End of life?

[Sherikay]

my mum was admitted to hospital after a seizure possibly related to a UTI not being treated for ling enough with antibiotics. The hospital are happy she did not have brain infection or stoke yet she is still semi-concious and now not eating we are unable to feed her.

We have had a job speaking to different dr’s but the consultant is charge is awful, dismissive, sarcastic just awful to deal with. The neurologist was the only one we spoke to and able to communicate the most with information we understood. And he said on Friday that she will make a full recovery, after a lumbar puncture to investigate any infections. He thought the seizures (being treated with sodium valporate) she was having were due to the UTI and now it has been confirmed that no other infections were present. However they will not let us talk to him again.

The consultant in charge says she will not recover as she is not eating or communication. He says a feeding tube has very high risks and the best they can do is to look at care after being discharged. He says the sodium valporate which does say has drowsiness, is not enough to cause her current state of sleeping a lot and when she is awake for very short periods, staring ahead of her and only very slightly acknowledging me when I talk to her or play music. He says there is now a new baseline for her.

Has anyone had any similar experiences where their loved one has still pulled through. Or if not feeding a person until they die causes pain without us necessarily seeing it. the consultant says he won’t answer questions such as this or even how long she may live for.

My heart is breaking with the situation as I was abroad for a break when her UTI got worse while my brother was looking after her. I feel i could have got a GP involved more quickly as I would have seen her UTI was not getting better. In fact it turns out her symptoms were worse but my brother didn’t report anything was worse than when I left. I want one last chance to have her back as she was before this 2 weeks ago

 

[canary]

Has the consultant talked about "keeping her comfortable"?
Unfortunately, any infection can progress dementia and it looks like this is what has happened.
When someone dies from dementia the body slowly shuts down and this can take days, or even weeks. As the body shuts down it can no longer process food or fluid, so they stop eating and drinking. They are not starving to death.

Sometimes they do bounce back, becoming more alert and eating and drinking again, but there is no way of knowing whether this will happen to your mum. Even though she is semi-conscious, she will still be able to hear you so now is the time to say the important things - I love you, thank you, forgive me and (if appropriate) I forgive you. Talk to her, read to her, play her favourite music. The aim will be to keep her pain free and the doctors will arrange for pain killers to be given, as an injection, via a patch, or a syringe driver, as necessary.

We can hold your virtual hand through this time. Ask anything
xxxx

 

[Sherikay]

Has the consultant talked about "keeping her comfortable"?
Unfortunately, any infection can progress dementia and it looks like this is what has happened.
When someone dies from dementia the body slowly shuts down and this can take days, or even weeks. As the body shuts down it can no longer process food or fluid, so they stop eating and drinking. They are not starving to death.

Sometimes they do bounce back, becoming more alert and eating and drinking again, but there is no way of knowing whether this will happen to your mum. Even though she is semi-conscious, she will still be able to hear you so now is the time to say the important things - I love you, thank you, forgive me and (if appropriate) I forgive you. Talk to her, read to her, play her favourite music. The aim will be to keep her pain free and the doctors will arrange for pain killers to be given, as an injection, via a patch, or a syringe driver, as necessary.

We can hold your virtual hand through this time. Ask anything
xxxx

No the Dr. Hasn’t talked about keeping her comfortable. He has the worst bedside manner. She does seem to be sleeping as indicated by her breathing and slight snores. Can she still hear me if her eyes are closed. I am playing her favourite music and talking to her to try and get her to wake up and eat something. I am at her bedside in hospital but I would like her discharged to our home but as she is still on anti-seizure medicine and a IV potassium drip Im not sure this will be possible.

Its reassuring that if she is unable to eat that it will not be painful. She does feel pain or disturbance anyway when the nurses touch or move her.

Thank you for your reply and good wishes. It is so good to talk even online to people who have or are going through this.

 

[Pacucho]

Hello
Sorry to read about the issues you are having to deal with. It is disappointing that the consultant has such a bad attitude. What I would encourage you to do is to seek a meeting with him/her to try and improve your relationship, and what may help is by referring to the Dementia Friendly Hospital Charter Poster (and take a copy with you) which sets out what to expect during a stay in an acute hospital in England. Here is a link: https://nationaldementiaaction.org....a-friendly-hospital-charter-poster-resources/.
Hope this helps,
Paco

 

[Buttercup24]

Has the consultant talked about "keeping her comfortable"?
Unfortunately, any infection can progress dementia and it looks like this is what has happened.
When someone dies from dementia the body slowly shuts down and this can take days, or even weeks. As the body shuts down it can no longer process food or fluid, so they stop eating and drinking. They are not starving to death.

Sometimes they do bounce back, becoming more alert and eating and drinking again, but there is no way of knowing whether this will happen to your mum. Even though she is semi-conscious, she will still be able to hear you so now is the time to say the important things - I love you, thank you, forgive me and (if appropriate) I forgive you. Talk to her, read to her, play her favourite music. The aim will be to keep her pain free and the doctors will arrange for pain killers to be given, as an injection, via a patch, or a syringe driver, as necessary.

We can hold your virtual hand through this time. Ask anything
xxxx

 

[Buttercup24]

my mum was admitted to hospital after a seizure possibly related to a UTI not being treated for ling enough with antibiotics. The hospital are happy she did not have brain infection or stoke yet she is still semi-concious and now not eating we are unable to feed her.

We have had a job speaking to different dr’s but the consultant is charge is awful, dismissive, sarcastic just awful to deal with. The neurologist was the only one we spoke to and able to communicate the most with information we understood. And he said on Friday that she will make a full recovery, after a lumbar puncture to investigate any infections. He thought the seizures (being treated with sodium valporate) she was having were due to the UTI and now it has been confirmed that no other infections were present. However they will not let us talk to him again.

The consultant in charge says she will not recover as she is not eating or communication. He says a feeding tube has very high risks and the best they can do is to look at care after being discharged. He says the sodium valporate which does say has drowsiness, is not enough to cause her current state of sleeping a lot and when she is awake for very short periods, staring ahead of her and only very slightly acknowledging me when I talk to her or play music. He says there is now a new baseline for her.

Has anyone had any similar experiences where their loved one has still pulled through. Or if not feeding a person until they die causes pain without us necessarily seeing it. the consultant says he won’t answer questions such as this or even how long she may live for.

My heart is breaking with the situation as I was abroad for a break when her UTI got worse while my brother was looking after her. I feel i could have got a GP involved more quickly as I would have seen her UTI was not getting better. In fact it turns out her symptoms were worse but my brother didn’t report anything was worse than when I left. I want one last chance to have her back as she was before this 2 weeks ago

 

[Buttercup24]

Hello my heart goes out to you, my mum is at home and her body is closing down, very little fluids and very small amount of food. I relate to you and it is so emotional.
Just hold her hand talk to her, play some music she likes, and I am sure she knows how wonderful you have been,..