.

My mother died on new year’s day a year ago. Her anniversary was tough, and Christmas was tough as she had suddenly deteriorated just before last Christmas and transferred to a nursing home for end of life care. This Christmas I had covid and had to stay on my own rather than infect my partner and his Mum, but at least it gave me some reflection time and quiet. I have been feeling so tired this month and I don’t really know how much is post covid and how much the weight of the anniversary, plus struggles with partner’s mother’s situation.

It is some comfort to know that people feel able to share on here as it is such a lonely place in that fog, never knowing when it is going to clear or come down again. I need a new pair of fog lamps to get through. I hope you find some for yourself. Take care, drive steadily.

 

[Kevinl]

WOW, that's it whisperer, just keep on trucking, who knows what the future holds.
K