At the end of our journey

Susyg

Registered User
Feb 22, 2015
14
0
We had a phone call from CH last Thursday to say MIL had had a fall and they thought a stroke. Paramedics arrived and took her to hospital and MIL could not remember falling, did not know where she was and asking if her mum was coming in to see her. None of this was unusual behaviour for MIL. We said we would like her to be taken back to the CH asap as it just adds to her confusion being anywhere different even though she does not know where she is in the care home. The Dr wanted to keep her in as she needed fluids but maybe go home next day. She was ok overnight and Friday we went in and she was more chatty than usual and talking rather than us talking and her answering so we thought it was a good sign. Saturdays visit was worrying as she was sound asleep and we could not wake her (usually a very very light sleeper) and even a firm nudge would not wake her. We were told not too worry as she was probably very tired, so we decided to return for the later time visiting hour. She was more awake and back to her usual self asking where she was and was mum coming etc. Sunday we were told that she had lost her swallow reflex due to the stroke and she could would cough and splutter even with sips of water off a sponge. The Dr spoke with us and said they could try nasal tube feed but it would only be a temporary thing as she was not a suitable candidate for a peg feed. We asked what is the point if nothing more could be done so she was put on "at risk feeding" which meant she could have thickened foods and water but was at risk of choking and also we were told she was at end of life so if she got a chest infection from risk feeding then they would only treat the symptoms and not the infection. We agreed with this as we thought it best for her. She has hated every day of her life (15months) in care and asks every day where her husband is and her Mum and Dad. She told us nearly every day she hated it there and the CH staff told us that she is not a happy person.
MIL had not eaten anything except a yoghurt and very little fluids since her admission to hospital and she was fitted with a syringe driver with morphine and sedatives on Thursday. It has been a rollercoaster journey as some of you have described and I think it is an awful way for anybody to end their life. We are now just sat waiting and watching and she is hanging on and it makes us wonder was she at the end of life? I know she hated life with dementia and we know we did do the right thing for her but it is not easy to help make the decision to end life in such a slow manner. Very soon our journey will be over and for that I will be thankful but I do wish that end of life means just that and quickly administered in one big shot rather than small doses over a long period and prolonging suffering for all. I wish you all the very best with the rest of your journey and hope you have a peaceful ride x
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
sad news, Susyg
I hope the meds keep your mum comfortable
very best wishes to you all
 

Izzy

Volunteer Moderator
Aug 31, 2003
74,004
0
72
Dundee
It really is the hardest of times.

I hope you mum is kept comfortable and finds peace soon. Wishing you strength.
 

Jezzer

Registered User
Jun 12, 2016
984
0
Lincoln, UK
We had a phone call from CH last Thursday to say MIL had had a fall and they thought a stroke. Paramedics arrived and took her to hospital and MIL could not remember falling, did not know where she was and asking if her mum was coming in to see her. None of this was unusual behaviour for MIL. We said we would like her to be taken back to the CH asap as it just adds to her confusion being anywhere different even though she does not know where she is in the care home. The Dr wanted to keep her in as she needed fluids but maybe go home next day. She was ok overnight and Friday we went in and she was more chatty than usual and talking rather than us talking and her answering so we thought it was a good sign. Saturdays visit was worrying as she was sound asleep and we could not wake her (usually a very very light sleeper) and even a firm nudge would not wake her. We were told not too worry as she was probably very tired, so we decided to return for the later time visiting hour. She was more awake and back to her usual self asking where she was and was mum coming etc. Sunday we were told that she had lost her swallow reflex due to the stroke and she could would cough and splutter even with sips of water off a sponge. The Dr spoke with us and said they could try nasal tube feed but it would only be a temporary thing as she was not a suitable candidate for a peg feed. We asked what is the point if nothing more could be done so she was put on "at risk feeding" which meant she could have thickened foods and water but was at risk of choking and also we were told she was at end of life so if she got a chest infection from risk feeding then they would only treat the symptoms and not the infection. We agreed with this as we thought it best for her. She has hated every day of her life (15months) in care and asks every day where her husband is and her Mum and Dad. She told us nearly every day she hated it there and the CH staff told us that she is not a happy person.
MIL had not eaten anything except a yoghurt and very little fluids since her admission to hospital and she was fitted with a syringe driver with morphine and sedatives on Thursday. It has been a rollercoaster journey as some of you have described and I think it is an awful way for anybody to end their life. We are now just sat waiting and watching and she is hanging on and it makes us wonder was she at the end of life? I know she hated life with dementia and we know we did do the right thing for her but it is not easy to help make the decision to end life in such a slow manner. Very soon our journey will be over and for that I will be thankful but I do wish that end of life means just that and quickly administered in one big shot rather than small doses over a long period and prolonging suffering for all. I wish you all the very best with the rest of your journey and hope you have a peaceful ride x
I am so very sorry and I have to agree with your wish that the medication could be administered quickly. Please forgive what might seem an inappropriate comparison, but if a pet cat or dog were suffering, it would be over very quickly and peacefully. Why then, after all they have endured, do we make our loved ones undergo a slow departure? It is wrong and I find it cruel and disrespectful to the sufferer. May this precious lady soon have the peace she so needs. You are all in my thoughts at this difficult time.
 

