Anybody in a similar boat?

[lambchop]

Is anyone on TP, an only child and lost one or both parents, and been a full-time carer to them? Or, who here has been a long-term carer to a PWD and is now really struggling without that role? How are you coping with life without your loved one and without that caring role anymore?

I was a carer for such a long time, I find the world such a terrifying place now, if that makes any sense. I have said this before in a different post, but it just makes no sense, to have lost my purpose in life and to have so much free time - I make myself do stuff but gain very little pleasure. I lost dad in 2010 and mum in October last year - 5 months ago. Mum had dementia and I miss her so much, it literally does feel like a broken heart. I was heartbroken over dad, but this, now, having lost mum and the whole structure of my life, is like a sledgehammer has come along and crashed into my life. 5 months compared to my more than 30 years looking after someone - it simply isn't possible to feel anything but torment for the conceivable future.

 

[C14]

Hello lambchop
I am an only child, and have only been in a caring role for a short period, looking after my MIL(Alzheimers) for 3 months at her home while FIL was in hospital (Pancreatic cancer). He died Christmas Eve 2015, so we had to find a nursing home for MIL. Then 2016, looking after my Mum and Dad briefly before they both went into care, Mum (mobility and stroke issues) died September last year, Dad with Dementia is still with us.
I don't think it matters how long you have been a carer, once you take on that role your world view changes. I describe it as 'baby brain', you know, when you have had a baby they are all consuming and all you can think about.
Looking after someone who is totally dependant on you, whether 6 months or 60 years old takes a lot of your self and you do lose your own sense of purpose when they no longer need you. Dad is quite settled in his care home and doesn't need me to be there really, but I would rather sit there with him even though most of the time he is asleep, than face the world outside. Since Mum died I have developed a kind of separation anxiety with Dad. When I don't visit him, which is only every other day at the moment, I have to busy myself and go places. Otherwise I think, I could just pop and see him, which is a twenty five minute car journey!
Five months after losing your Mum is not very long for you to think you should be feeling anything other than devastated, you have to give yourself time to come to terms with the enormity of the situation and give yourself permission to grieve. That will be the first, and most important thing that you can do for yourself. Then, when the time is right for you, life will resume and you will feel in a stronger place to deal with it.
I have a book called 'Letting go of the person you use to be' by Lama Surya Das. It is a good book for dealing with change and loss, I have mentioned it in another post somewhere.
Also, I have a notebook that I write in whenever I feel the need to 'offload' anything. Whether it's good or bad feelings, questions, statements, anything that comes to mind that I need to get out of my head. I call it my bereavement therapy book, and I have a photo of Mum in the back. It just helps to deal with the feelings, both physical and mental. I couldn't believe how physical grief could be, and it's no good storing it all up that just leads to more grief!
Sorry this is such a long post, but hope some of it is helpful xx

 

[Amy in the US]

I am not where I can reply fully but did not want to read and run.

I'm an only child, my parents divorced when I was quite young, and my father died 20 years ago. My mother was diagnosed with dementia 3 years ago, but was affected years before. She is also an only child. She is in a care home near where I live.

Five months is not very long, as grief goes, and I am not surprised you still feel so raw.

Would you consider someone to talk to? A therapist or counselor or similar? It has been a huge help for me with grief and parent and dementia issues.

Do try to be kind to yourself and remember that you, like all of, are an important person in your own right, not just in relation to others. I do know that it's not easy, and I'm sorry. Best wishes to you.

 

[lambchop]

Hi C14 and Amy in the US

Thank you very much for your replies. And for joining the only-child club!

I am very sorry for your losses.

C14, you make a good point - it doesn't make a difference how long you have been a carer; it's how it affects you as an individual. There are probably plenty of carers who struggle hugely with the loss of their role - I just haven't found many of them. I keep looking; I don't know what I'm looking for exactly, but I just feel so alone.

I went to an ex-carers' group a couple of times, but all they do is have a chat about day-to-day stuff. One of them said she doesn't miss caring, which was a bit of shock to me.

C14 - I will look into the book you recommended - thank you. I have started a journal which I will try and keep going.

Amy - thank you for your kind words. They will hopefully make sense to me in time. The idea of self-worth is such a difficult concept to understand and put into practice, but, as you say, 5 months is nothing. I am seeing a therapist and it's helpful when I'm there but all the rest of the hours of the day and week are just full of pain.

Thank you both for your kindness.

 

[ianrut]

Hi C14 and Amy in the US

Thank you very much for your replies. And for joining the only-child club!

