End stage?

[tweedie53]

Hi, my Mum aged 98 has had dementia for the last three years. It has progressed to the stage where she does not know me at times.
Last Saturday she had a very nasty fall in the care home she is in and ended up with a subarachnoid haemorrhage and pneumonia.
The actively treated the pneumonia with IV antibiotics and she appears to be recovering from that, however, she is even more confused now. She has not eated for a full week and only takes sips of water at the most. She is asking for her Mummy most of the time and does not know anyone who visits etc.
They will not tell me she is nearing the end of her life but have said they will not actively treat her in future, therefore she cannot be readmitted to the hospital unless of course it is for a trauma i.e fracture etc. But should she become ill again with pnuemonia for example they want her palliated in her care home which has been agreed.
I am amazed she is still here after one week of refusing meds and sustinence. Has anyone any idea of how long a person in this condition may linger. The whole thing is heartbreaking.

Thank you in advance.

 

[lambchop]

Hi Tweedie, I'm so sorry you are in this position. I understand the torment and hearbreak you are feeling as I went through a similar situation with my mother who had a stroke and lost her swallow. My mum was without any meds and fluids and food for two weeks but she was unable to swallow. IN your mum's case, it seems she is able to swallow but doesn't want to. I don't know how much you want to know as I don't want to upset you too much. If the hospital have said she is nearing end of life and mum isn't interested in taking in anything, there are options like artificial feeding but it would be traumatic and prolong her suffering.

You need to have a palliative care team taking on your mum's care if it is deemed she will not recover. You would need to request this if it hasn't been arranged already. If mum is deemed to be nearing the end, they need to make her comfortable which might include a syringe driver and round-the-clock access to staff and nurses.

My mum lased for two weeks without anything but everyone is different. If you need more detailed information, let me know. The main things are to make mum as comfortable as possible, for you and family to be with her, to speak to her even if she doesn't always recognise you - just be there as much as you are able. Best of luck at this very difficult time. I do feel for you my mum passed away on 19th October this year so I understand your pain.

 

[monkeygirl15]

Hi Tweedie

it's a slightly different situation, but my dad had a series of strokes and was unable to swallow and wasn't even on an IV. Something I only really questioned afterwards. As lampchop (great name) said, some of the details are hard and it was horrendous to watch. I was told my dad wouldn't last 24 hours but he lasted 10 days - and they were 10 very long days and nights.

Make sure the hospital make your mum comfortable. If needed, kick up a fuss. I would also say, do what I didn't do and take care of yourself. I stayed with my dad 24/7 and looking back, we, the family, should have taken turns. We all ended up so exhausted and it made a difficult time even harder than it needed to be. So make sure you are taking care of you a bit.

I'll be thinking of you...

 

[lambchop]

Just to add to monkeygirl's post regarding the IV - my mum was taken off IV which initially panicked me but I found out afterwards that someone who is truly end of life, does not improve or gain anything from IV or subcutaneous fluids - they can do more harm than good (by causing pneumonia for instance). Providing adequate mouth care is better, rather than external fluids. But your mum is still taking in some fluids herself.

 

[canary]

Hi @tweedie53 and welcome to Talking Point.

As your mum is still able to swallow and is still taking in fluids it sounds like she is at the last stages of dementia, although this is not necessarily the same as final stages. People can last a long time as long as they are taking in fluid - it is only once they stop taking fluids too that they are at the final stage. My mum stopped eating and her care home and I thought she had reached the final stage, but then she started eating and drinking again and bounced back. She lived for another year after that.
It is good that she will not be admitted in future, except for fractures, and will just be kept comfortable in her care home. This is what eventually happened to mum; she fell and broke her hip so she went to hospital and surgery, but after this the dementia quickly progressed so that she lost her swallow and passed away 4 weeks after the surgery. She was looked after in her care home till the end.

 

[tweedie53]

Hi Tweedie, I'm so sorry you are in this position. I understand the torment and hearbreak you are feeling as I went through a similar situation with my mother who had a stroke and lost her swallow. My mum was without any meds and fluids and food for two weeks but she was unable to swallow. IN your mum's case, it seems she is able to swallow but doesn't want to. I don't know how much you want to know as I don't want to upset you too much. If the hospital have said she is nearing end of life and mum isn't interested in taking in anything, there are options like artificial feeding but it would be traumatic and prolong her suffering.