Susyg

Registered User
Feb 22, 2015
14
0
sad news, Susyg
I hope the meds keep your mum comfortable
very best wishes to you all
Thank you, they seem to be working now. We had to complain yesterday as she was distressed and agitated and clearly not on enough medication.
 

Susyg

Registered User
Feb 22, 2015
14
0
I am so very sorry and I have to agree with your wish that the medication could be administered quickly. Please forgive what might seem an inappropriate comparison, but if a pet cat or dog were suffering, it would be over very quickly and peacefully. Why then, after all they have endured, do we make our loved ones undergo a slow departure? It is wrong and I find it cruel and disrespectful to the sufferer. May this precious lady soon have the peace she so needs. You are all in my thoughts at this difficult time.
Yes it seems so barbaric. I said exactly those words to the nurse yesterday! My MIL was clearly agitated and in pain and not on a very strong dose of morphine and sedative. We complained as we know she could be given a stronger dose and indeed a top up by injection if needed. After talking to several nurses and telling the last nurse that we in fact had a friend that works in a nursing home and is an end of life carer that is registered to give end of life meds we soon got the dosage increased. Don't get me wrong the staff have been great and kind and giving the dosage the Dr prescribed but it makes you wonder why they want to drag things out especially for the patient. I did have a little sigh today though as I left the hospital for a few hours and my daughter was sitting with her Nan and a nurse came in and gave her an end of life leaflet and coping with dying. I returned to the hospital a few hours later and same nurse came round and gave me a food menu to fill in for MIL meals tomorrow! I said do you really think she will be wanting to eat anything? She is totally unaware now and not moving at all and feels very much like a statue. She replied that we don't know what tomorrow will bring and the food will be there if she wakes and wants food! I just filled the menu in to humour her. We left with a heavy heart wondering if tonight will be the end or we face another day.
 

Jezzer

Registered User
Jun 12, 2016
984
0
Lincoln, UK
Yes it seems so barbaric. I said exactly those words to the nurse yesterday! My MIL was clearly agitated and in pain and not on a very strong dose of morphine and sedative. We complained as we know she could be given a stronger dose and indeed a top up by injection if needed. After talking to several nurses and telling the last nurse that we in fact had a friend that works in a nursing home and is an end of life carer that is registered to give end of life meds we soon got the dosage increased. Don't get me wrong the staff have been great and kind and giving the dosage the Dr prescribed but it makes you wonder why they want to drag things out especially for the patient. I did have a little sigh today though as I left the hospital for a few hours and my daughter was sitting with her Nan and a nurse came in and gave her an end of life leaflet and coping with dying. I returned to the hospital a few hours later and same nurse came round and gave me a food menu to fill in for MIL meals tomorrow! I said do you really think she will be wanting to eat anything? She is totally unaware now and not moving at all and feels very much like a statue. She replied that we don't know what tomorrow will bring and the food will be there if she wakes and wants food! I just filled the menu in to humour her. We left with a heavy heart wondering if tonight will be the end or we face another day.
Oh dear you must feel so tired and frustrated. I think being given the food menu might have flipped me! And the same nurse too! I do think the whole end of life process needs to be looked at carefully because what you describe really is unacceptable. Im so sorry. Take care xxx
 