I am very sorry for your losses.

C14, you make a good point - it doesn't make a difference how long you have been a carer; it's how it affects you as an individual. There are probably plenty of carers who struggle hugely with the loss of their role - I just haven't found many of them. I keep looking; I don't know what I'm looking for exactly, but I just feel so alone.

I went to an ex-carers' group a couple of times, but all they do is have a chat about day-to-day stuff. One of them said she doesn't miss caring, which was a bit of shock to me.

C14 - I will look into the book you recommended - thank you. I have started a journal which I will try and keep going.

Amy - thank you for your kind words. They will hopefully make sense to me in time. The idea of self-worth is such a difficult concept to understand and put into practice, but, as you say, 5 months is nothing. I am seeing a therapist and it's helpful when I'm there but all the rest of the hours of the day and week are just full of pain.

Thank you both for your kindness.

 

[ianrut]

I HAVE Lost my wife , she is no longer with me.Aftertwo terrible years caring for her as she got worse , I could no longer cope 24/7 and she is now in a home. I go to see her most days, but it is not my beloved Mary who I married 58 years ago. I am so sad and lonely particularly at night .
How are you guys out there managing ?

 

[Selinacroft]

Hi Lambchop and all, firstly sorry for your loss, it is early days still. I lost dad in December, not an only child but was the only carer and not close to siblings.
It feels like I need to reinvent myself all over again, I had my career in finance- no wish to return, my caring for Dad and part time for care company alongside and now- the world is my oyster so to speak. Still completely undecided whether to stay and work to earn enough to stay in family home (my only home ever) or sell, split proceeds and go and buy my own place somewhere- but where? and doing what- no long term ideas at all.
I don't feel "grief stricken" as I did all I could possibly have done and more ten times over , and dad "had a good innings" and I had lost the real dad gradualy over the last few years but an empty schedule lies ahead for me with only me deciding what to do with it and it feels like staring at a full set of Encyclopedia Brittanica where all the pages are blank and I have to fill them in ---with something.
I couldn't sleep well last night with the - do I move question floating around in my head.
Dad told me never to be stupid enough to sell the house- but he didn't leave it to me did he- so I only have half. Stupid Dad kind of sums that up!.

 

[lambchop]

I HAVE Lost my wife , she is no longer with me.Aftertwo terrible years caring for her as she got worse , I could no longer cope 24/7 and she is now in a home. I go to see her most days, but it is not my beloved Mary who I married 58 years ago. I am so sad and lonely particularly at night .
How are you guys out there managing ?

I am so sorry inarut. You probably feel a sense of bereavement even though your wife is alive, because dementia has taken away the woman you married. I hope your wife still recognises you and gets comfort from your visits. It must be incredibly lonely without her. I can't give you any good advice but others will be able to. You may find more help if you re-post on the 'I have a partner with dementia' forum.

 

[lambchop]

Hi Lambchop and all, firstly sorry for your loss, it is early days still. I lost dad in December, not an only child but was the only carer and not close to siblings.
It feels like I need to reinvent myself all over again, I had my career in finance- no wish to return, my caring for Dad and part time for care company alongside and now- the world is my oyster so to speak. Still completely undecided whether to stay and work to earn enough to stay in family home (my only home ever) or sell, split proceeds and go and buy my own place somewhere- but where? and doing what- no long term ideas at all.
I don't feel "grief stricken" as I did all I could possibly have done and more ten times over , and dad "had a good innings" and I had lost the real dad gradualy over the last few years but an empty schedule lies ahead for me with only me deciding what to do with it and it feels like staring at a full set of Encyclopedia Brittanica where all the pages are blank and I have to fill them in ---with something.
I couldn't sleep well last night with the - do I move question floating around in my head.
Dad told me never to be stupid enough to sell the house- but he didn't leave it to me did he- so I only have half. Stupid Dad kind of sums that up!.

Thanks selinacroft. I am also very sorry for your recent loss. I'm glad you seem to be coping with the grief - I wish I could cope. Regarding the house, a new beginning can be a good thing, especially if there are no other solutions. You alluded ot an empty schedule but it seems that working out what to do with your home is a big enough task to occupy you (and drive you mad!). I may have to leave my family home (not my choice) so I have an understanding of the issues you are facing. It's not easy and I wish you luck. Let me know how it goes with reinventing yourself!