You need to have a palliative care team taking on your mum's care if it is deemed she will not recover. You would need to request this if it hasn't been arranged already. If mum is deemed to be nearing the end, they need to make her comfortable which might include a syringe driver and round-the-clock access to staff and nurses.

My mum lased for two weeks without anything but everyone is different. If you need more detailed information, let me know. The main things are to make mum as comfortable as possible, for you and family to be with her, to speak to her even if she doesn't always recognise you - just be there as much as you are able. Best of luck at this very difficult time. I do feel for you my mum passed away on 19th October this year so I understand your pain.

Thank you so much for you lovely answer. It has been arranged that should she go back to her home then the DN's will be overseeing her care.
I have been with her all day today and she took a sip of water but pulled a face and clearly did not want anymore.
As she does not complain of pain they haven't talked about a syringe driver but I know if she becomes distressed they can give her Haliperidol or Midazolam to help.
The Consultant said today that he felt it was days rather than weeks. I just pray she passes soon.
So sorry for your loss. My thoughts and gratitude are with you.

 

[tweedie53]

Hi Tweedie

it's a slightly different situation, but my dad had a series of strokes and was unable to swallow and wasn't even on an IV. Something I only really questioned afterwards. As lampchop (great name) said, some of the details are hard and it was horrendous to watch. I was told my dad wouldn't last 24 hours but he lasted 10 days - and they were 10 very long days and nights.

Make sure the hospital make your mum comfortable. If needed, kick up a fuss. I would also say, do what I didn't do and take care of yourself. I stayed with my dad 24/7 and looking back, we, the family, should have taken turns. We all ended up so exhausted and it made a difficult time even harder than it needed to be. So make sure you are taking care of you a bit.

I'll be thinking of you...

Thank you so much for your reply. So kind of you to answer. I am happy with the care she is getting. Unfortuantely it's just me looking after her as my sister lives too far away. I stayed today for 5 hours but I am aware I need time out and it will only take me 10 minutes to get to the hospital.
So sorry for the loss of your Dad.

 

[tweedie53]

Just to add to monkeygirl's post regarding the IV - my mum was taken off IV which initially panicked me but I found out afterwards that someone who is truly end of life, does not improve or gain anything from IV or subcutaneous fluids - they can do more harm than good (by causing pneumonia for instance). Providing adequate mouth care is better, rather than external fluids. But your mum is still taking in some fluids herself.

Thank you for answering, I really appreciate it. Mum isnt being forced any fluids as it is now recognised she is end of life.
I am just praying for a peaceful timely passing.
My sympathy for the loss of your Mum.

 

[love.dad.but..]

It sounds as though your mum is being kept comfortable which is all you can do now during this difficult time for you both. I chatted to dad right up until the end as I had heard that even when they appear unresponsive hearing is the last sense to go. I wish a peaceful time for your mum and will be thinking of you both x

 

[canary]

The Consultant said today that he felt it was days rather than weeks.

Im so sorry to hear that
(((hugs))))

 

[lambchop]

Thank you for answering, I really appreciate it. Mum isnt being forced any fluids as it is now recognised she is end of life.
I am just praying for a peaceful timely passing.
My sympathy for the loss of your Mum.

Many thanks for your kind words tweedie. We are all thinking of you at this horrible, horrible time. It is the best outcome of all if mum is comfortable and not showing distress. You would know if she was distressed. My mum was peaceful and didn't need a syringe driver either. I am so grateful for this.

You are with her and comforting her - that is the best present you could give your dear mum. You don't need to do anymore. Keep talking to her and don't worry about leaving her for a few minutes or longer, if you need to do anything. She knows you love her dearly. You have all our support. May your mum continue to be peaceful right until the end.

 

[Murper1]

You are doing brilliantly. In my case with my Mum during her final visit to hospital, I wish I had insisted on painkillers earlier. I had kept asking the nurses to give her painkillers, then it occurred to me that Mum, who had long lost the ability to talk, might be able to point to a red or green piece of paper to tell me if she was in pain. I made sure the senior nurse witnessed her pointing to the red paper for 'in pain' and he was so moved that he immediately rigged up a low dose of morphine for her. My lovely Mum slipped away gently the following morning.

 

[tweedie53]

Im so sorry to hear that
(((hugs))))

Bless you, thank you.

