The steps are getting steeper.

[SAP]

Today was the first time I visited mum where there was no recognition at all. In the last two months she has declined quite steeply. She will no longer weight bear , is refusing food and somewhere inside I saw the light had gone off in her eyes.
Despite my years of knowledge and experience of dementia, nothing in the world prepares you for looking at a loved one and realising they have no clue who you are.
I’ve been thinking a lot about The Long Goodbye campaign, I have no pearls of wisdom on that score but I do know that without this forum I would be feeling so alone right now. I am grateful to those who have gone before me and sad for those who will follow. I used to advise carers at the beginning of their dementia journey not to read too far into the future as they would scare themselves silly but that when the time came it would be beneficial to know that others have stood where they are.
And so it begins, this end stage that has no limits or time frame. I’m dreading it if I’m honest but here we go.
( NB the home are making regular checks for infection, mum can still swallow and will take fluid, she will allow a small amount of food , usually in the evening but needs to be fed. The carers and nursing staff are amazing. )

 

[DeeCee7]

Oh @SAP that’s a milestone you didn’t want to reach. I haven’t got there yet myself. As you say, nothing prepares you, how can it, but it’s a gut wrenching moment and I am glad you chose to share it here. Sending you warmest thoughts.

 

[canary]

Im sorry
There is nothing more I can say
(((((((((((((((((((((((((((hugs))))))))))))))))))))))))

 

[marieantoinette]

Hi @SAP Your post really resonated with me today. I visited Mum yesterday having been on holiday and she seemed much frailer. Still understood she knew me, but not sure how. Just drifted in and out of sleep, didn't leave her bed and was unable to talk or understand what I said.

I've been having a really hard time with it all lately - she's in a care home (6 years) but all the visiting is down to me. Having had a break I felt really differently about it: I think somehow I've accepted it and have divorced myself from it all. We have been having a very long goodbye for years now and I've finally come to an acceptance. I've neglected my husband, my children and myself over the last five years by trying to look after mum and I think I have to say 'enough' now.

The reality is that this could go on for years yet and, if I'm not careful, my own old age (I'm retired) will have drifted away looking after mum. I'm going to try to reframe our relationship - more practical, less emotional - and feel less guilt about living my life. I think I give myself permission to visit less, although I'm not sure I will be able to maintain that.

I so wish it was over for both of our sakes. But the future is unknowable and all I can do for now is live in the present and I hope that by living my best life, I am honouring my mum. That's what she would want for me.

 

[Chizz]

Today was the first time I visited mum where there was no recognition at all. In the last two months she has declined quite steeply. She will no longer weight bear , is refusing food and somewhere inside I saw the light had gone off in her eyes.
Despite my years of knowledge and experience of dementia, nothing in the world prepares you for looking at a loved one and realising they have no clue who you are.
I’ve been thinking a lot about The Long Goodbye campaign, I have no pearls of wisdom on that score but I do know that without this forum I would be feeling so alone right now. I am grateful to those who have gone before me and sad for those who will follow. I used to advise carers at the beginning of their dementia journey not to read too far into the future as they would scare themselves silly but that when the time came it would be beneficial to know that others have stood where they are.
And so it begins, this end stage that has no limits or time frame. I’m dreading it if I’m honest but here we go.
( NB the home are making regular checks for infection, mum can still swallow and will take fluid, she will allow a small amount of food , usually in the evening but needs to be fed. The carers and nursing staff are amazing. )

Hi @SAP
wishing you strength and peace in these difficult times. You can only go with the flow.
Best wishes and a hug.

 

[SAP]

Oh @SAP that’s a milestone you didn’t want to reach. I haven’t got there yet myself. As you say, nothing prepares you, how can it, but it’s a gut wrenching moment and I am glad you chose to share it here. Sending you warmest thoughts.

Thank you,it's been a sobering day.

 

[SAP]

Im sorry
There is nothing more I can say
(((((((((((((((((((((((((((hugs))))))))))))))))))))))))

Thank you 🙏

 

[SAP]

Hi @SAP
wishing you strength and peace in these difficult times. You can only go with the flow.
Best wishes and a hug.

Thanks for that, yes I think peace is the key.

 

[SAP]

Hi @SAP Your post really resonated with me today. I visited Mum yesterday having been on holiday and she seemed much frailer. Still understood she knew me, but not sure how. Just drifted in and out of sleep, didn't leave her bed and was unable to talk or understand what I said.

I've been having a really hard time with it all lately - she's in a care home (6 years) but all the visiting is down to me. Having had a break I felt really differently about it: I think somehow I've accepted it and have divorced myself from it all. We have been having a very long goodbye for years now and I've finally come to an acceptance. I've neglected my husband, my children and myself over the last five years by trying to look after mum and I think I have to say 'enough' now.

The reality is that this could go on for years yet and, if I'm not careful, my own old age (I'm retired) will have drifted away looking after mum. I'm going to try to reframe our relationship - more practical, less emotional - and feel less guilt about living my life. I think I give myself permission to visit less, although I'm not sure I will be able to maintain that.

I so wish it was over for both of our sakes. But the future is unknowable and all I can do for now is live in the present and I hope that by living my best life, I am honouring my mum. That's what she would want for me.

Hello @marieantoinette , you are right, I’m sure our mums would not want us putting life on hold, infact my mum told me not to. The guilt is ridiculous though as every carer knows.