 

[Hazara8]

Is anyone on TP, an only child and lost one or both parents, and been a full-time carer to them? Or, who here has been a long-term carer to a PWD and is now really struggling without that role? How are you coping with life without your loved one and without that caring role anymore?

I was a carer for such a long time, I find the world such a terrifying place now, if that makes any sense. I have said this before in a different post, but it just makes no sense, to have lost my purpose in life and to have so much free time - I make myself do stuff but gain very little pleasure. I lost dad in 2010 and mum in October last year - 5 months ago. Mum had dementia and I miss her so much, it literally does feel like a broken heart. I was heartbroken over dad, but this, now, having lost mum and the whole structure of my life, is like a sledgehammer has come along and crashed into my life. 5 months compared to my more than 30 years looking after someone - it simply isn't possible to feel anything but torment for the conceivable future.

 

[Hazara8]

Is anyone on TP, an only child and lost one or both parents, and been a full-time carer to them? Or, who here has been a long-term carer to a PWD and is now really struggling without that role? How are you coping with life without your loved one and without that caring role anymore?

I was a carer for such a long time, I find the world such a terrifying place now, if that makes any sense. I have said this before in a different post, but it just makes no sense, to have lost my purpose in life and to have so much free time - I make myself do stuff but gain very little pleasure. I lost dad in 2010 and mum in October last year - 5 months ago. Mum had dementia and I miss her so much, it literally does feel like a broken heart. I was heartbroken over dad, but this, now, having lost mum and the whole structure of my life, is like a sledgehammer has come along and crashed into my life. 5 months compared to my more than 30 years looking after someone - it simply isn't possible to feel anything but torment for the conceivable future.

Being an only child compounds the situation, simply because you are the sole being now coping with the loss of a parent. You and you alone carried out that caring role. The commitment, which is total and long-lived, especially in respect of dementia and the care entailed, embraces one's life in a way which at the time is not always obvious, yet is deep in its effect on your body and soul. This becomes a kind of 'norm', the daily caring, the constant 'thinking', the actual 'duties' (cooking, medication, clean linen, fresh pads etc., etc) all of which creates that special 'bond' between child and parent, now become 'parent and child' (daughter caring for mother). This bond endures in a manner which seems to override self worth or endeavour, in as much as you don't really live a life outside that caring role. Despite hardships and trauma, mixed with genuine uplifting moments, despite all the anxieties and difficulties entailed, that 'love' for a parent, especially a mother, remains intact and more potent as the years go on. Then, one day, it simply stops. Therein lies the crux of the matter. Where do you go? Mentally? To what now, do you apply all that endeavour, that ongoing caring? The bereavement is compounded by that profound sense of 'nothingness'. The world goes on all around you, which is intimidating. The only friend you had in the world, the one you cared for, is no longer there. All of this seems, at the moment, hopeless, perhaps unending. Yet it will change. You have cared for a mother all this time. Yes - You. Despite her dementia, you will know about the good times with your mother, those special moments that only a daughter and mother relate to. At the time, which is all we ever really have - the here and now - you will have done all that is possible, met the challenges, day to day. In that caring, you sow the seed, which will blossom unexpectedly. The fragrance of which evolves out of all that loving care. None of that can be ever taken away. That is what truly matters in all, of this. You should not battle with, nor try to ignore despair. But there is a real and profound 'joy' in truly coming to terms with the sheer worth of all those years, the essence of which only you will know about. That 'essence' is your purpose in life and a very meaningful purpose too. Embrace it.

 

[Fullticket]

So sorry for your loss. I am doing my usual speed reading of the morning and did not want to rush off without just empathising with you - so sorry if people have said this before.
Mum died just over a month ago and I can understand how you feel because I am at a bit of a loss at the moment. What is my purpose now? I decided five years ago not to take a job offer but to retire early and look after mum (I have one sibling but he has six kids and I can understand he was a bit reluctant). I had mum come to live with me, we moved house to accommodate her (though tbh as I had retired I was going to move out of London anyway).
It was not dementia that took her but a physical illness and all a bit quick. I had planned on putting her into care this summer/autumn having put in as much as I could and suffering from a bit of carer's meltdown/burnout. Mum would have been happy enough as it was all planned for her to go to the care home where she had been for respite and went for day care, ten minutes drive away. Then she died.
I have friends, I have plans to get back to walking, Pilates, yoga, do something at evening class but it is a struggle getting it together - all these new faces and places all at the same time. I have left it until after Easter and told myself that getting the figures together for probate, etc. are not the main priority. I will get through it because I am gregarious enough to push myself but I was not prepared to feel so lost, inadequate and un-needed so suddenly.