Susyg

Registered User
Feb 22, 2015
14
0
Oh dear you must feel so tired and frustrated. I think being given the food menu might have flipped me! And the same nurse too! I do think the whole end of life process needs to be looked at carefully because what you describe really is unacceptable. Im so sorry. Take care xxx
Yes I wish we could more about End of life and get laws changed. The sad thing is we are just one family and there are many many more going through the same thing. Thank you for your kind words
 

Hazara8

Registered User
Apr 6, 2015
697
0
We had a phone call from CH last Thursday to say MIL had had a fall and they thought a stroke. Paramedics arrived and took her to hospital and MIL could not remember falling, did not know where she was and asking if her mum was coming in to see her. None of this was unusual behaviour for MIL. We said we would like her to be taken back to the CH asap as it just adds to her confusion being anywhere different even though she does not know where she is in the care home. The Dr wanted to keep her in as she needed fluids but maybe go home next day. She was ok overnight and Friday we went in and she was more chatty than usual and talking rather than us talking and her answering so we thought it was a good sign. Saturdays visit was worrying as she was sound asleep and we could not wake her (usually a very very light sleeper) and even a firm nudge would not wake her. We were told not too worry as she was probably very tired, so we decided to return for the later time visiting hour. She was more awake and back to her usual self asking where she was and was mum coming etc. Sunday we were told that she had lost her swallow reflex due to the stroke and she could would cough and splutter even with sips of water off a sponge. The Dr spoke with us and said they could try nasal tube feed but it would only be a temporary thing as she was not a suitable candidate for a peg feed. We asked what is the point if nothing more could be done so she was put on "at risk feeding" which meant she could have thickened foods and water but was at risk of choking and also we were told she was at end of life so if she got a chest infection from risk feeding then they would only treat the symptoms and not the infection. We agreed with this as we thought it best for her. She has hated every day of her life (15months) in care and asks every day where her husband is and her Mum and Dad. She told us nearly every day she hated it there and the CH staff told us that she is not a happy person.
MIL had not eaten anything except a yoghurt and very little fluids since her admission to hospital and she was fitted with a syringe driver with morphine and sedatives on Thursday. It has been a rollercoaster journey as some of you have described and I think it is an awful way for anybody to end their life. We are now just sat waiting and watching and she is hanging on and it makes us wonder was she at the end of life? I know she hated life with dementia and we know we did do the right thing for her but it is not easy to help make the decision to end life in such a slow manner. Very soon our journey will be over and for that I will be thankful but I do wish that end of life means just that and quickly administered in one big shot rather than small doses over a long period and prolonging suffering for all. I wish you all the very best with the rest of your journey and hope you have a peaceful ride x


The Hospice movement are very good in relation to this period or 'end of life', in as much as the term 'comfort' becomes paramount. Palliative care and all the rest of it should be in place, but as we know, 'end of life' can be so very varied. My late mother spent one whole month in hospital, virtually without any sustenance, other than the water I managed to provide through a normal syringe. What was so important then, was to ensure that everything was in place that could be in place. When procedures (turning, washing) had to be carried out, I was there to alleviate any distress. I remained there the whole time, day and night. One understands, perhaps much later than one should, that the one you have cared for, in my case, my mother, is actually dying. And there is nothing whatsoever that you can do to change that. But you can provide 'comfort', whether by just being there or holding a hand, or simply adjusting a pillow to ensure 'comfort'. And where there is obvious discomfort or distress, then that has to be addressed accordingly and correctly. No one should suffer. And I feel it is so very important that there is a communion between the medical team and the family. That the sensitivity and knowledge of the family members in relation to their loved one, is seen as an integral part here. For they know that person, their life story, their desires or fears. What has probably been a long and intimate journey with dementia at its source, now drawing to an end, requires enormous awareness and compassion, if only because it is at a time deeply significant at every level. And it remains a fundamental truth, that this moment comes to us all. That alone warrants the ultimate attention and application of all that is best in human nature and the magnanimity of mankind.
 
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Duggies-girl

Registered User
Sep 6, 2017
3,620
0
So sad @Susyg that you are having to go through this dreadful time and for your MIL too. I truly wish that it comes to an end soon and that your MIL gets peace. To go in peace and with dignity should be the right of everyone and it is so unfair that this awful drawn out suffering is still inflicted upon a person who is obviously dying anyway.