 

[Woody54321]

Thank you for this post and to all who have replied, I am in exactly the same position, it's very hard but there is a comfort that I am not alone. I bounce from feeling that I am not doing enough as a daughter to realising that my family need me too. I know that mum is receiving the best of care which I could not provide and I sit with her twice a week as her care home is some distance away. I am not sure she is taking anything in as there is no response or at least nothing understandable and she sleeps a lot. She is comfortable and not in pain or distressed which is a good thing sadly for her I think this is going to last some time. It's amazing how quickly time passes and I think that we all should take time for ourselves as we won't get it back. So big hugs to everyone here.

 

[sdmhred]

We’re here ‘with you’ @SAP and @Woody54321

Much love to you both.

 

[SAP]

We’re here ‘with you’ @SAP and @Woody54321

Much love to you both.

Thank you. ☺️

 

[SAP]

@Woody54321, it’s tough isn’t it. I hadn’t seen mum for a few weeks because I had the lurgy and wouldn’t wish it on any one but that didn’t stop me feeling I needed to ring the home and explain or go an see mum. It’s a weird limbo and yes it could last a while. Mum always told me to concentrate on the living , I’m not liking the alternative but it’s a good point.

 

[Woody54321]

We’re here ‘with you’ @SAP and @Woody54321

Much love to you both.

Thank you xx

 

[Woody54321]

@Woody54321, it’s tough isn’t it. I hadn’t seen mum for a few weeks because I had the lurgy and wouldn’t wish it on any one but that didn’t stop me feeling I needed to ring the home and explain or go an see mum. It’s a weird limbo and yes it could last a while. Mum always told me to concentrate on the living , I’m not liking the alternative but it’s a good point.

Deep breath and carry on, best we can do xx

 

[JoannePat]

Oh @SAP I really do feel your pain and know that we are all thinking of you. This forum got me through some tough days with my mum and I have come back for getting me through the rough days with my dad.

Hugs and loves, Jxx

 

[Grannie G]

There comes a time when an unexpected realisation stops us in our tracks and it sounds as if that time came for you yesterday @SAP

It`s not necessarily permanent as I’m sure you know, but it could be and I feel for you.

 

[Muggers]

Today was the first time I visited mum where there was no recognition at all. In the last two months she has declined quite steeply. She will no longer weight bear , is refusing food and somewhere inside I saw the light had gone off in her eyes.
Despite my years of knowledge and experience of dementia, nothing in the world prepares you for looking at a loved one and realising they have no clue who you are.
I’ve been thinking a lot about The Long Goodbye campaign, I have no pearls of wisdom on that score but I do know that without this forum I would be feeling so alone right now. I am grateful to those who have gone before me and sad for those who will follow. I used to advise carers at the beginning of their dementia journey not to read too far into the future as they would scare themselves silly but that when the time came it would be beneficial to know that others have stood where they are.
And so it begins, this end stage that has no limits or time frame. I’m dreading it if I’m honest but here we go.
( NB the home are making regular checks for infection, mum can still swallow and will take fluid, she will allow a small amount of food , usually in the evening but needs to be fed. The carers and nursing staff are amazing. )

You’re not alone, I am in exactly the same position that you are with my mum, she is cared for at home, her body is shutting down, her breathing seems heavier today and she has a pressure sore on her bottom that looks like it could break at any moment, she has had enough bless her and it is heartbreaking, there is an awful smell too in her bedroom even though bedding is changed and room is cleaned it just lingers. You wouldn’t let an animal suffer like this, she is just skin and bone. Xx

 

[SAP]

You’re not alone, I am in exactly the same position that you are with my mum, she is cared for at home, her body is shutting down, her breathing seems heavier today and she has a pressure sore on her bottom that looks like it could break at any moment, she has had enough bless her and it is heartbreaking, there is an awful smell too in her bedroom even though bedding is changed and room is cleaned it just lingers. You wouldn’t let an animal suffer like this, she is just skin and bone. Xx

Wishing you all the strength in the world @Muggers .

 

[Feeling unsupported]

Hi @SAP Your post really resonated with me today. I visited Mum yesterday having been on holiday and she seemed much frailer. Still understood she knew me, but not sure how. Just drifted in and out of sleep, didn't leave her bed and was unable to talk or understand what I said.

I've been having a really hard time with it all lately - she's in a care home (6 years) but all the visiting is down to me. Having had a break I felt really differently about it: I think somehow I've accepted it and have divorced myself from it all. We have been having a very long goodbye for years now and I've finally come to an acceptance. I've neglected my husband, my children and myself over the last five years by trying to look after mum and I think I have to say 'enough' now.

The reality is that this could go on for years yet and, if I'm not careful, my own old age (I'm retired) will have drifted away looking after mum. I'm going to try to reframe our relationship - more practical, less emotional - and feel less guilt about living my life. I think I give myself permission to visit less, although I'm not sure I will be able to maintain that.

I so wish it was over for both of our sakes. But the future is unknowable and all I can do for now is live in the present and I hope that by living my best life, I am honouring my mum. That's what she would want for me.

Thank you for this @marieantoinette, I am in exactly the same situation and it is reassuring to know that I am not the only one trying to shake off the guilt of living my own retirement, while I still can. My parents both lived life to the full at my age, travelling the world. I keep reminding myself that mum would want me to do the same. I too wish it was over, but others don't understand this and it feels heartless to admit it.