 

[ianrut]

I am so sorry inarut. You probably feel a sense of bereavement even though your wife is alive, because dementia has taken away the woman you married. I hope your wife still recognises you and gets comfort from your visits. It must be incredibly lonely without her. I can't give you any good advice but others will be able to. You may find more help if you re-post on the 'I have a partner with dementia' forum.

Hello lambchop Thank you . How do I find the forums ? only just joined .I will go back to the home page.

 

[lambchop]

So sorry for your loss. I am doing my usual speed reading of the morning and did not want to rush off without just empathising with you - so sorry if people have said this before.
Mum died just over a month ago and I can understand how you feel because I am at a bit of a loss at the moment. What is my purpose now? I decided five years ago not to take a job offer but to retire early and look after mum (I have one sibling but he has six kids and I can understand he was a bit reluctant). I had mum come to live with me, we moved house to accommodate her (though tbh as I had retired I was going to move out of London anyway).
It was not dementia that took her but a physical illness and all a bit quick. I had planned on putting her into care this summer/autumn having put in as much as I could and suffering from a bit of carer's meltdown/burnout. Mum would have been happy enough as it was all planned for her to go to the care home where she had been for respite and went for day care, ten minutes drive away. Then she died.
I have friends, I have plans to get back to walking, Pilates, yoga, do something at evening class but it is a struggle getting it together - all these new faces and places all at the same time. I have left it until after Easter and told myself that getting the figures together for probate, etc. are not the main priority. I will get through it because I am gregarious enough to push myself but I was not prepared to feel so lost, inadequate and un-needed so suddenly.

So sorry for your loss fullticket. What you say about inadequacy really resonnates with me. I'm glad you have hopefully good friends who will support you as much as you need. And it's good that you feel you have plans you could make, once you feel up to it. You must go at your own pace and not place high expectations on yourself. But I so understand the feelings of loss and feeling lost. I was so used to having only a few hours each week to go out and do things, that I now feel like I don't know how to be around people for any length of time. If you like, I had an escape route with my caring role and now it feels like I'm on a ship in the stormiest sea.

Good luck to you.

 

[lambchop]

Being an only child compounds the situation, simply because you are the sole being now coping with the loss of a parent. You and you alone carried out that caring role. The commitment, which is total and long-lived, especially in respect of dementia and the care entailed, embraces one's life in a way which at the time is not always obvious, yet is deep in its effect on your body and soul. This becomes a kind of 'norm', the daily caring, the constant 'thinking', the actual 'duties' (cooking, medication, clean linen, fresh pads etc., etc) all of which creates that special 'bond' between child and parent, now become 'parent and child' (daughter caring for mother). This bond endures in a manner which seems to override self worth or endeavour, in as much as you don't really live a life outside that caring role. Despite hardships and trauma, mixed with genuine uplifting moments, despite all the anxieties and difficulties entailed, that 'love' for a parent, especially a mother, remains intact and more potent as the years go on. Then, one day, it simply stops. Therein lies the crux of the matter. Where do you go? Mentally? To what now, do you apply all that endeavour, that ongoing caring? The bereavement is compounded by that profound sense of 'nothingness'. The world goes on all around you, which is intimidating. The only friend you had in the world, the one you cared for, is no longer there. All of this seems, at the moment, hopeless, perhaps unending. Yet it will change. You have cared for a mother all this time. Yes - You. Despite her dementia, you will know about the good times with your mother, those special moments that only a daughter and mother relate to. At the time, which is all we ever really have - the here and now - you will have done all that is possible, met the challenges, day to day. In that caring, you sow the seed, which will blossom unexpectedly. The fragrance of which evolves out of all that loving care. None of that can be ever taken away. That is what truly matters in all, of this. You should not battle with, nor try to ignore despair. But there is a real and profound 'joy' in truly coming to terms with the sheer worth of all those years, the essence of which only you will know about. That 'essence' is your purpose in life and a very meaningful purpose too. Embrace it.

Dear Hazara8,

I had to read your beautiful post several times to be able to fully take it in. You must be writer or a poet to be able to write such prose. And, more amazingly, you captured the crux of what I'm feeling, but in a much more articulate and poetic way than I could imagine.

I wish I could write an appropriate reply but your post has left me lost for words (not in a bad way though!)

All I can say is you are so right about not fighting these despairing feelings but allowing them to 'be', to expect that I will feel desolate - it's totally understable. And, in time, maybe I will find 'me'; my own identity. But now, I miss, miss, miss mum beyond any reasonable words and that has to come first.

