EoL - what to expect!?

[bluemoon25]

Hi everyone!

Perhaps this is more a vent than asking for advice/experiences but I need to write this down somewhere

My Nan has dementia. The last year it has been a rapid decline though. She fell and fractured her hip in October and had to have an emergency half hip replacement but things have deteriorated rapidly since then.

We finally got her out of hospital after 6 weeks into an interim care facility and she stayed there for a month before we managed to get her into her wonderful nursing home just after Christmas. She has been unable to walk ever since but still vaguely talkative but she started slowly going downhill 2 weeks ago (struggling to talk anymore etc).

Roll forward to the early hours of Saturday morning when we got a call from the home asking us to all get in asap as Nan had taken a turn for the worse. We got there and she could no longer speak, her breathing had changed and she was barely moving. My grandfather said she had started having trouble swallowing mid week and was only having a spoonful of food per meal anyway but she had refused drink and food since Friday and the staff acknowledged that she all of a sudden couldn’t swallow anymore.

We have spent Saturday, Sunday and today with her as we have been told she is on her last legs. Although she was looking around the room on Saturday and moving her hand, over the day, that all slowed down and then stopped a few hours before we left. Sunday there was no response at all and the same today but today, her breathing is much deeper and it’s much hard work for her. It’s like her mind completely shut down a few hours before we left on Saturday and now it’s just her body left.

The doctor is in every day and it is end of life care now. We were fully expecting her to go Saturday night but she is holding on. The doctor has said today that the only thing keeping her going is her heart atm and they have given her 24-48 hours.

I feel so horrible. I’m mentally and physically exhausted. I’m spending all day there from 9am - 7pm and then home to put my two little boys to bed who are also struggling with this. I am barely sleeping as well as am just waiting for a call in the night which has not come. Luckily, my work have been amazing and I am on compassionate leave atm but am due back next week.

I have to say that it is pure torture watching her deteriorate every day. It is awful to see my grandfather in pieces as well. He has been the most amazing husband and has been by her side every single day in hospital and in the two homes but he is also at a point of breaking now with the waiting and uncertainty. I love my Nan dearly and I miss her so much but is it awful of me to say that for her sake and for the rest of us, I wish she would slip away warm in her bed knowing we are there around her instead of this prolonged agony? I spoke to someone I know in passing the other day on the way to visit her (I wish I hadn’t!) and was told how cruel I am for wishing my Nan would just die 😭 I have never felt so awful in all my life. I don’t want her to die but I also know that she never would have wanted this either.

The staff at the care home are amazing but even they are surprised that she is still hanging on.

We are all so so tired and even though we keep being told she is not expected to last the day, she just hangs in there. She was always a rather stubborn lady when she was well but I am also fully aware how scared she was of dying which is why we are all there comforting her every day and trying to reassure her that we will all be ok.

We have been told that in extreme circumstances, she could go up to 2 weeks without food and water but the doctor has said probably 24-48 hours now. Has anyone else had any experience of this at all though? I know everyone is different but it would be good to hear of other people’s experiences.

Sorry for the vent, I just am so so tired physically and emotionally and I don’t know when this will come to it’s sad conclusion.

Thanks

 

[Grannie G]

Welcome @bluemoon25

Staying with your nan for so long every day is far too much for anyone, never mind someone who has young children to attend to.

Could you take it in turns with your grandfather and any other family members to be with her?

From experience and posts by other members, however long you stay by the bedside, your nan could die while you go to the toilet.

Take no notice of the person passing judgement on you. We on this forum understand how you feel because we have lived through the experience. Be careful who you share with. Some people are hopeless.

 

[canary]

Hello @bluemoon25

Im so sorry to hear about your nan and that she has reached this stage.
You are living in limbo now and are into the last long vigil. Im afraid that this is what happens when someone dies from dementia - it is neither quick nor pretty.

My mum died in very similar circumstances. She fell and broke her hip. She had surgery to repair the fracture, but it was the beginning of the end. She stopped eating and drinking - in fact she went 17 days with no food or fluid at all.

The family was called in about a week before she died when there was sudden deterioration and she became semiconscious. At the time I was in London with OH who had been admitted for tests and I wasnt sure whether I would get back in time. I did, though, and left OH at home, spending three days and nights in mums room in her care home sleeping on the floor. When I arrived mum was being given painkillers by injection, but within fairly short time she was given a syringe driver.