Sending you strength and hoping that the end is peaceful and soon.
 

monkeygirl15

Registered User
Oct 1, 2017
66
0
Hi Susyg

I'm so sorry you have to go through this sort of ending. I totally agree with all you have written. I went through a horrendous ending with my father. Looking back, I don't think things were explained to us properly and he wasn't given all he could have been to make things more comfortable. I hope things are very very different for you and you all find a very peaceful and timely ending to this.
 

Susyg

Registered User
Feb 22, 2015
14
0
Thank you.
Yesterday was not a nice day for us sat with MIL. I arrived at 9.30 and found her more aware than the day before. She was lifting her right arm as though uncomfortable. This continued with a few noises from her but not painful noises. I went across to ward receptionist and asked if someone could just come and check all was ok. 10 mins later nurse comes in and looks briefly at MIL and says yes all is fine and she is having enough morphine and it is not given to get the person out of it as it is pain relief. She also said people move in their sleep and that is what she is doing. I didn't not agree with this as it seemed to me a little like I could only describe as a contraction of limbs? This went on for a few hours and getting worse with also her right leg joining in so I called a nurse again. This time we were told a palliative nurse would come and see us. She was lovely, she checked MIL over and discovered she did feel pain when she moved her leg and because she is only on a low dose of morphine she would prescribe a bit higher dose. She also checked syringe driver and lo and behold it was leaking so she probably not getting full amount of small dose anyway. We just have to keep telling ourselves that we know MIL and we know when things are not right for her we then have to trust the nursing staff to realise this. I think for some nurses it is another day for them and they get used to it but I think they would be very different if it was one of their loved ones. I can't say MIL been treated badly and it is more a concern for us seeing her like this which is probably just another day to the staff but I just wished the staff could see that we don't see this every day thankfully and it is very worrying for us.
I know a lot of people come on here for advice and don't want to scare anyone reading this that will be going through the same in the future as it is worse for us sat watching and waiting than the patient themselves. Everyone is different and some more peaceful than others but I think we all wish for this to be over ASAP.
 

Jezzer

Registered User
Jun 12, 2016
984
0
Lincoln, UK
I understand what you are saying. I cared for mum's sister who passed a year before mum was diagnosed and I am still traumatised by her last day. I almost begged the PC to "help" her but she said she wasn't in pain (seemed like it to me) and that it was worse for us than her! Hence my very real concern about what awaits mum. She will remain in the CH though and for that, I am relieved. Some nurses are tough nuts and I guess they have to be to cope with the job. Not good about syringe driver though - no excuse for that. I can only say again that I am truly sorry for MIL and for you all. It is indeed a living nightmare. Wishing a swift and speedy release for this poor lady. With Love. J
 

Susyg

Registered User
Feb 22, 2015
14
0
MIL still here! I am sure she can't go on any longer?? Yesterday was a better day for all of us. MIL was put in her own nightclothes for the first time and she was very comfortable. The nurses have been very attentive too so we all felt a bit better being there.
Today my daughters are sitting with their Nan and unfortunately Nan has damaged her voicebox from all the throats breathing so she is making an awful loud noise and it is horrible to listen to. The Dr has given something to help. It is a very stressful time though and we just wish the end would hurry up.
 

Jezzer

Registered User
Jun 12, 2016
984
0
Lincoln, UK
I recall my Aunt making that same sound and it is horrendous to hear. Wishing you all continued strength and hoping that your MIL is soon at peace x
 

monkeygirl15

Registered User
Oct 1, 2017
66
0
I think that sound is quite common. My dad didn't have it but I have known others who are pretty close to the end who have. I think there is a very big difference between palliative care staff and "normal" nursing care staff. Perhaps it's to do with specialisms or that the everyday staff have to do so many other the things. Whatever the reason, no one deserves a needlessly unpleasant ending. Once again, I hope your MIL gets the ending she deserves and that it comes swiftly for all your sakes.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
This is the last long vigil, but it will be over soon.
The loud breathing (that also has gaps in it) is called Cheyne Stokes breathing and is a sign of the very end. Once this starts there is usually less than 24 hours before they pass away.
These last days are harrowing, but worse for the person who is watching. I do hope that your MIL is pain free now and her passing will be peaceful
(((((hugs)))))