Lastly, thank you so much for taking the time to write such a meaningful post - I am really touched.

 

[Hazara8]

Dear Hazara8,

I had to read your beautiful post several times to be able to fully take it in. You must be writer or a poet to be able to write such prose. And, more amazingly, you captured the crux of what I'm feeling, but in a much more articulate and poetic way than I could imagine.

I wish I could write an appropriate reply but your post has left me lost for words (not in a bad way though!)

All I can say is you are so right about not fighting these despairing feelings but allowing them to 'be', to expect that I will feel desolate - it's totally understable. And, in time, maybe I will find 'me'; my own identity. But now, I miss, miss, miss mum beyond any reasonable words and that has to come first.

Lastly, thank you so much for taking the time to write such a meaningful post - I am really touched.

Thank you for taking the time to deliver such a heart-warming response. You flatter me, but it was your words which brought about any meaningful response from myself. Your story touched me in that way which evokes a kind of recognition of truth, told purely from the heart and an expression of all the best we have in our humanity. That in itself, will carry you through the forest of despair and into the light. And you already have embarked upon that journey, because you have accepted that strangely uncompromising companion - missing mum - on the way. With my warmest wishes and thanks.

 

[lambchop]

Thank you for taking the time to deliver such a heart-warming response. You flatter me, but it was your words which brought about any meaningful response from myself. Your story touched me in that way which evokes a kind of recognition of truth, told purely from the heart and an expression of all the best we have in our humanity. That in itself, will carry you through the forest of despair and into the light. And you already have embarked upon that journey, because you have accepted that strangely uncompromising companion - missing mum - on the way. With my warmest wishes and thanks.

Thank you SO much. If you aren't a writer, you should be one, or even a counsellor..... How do you know what to say - you captured my feelings with such empathy and care. With warmest wishes back

 

[lambchop]

I wanted to ask how much difficulty carers have had in finding employment after their caring role has gone. How long did it take you to find something suitable?

I have applied for a several jobs and not had any luck. No real surprise there given the job market but I am 49 and I wonder how many opportunites there are if you are older. I have a pre-existing admin job in an office but this is only 7 hours and I can't get any further hours there. The application process nowadays is so onerous and time-consuming that it's a wonder anyone gets a job.

I am grieving for my dear mum and so I am finding applying for jobs hard but push myself to do it - it is very tiring though and when you don't get a reply, let alone an interview, you wonder where to get persevereance from.

I know I could get care work, no problem, but this is the last thing I want to do right now, especially as I was a carer for so long.

Any experiences or suggestions would be welcome.

 

[DeMartin]

I wanted to ask how much difficulty carers have had in finding employment after their caring role has gone. How long did it take you to find something suitable?

I have applied for a several jobs and not had any luck. No real surprise there given the job market but I am 49 and I wonder how many opportunites there are if you are older. I have a pre-existing job in an office but this is only 7 hours and I can't get any further hours there. The application process nowadays is so onerous and time-consuming that it's a wonder anyone gets a job.

I am grieving for my dear mum and so I am finding applying for jobs hard but push myself to do it - it is very tiring though and when you don't get a reply, let alone an interview, you wonder where to get persevereance from.

I know I could get care work, no problem, but this is the last thing I want to do right now, especially as I was a carer for so long.

Any experiences or suggestions would be welcome.

Think of the advantages you offer an employer, you are past the age of “too hungover to work”, “he dumped me”. You may not be able to get a job that stretches your abilities, but consider other jobs, I gave up nursing and worked retail in a high street store, the bliss of no major decisions, no critical errors, I cut fabric. I had people to meet, colleagues to chat to, gossip about life .....trivial frequently but “ normal”. Gets you out and about. Money is not good but better than 7 hours (unless you are a premier league football player)

 

[DeMartin]

Think of the advantages you offer an employer, you are past the age of “too hungover to work”, “he dumped me”. You may not be able to get a job that stretches your abilities, but consider other jobs, I gave up nursing and worked retail in a high street store, the bliss of no major decisions, no critical errors, I cut fabric. I had people to meet, colleagues to chat to, gossip about life .....trivial frequently but “ normal”. Gets you out and about. Money is not good but better than 7 hours (unless you are a premier league football player)

Sorry, I have no idea of your current job, you may be a $1000 hour something, but my message is....start meeting people through work, move up and out, until you find your personal niche.