I found those last days harrowing. The physical changes can be traumatic to see, especially if you are not expecting them. Mums limbs grew cold, her breathing changed so that there were gaps between breaths, her skin became mottled, her eyes became opaque and as she had stopped eating and drinking she had lost a huge amount of weight. I did not know how she was still alive.

I understand entirely the feeling that you hope your nan will die soon. I both hoped mum would die and feared that she would. The anguish was dreadful.
Stay strong. There will be an end
(((((((((((((((((hugs)))))))))))))))))))

 

[CAL Y]

I’m absolutely incensed that someone could call you cruel for wishing that your Nan would slip away sooner rather than later.
That person has no concept whatsoever of what we relatives of people with dementia go through at the end.

Please try not to feel bad about wanting it to be over. There can’t be many on this forum who haven’t had exactly the same feeling.
Wishing you strength to get through this.

 

[special 1]

Hi everyone!

Perhaps this is more a vent than asking for advice/experiences but I need to write this down somewhere

My Nan has dementia. The last year it has been a rapid decline though. She fell and fractured her hip in October and had to have an emergency half hip replacement but things have deteriorated rapidly since then.

We finally got her out of hospital after 6 weeks into an interim care facility and she stayed there for a month before we managed to get her into her wonderful nursing home just after Christmas. She has been unable to walk ever since but still vaguely talkative but she started slowly going downhill 2 weeks ago (struggling to talk anymore etc).

Roll forward to the early hours of Saturday morning when we got a call from the home asking us to all get in asap as Nan had taken a turn for the worse. We got there and she could no longer speak, her breathing had changed and she was barely moving. My grandfather said she had started having trouble swallowing mid week and was only having a spoonful of food per meal anyway but she had refused drink and food since Friday and the staff acknowledged that she all of a sudden couldn’t swallow anymore.

We have spent Saturday, Sunday and today with her as we have been told she is on her last legs. Although she was looking around the room on Saturday and moving her hand, over the day, that all slowed down and then stopped a few hours before we left. Sunday there was no response at all and the same today but today, her breathing is much deeper and it’s much hard work for her. It’s like her mind completely shut down a few hours before we left on Saturday and now it’s just her body left.

The doctor is in every day and it is end of life care now. We were fully expecting her to go Saturday night but she is holding on. The doctor has said today that the only thing keeping her going is her heart atm and they have given her 24-48 hours.

I feel so horrible. I’m mentally and physically exhausted. I’m spending all day there from 9am - 7pm and then home to put my two little boys to bed who are also struggling with this. I am barely sleeping as well as am just waiting for a call in the night which has not come. Luckily, my work have been amazing and I am on compassionate leave atm but am due back next week.

I have to say that it is pure torture watching her deteriorate every day. It is awful to see my grandfather in pieces as well. He has been the most amazing husband and has been by her side every single day in hospital and in the two homes but he is also at a point of breaking now with the waiting and uncertainty. I love my Nan dearly and I miss her so much but is it awful of me to say that for her sake and for the rest of us, I wish she would slip away warm in her bed knowing we are there around her instead of this prolonged agony? I spoke to someone I know in passing the other day on the way to visit her (I wish I hadn’t!) and was told how cruel I am for wishing my Nan would just die 😭 I have never felt so awful in all my life. I don’t want her to die but I also know that she never would have wanted this either.

The staff at the care home are amazing but even they are surprised that she is still hanging on.

We are all so so tired and even though we keep being told she is not expected to last the day, she just hangs in there. She was always a rather stubborn lady when she was well but I am also fully aware how scared she was of dying which is why we are all there comforting her every day and trying to reassure her that we will all be ok.

We have been told that in extreme circumstances, she could go up to 2 weeks without food and water but the doctor has said probably 24-48 hours now. Has anyone else had any experience of this at all though? I know everyone is different but it would be good to hear of other people’s experiences.

Sorry for the vent, I just am so so tired physically and emotionally and I don’t know when this will come to it’s sad conclusion.

Thanks

Morning. I am sorry to hear your plight. You try and stay strong for yourself and your Dad. Easier said than done. It is good to talk about how you are feeling too. Take care. 💔💔

 

[bluemoon25]

Thank you everyone for your kind words.

