My Dad began struggling to breath and vomitting at about lunchtime. The doctor attended and prescribed antibiotics and anti sickness medication. I arrived at 2pm and he was very distressed. He had been bedridden for a couple of months and was unable to communicate verbally. He had previously been prescribed a pessary to calm him down and relieve anxiety. He was very distressed talking and fighting for breath. I asked the Nurse to give him some medication and she said as he was being sick she couldn't. I then asked about the pessary and she said that was not prescribed for his current condition only for the the fits and that she was not experienced enough to give him a pessary. Throughout this time he continued to suffer. I left my husband to talk to the nurse and sat with my Dad holding his hand and talking to him. Eventually my husband persuaded the nurse to give my Dad anti sickness pills and 10mg of valium. His adrenaline was so high by this stage that it did not have much effect. The care home did not have anyone to collect a prescription for Dad so my husband went. It took him about two hours to get as it was Christmas Eve. At about 4.30 pm Dad stopped talking and was running out of breath. His body was shutting down. A paramedic was called to try and drain his lungs. I refused to leave Dad and before the paramedic could do anything Dad died at 5.30 pm. I stayed with Dad and my husband and the nurse were outside the door discussing the Do Not Resuccitate on Dad's file which was in the office. Anyway Dad was not resuccitated but I am left feeling very upset that Dad was made suffer at the end when there were so many medicines that could have eased his pain. I am unable to compare his death with any others is this sort of thing common with Alzheimers? Could doctors not prescribe morphine or something?
My father passed away before Christmas - -this is an upsetting post
- Thread starter phillfm
- Start date
I'm sorry your father had such a distressing end, it must have been terrible for you all.
My mum was on morphine at the end, but she was in hospital rather than a care home. I'm not sure what the regulations are around morphine in such an environment and hope someone may be along soon who can clarify.
Try to take comfort from the fact your dad is at peace now, although the horrible memory will stay with you a long time.
Wishing you strength to get through the dark days xxx
My mum was on morphine at the end, but she was in hospital rather than a care home. I'm not sure what the regulations are around morphine in such an environment and hope someone may be along soon who can clarify.
Try to take comfort from the fact your dad is at peace now, although the horrible memory will stay with you a long time.
Wishing you strength to get through the dark days xxx
Dear Phillfm
My heart goes out to you on reading your post. I suppose this is what people mean when you hear them saying things like, "she had a good death". You feel dad did not have a good death, did he? It sounds to me as though things that could have been done to make him more comfortable were not done and were certainly not done quickly enough. I am not at all surprised that this may well play on your mind and in your thoughts over the days and weeks to come.
I wonder if in some sense you were unlucky because it was Christmas Eve - I speak as someone who had a traumatic delivery of a baby on Christmas Day, and some things that happened would not have happened at any other time of year. I dwelt on it for ages after the birth. Finally, I had a counselling session with someone from the National Childbirth Trust to try to talk through, and somehow come to terms with, the things that happened to me that I felt should not have happened.
I don't want to add to your distress in any way and I am sorry if any of what I say upsets you. I just want you to know that people whose realtives have "good deaths" (if there can even be such a thing) are fortunate in being able to feel that at least everything was done that could have been done. Maybe one day you will feel like talking it through, perhaps with someone from Cruse, who can help you make sense of your feelings.
Thinking of you xx
My heart goes out to you on reading your post. I suppose this is what people mean when you hear them saying things like, "she had a good death". You feel dad did not have a good death, did he? It sounds to me as though things that could have been done to make him more comfortable were not done and were certainly not done quickly enough. I am not at all surprised that this may well play on your mind and in your thoughts over the days and weeks to come.
I wonder if in some sense you were unlucky because it was Christmas Eve - I speak as someone who had a traumatic delivery of a baby on Christmas Day, and some things that happened would not have happened at any other time of year. I dwelt on it for ages after the birth. Finally, I had a counselling session with someone from the National Childbirth Trust to try to talk through, and somehow come to terms with, the things that happened to me that I felt should not have happened.
I don't want to add to your distress in any way and I am sorry if any of what I say upsets you. I just want you to know that people whose realtives have "good deaths" (if there can even be such a thing) are fortunate in being able to feel that at least everything was done that could have been done. Maybe one day you will feel like talking it through, perhaps with someone from Cruse, who can help you make sense of your feelings.
Thinking of you xx
I am so very sorry to hear about your poor dad's passing.
My mum died on New Years Eve in her care home. She had a peaceful passing. She fell asleep on Boxing day evening and never woke up. For 5 days she lay in her bed asleep, the doctor also wrote a pescription for antibiotics which of course she never took as she couldn't be woken up. I had previously agreed to no reccitation so this is why no more was done for her. The only medication she had during that time was her morphine patch that she was on for cancer. I have been told that she wasn't in pain and was just sleeping peacefully until she stopped breathing. I hope they were right.