 

[tweedie53]

Many thanks for your kind words tweedie. We are all thinking of you at this horrible, horrible time. It is the best outcome of all if mum is comfortable and not showing distress. You would know if she was distressed. My mum was peaceful and didn't need a syringe driver either. I am so grateful for this.

You are with her and comforting her - that is the best present you could give your dear mum. You don't need to do anymore. Keep talking to her and don't worry about leaving her for a few minutes or longer, if you need to do anything. She knows you love her dearly. You have all our support. May your mum continue to be peaceful right until the end.

Your words brought me such comfort. Thank you so much. She is virtually unconscious now. They have given her morphine and midazolam as she became distressed thinking she had something in her mouth and was trying to spit it out. I feel she is close and have told her it is alright to leave and be at peace. I love her so much but it is her time now. Thank you again and bless you.

 

[tweedie53]

You are doing brilliantly. In my case with my Mum during her final visit to hospital, I wish I had insisted on painkillers earlier. I had kept asking the nurses to give her painkillers, then it occurred to me that Mum, who had long lost the ability to talk, might be able to point to a red or green piece of paper to tell me if she was in pain. I made sure the senior nurse witnessed her pointing to the red paper for 'in pain' and he was so moved that he immediately rigged up a low dose of morphine for her. My lovely Mum slipped away gently the following morning.

Thank you. Mum is on morphine and midazolam now as she became distressed today. She is sleeping virtually all the time now and is not easy to rouse. Just hoping for a swift and peaceful passing now. I'm glad your Mums passing was gentle. Thank you again.

 

[LadyA]

Thinking of you, @tweedie53 . This is the worst time, this watching and waiting. Wishing you strength.

 

[lambchop]

Your words brought me such comfort. Thank you so much. She is virtually unconscious now. They have given her morphine and midazolam as she became distressed thinking she had something in her mouth and was trying to spit it out. I feel she is close and have told her it is alright to leave and be at peace. I love her so much but it is her time now. Thank you again and bless you.

You are doing everything right - how amazingly you are coping at this traumatic time. I know it is distressing - we all feel your pain. I hope mum's distress is being adequately managed by the drugs you mentioned and I hope you have managed to rest. How well you did to tell her it's alright to let go. I was unable to do this with my mum. All the world's strength to you.

 

[canary]

This is such a difficult time - it is the last vigil and hard to watch. The world seems to get put on hold.

You did right in telling her that it was OK to go. The hearing is the last thing to go, so talk to her, read to her, play her favourite music. Even though she seems unconscious she will still be able to hear.
When people get very dehydrated their skin and lips become dry, so use some nice scented moisturiser on her face arms etc and put some lip salve or vaseline on her lips. I was also given a little brush to put some water on her tongue and clean her mouth.

 

[tweedie53]

You are doing everything right - how amazingly you are coping at this traumatic time. I know it is distressing - we all feel your pain. I hope mum's distress is being adequately managed by the drugs you mentioned and I hope you have managed to rest. How well you did to tell her it's alright to let go. I was unable to do this with my mum. All the world's strength to you.

I wasn't so strong today. The hospital felt she didn't need her drugs so it left her spitting, coughing and gagging because she thought she had something in her mouth. I all but begged them to help her buy they said she was ok and they thought overall she was peaceful. She was far from it. I had to walk away and leave her. She did not know me and told me to leave her alone as I was trying to wipe her mouth and face. I sat in the car and broke down and decided not to go back today. I feel better for it. Tomorrow she goes back into her care home and the District Nurses are going to assess her for a syringe driver. Thank you so much, you have helped by caring. Bless you. xx

 

[tweedie53]

This is such a difficult time - it is the last vigil and hard to watch. The world seems to get put on hold.

You did right in telling her that it was OK to go. The hearing is the last thing to go, so talk to her, read to her, play her favourite music. Even though she seems unconscious she will still be able to hear.
When people get very dehydrated their skin and lips become dry, so use some nice scented moisturiser on her face arms etc and put some lip salve or vaseline on her lips. I was also given a little brush to put some water on her tongue and clean her mouth.

I tried to day to moisten her mouth, I had bought some glycerin sticks and tried to apply vaseline to her lips but she appears to be ultra sensitive to touch and resists all attempts. She was very distressed today. It has not been easy. Thank you so much for your kind words. Very grateful.