I really appreciate people taking the time to let me know their experiences, it makes me feel less alone to know others have sadly been in similar circumstances and they have had the same thoughts as well. I think being told I was cruel was the last nail in the coffin and has added to the sleepless nights so thank you for being so understanding. I whole heartedly agree with Canary - I don’t want her to die at all but at the same time, I don’t want her to suffer.

We decided (just after I posted this last night) that we would do half days each so that two of us would always be there but one of us could try to have a rest. This morning is my rest period and my mum and grandfather are there. However, just as I started posting this, my mother called me. The care home called them at 7am to say that she had deteriorated within 1/2 an hour so to come in urgently. My mother and grandfather are there and I have been told that her breathing has gone from deep and hard work to very rapid and almost gasps. They have asked me not to come in now as they are already finding it distressing to watch her and they don’t want me to be there to see it.

I was meant to be in there this afternoon but I will wait for news. The doctor has already been in and said it could be a good few hours still but they think today is more than likely her last day here. Im glad in a way but I am also dreading it. I also feel awful that I may not be for her in the end but also, I don’t want to see her die. But then the burden of that is on my grandfather and my mother. I feel like a child again in a way rather than a 36 year old woman with all of these feelings flying around and being unsure how to process them!

Thanks again all though. I’ll keep you updated xxx

 

[bluemoon25]

Hello @bluemoon25

Im so sorry to hear about your nan and that she has reached this stage.
You are living in limbo now and are into the last long vigil. Im afraid that this is what happens when someone dies from dementia - it is neither quick nor pretty.

My mum died in very similar circumstances. She fell and broke her hip. She had surgery to repair the fracture, but it was the beginning of the end. She stopped eating and drinking - in fact she went 17 days with no food or fluid at all.

The family was called in about a week before she died when there was sudden deterioration and she became semiconscious. At the time I was in London with OH who had been admitted for tests and I wasnt sure whether I would get back in time. I did, though, and left OH at home, spending three days and nights in mums room in her care home sleeping on the floor. When I arrived mum was being given painkillers by injection, but within fairly short time she was given a syringe driver.

I found those last days harrowing. The physical changes can be traumatic to see, especially if you are not expecting them. Mums limbs grew cold, her breathing changed so that there were gaps between breaths, her skin became mottled, her eyes became opaque and as she had stopped eating and drinking she had lost a huge amount of weight. I did not know how she was still alive.

I understand entirely the feeling that you hope your nan will die soon. I both hoped mum would die and feared that she would. The anguish was dreadful.
Stay strong. There will be an end
(((((((((((((((((hugs)))))))))))))))))))

To be honest, this is exactly how my Nan has been for a few days now. She looks more skeletal now as she has lost weight, no blinking or swallowing. All her limbs are cold bar her legs and her skin has gone slightly more mottled every day. It’s the vacant eyes though, always open but not looking at anything, not blinking and almost opaque.

She is not receiving any medication at all, they have just been making sure she is comfy but the staff have been absolutely amazing so I cannot fault them at all.

We will see how the rest of the day goes now though….

Thank you so much though for your response!

 

[bluemoon25]

An update - my Nan is finally at peace. She passed early this evening.

It is a huge relief to know she is no longer suffering (she got worse with her breathing initially) but then her breathes got very shallow and she passed quickly within a few minutes of my grandfather coming back in from his break. The staff were amazing and kind and we are ever so grateful.

I’m a mess atm though. Feeling incredibly guilty I was not there when she passed but also relieved she has been released from this all.

Thank you everyone for your advice and kindness though, it means the world. And to everyone going through this, I send my heart out to you all and my best wishes. Stay strong xxx

 

[Missodell18]

I'm so sorry for your loss @bluemoon25 . I'm glad your Nan is no longer suffering though. Try not to feel guilty for not being there (easier said than done) but a life and your relationship with your Nan is not defined or down to the last few hours or days. Wishing you strength and peace xx

 

[SAP]

I’m sorry to hear about your Nan, you have all been through the mill. Try not to give yourself a hard time, be as gentle as you can with yourself . It’s obvious from what you have written that you are a close family and over the years that will have given her so much joy, try to concentrate on that.

 

[SkyeD]

Sorry to hear your sad news @bluemoon25
Your nan is at peace and now you need time to work on your own peace. Wishing you strength and courage over the next few days, weeks and beyond.
S x