I can't understand why the doctor wasn't called out for again for your father and then an injection of morphine or something stronger could have been given to calm him. I'm suprised the paramedic's couldn't have given him something also.
I really do think it maybe worth making a complaint about how your dad was treated. I know that's probably the last thing you want to do at the moment, it just seems so wrong he was left to suffer like that. To lose a parent is deverstating as it is but I can only imagine what you are going through.
I do wish you all the best for the future and as Vonny said at least he is at peace now.
Rachel xx
My mum died on New Years Eve in her care home. She had a peaceful passing. She fell asleep on Boxing day evening and never woke up. For 5 days she lay in her bed asleep, the doctor also wrote a pescription for antibiotics which of course she never took as she couldn't be woken up. I had previously agreed to no reccitation so this is why no more was done for her. The only medication she had during that time was her morphine patch that she was on for cancer. I have been told that she wasn't in pain and was just sleeping peacefully until she stopped breathing. I hope they were right.
I can't understand why the doctor wasn't called out for again for your father and then an injection of morphine or something stronger could have been given to calm him. I'm suprised the paramedic's couldn't have given him something also.
I really do think it maybe worth making a complaint about how your dad was treated. I know that's probably the last thing you want to do at the moment, it just seems so wrong he was left to suffer like that. To lose a parent is deverstating as it is but I can only imagine what you are going through.
I do wish you all the best for the future and as Vonny said at least he is at peace now.
Rachel xx
Hi, Im so sorry to hear about your dad, it sounds to have been a traumatic death for you to witness, but so good that you were there with him at the end, to give him comfort, and for him to feel himself loved.
It sounds as though the doctor may not have realised how poorly your dad was when he called, as there are alternative routes for delivering anti emetics, pain killers and anti anxiety meds. If you need to you should go and speak to the nursing staff and the doctor who saw dad; they may be able to say something that will help you deal with the feelings that you have; they may not, but at least you will know that you have asked the questions.
You ask is this a common death for people with dementia? I think with the medicines available today...with careful management...a relatively peaceful death can be achieved for most people.
Take care. I hope in time you find some peace.
Love Helen
It sounds as though the doctor may not have realised how poorly your dad was when he called, as there are alternative routes for delivering anti emetics, pain killers and anti anxiety meds. If you need to you should go and speak to the nursing staff and the doctor who saw dad; they may be able to say something that will help you deal with the feelings that you have; they may not, but at least you will know that you have asked the questions.
You ask is this a common death for people with dementia? I think with the medicines available today...with careful management...a relatively peaceful death can be achieved for most people.
Take care. I hope in time you find some peace.
Love Helen
What a traumatic experience, and how very sad. I don't think this is a "typical " alzheimers death at all, but then I don't know what would be typical.
Nothing I say will change what has happened of course, but I think it was such a good thing that you were there with your dad holding his hand, and I am sure this brought him some comfort, though for you it has done the opposite.
All my sympathy to you, and I wish you peace from these terrible memories.
Pippa x
Nothing I say will change what has happened of course, but I think it was such a good thing that you were there with your dad holding his hand, and I am sure this brought him some comfort, though for you it has done the opposite.
All my sympathy to you, and I wish you peace from these terrible memories.
Pippa x
Thanks for your messages
I am going to speak to the care home and the doctor (although I suspect they will blame each other) and consider making a complaint. I think there is a serious lack of awareness surounding end of life care for dementia suffers. It does help to have an idea of how things have been for other patients. Thank you.
I am going to speak to the care home and the doctor (although I suspect they will blame each other) and consider making a complaint. I think there is a serious lack of awareness surounding end of life care for dementia suffers. It does help to have an idea of how things have been for other patients. Thank you.
I'd suggest you make some notes of your own if you plan to do that eg approx times you asked for support and then your questions can be framed around your timeline. This will help you get the answers you seek I hope.
I wrote a long account of what happened to me and put it in a drawer, I let a couple of close friends read it first and it did help me deal with my feelings.
I decided not to make a complaint as I felt I could not face the process and the thought of people denying what had happened made me feel ill, but if you decide you are strong enough I'm behind you every single step of the way. You know you will get all the support you need here. x
I wrote a long account of what happened to me and put it in a drawer, I let a couple of close friends read it first and it did help me deal with my feelings.
I decided not to make a complaint as I felt I could not face the process and the thought of people denying what had happened made me feel ill, but if you decide you are strong enough I'm behind you every single step of the way. You know you will get all the support you need here. x
Firstly, I am really sorry about your sad loss and I am so sorry about the circumstances surrounding your Dad's death.
I lost my Mum just over 2 years ago. She was in hospital over Christmas and her breathing deteriorated. There were few doctors about. I asked when she had last seen a doctor, which had been about 5 days ago. She was hallucinating wildly; the nurses said she was just confused and I should go home and not worry. I was called in at 6am the next day as they had to call a doctor as they were worried about the change in her breathing. She died at 6am the next day after a big delay in giving her intravenous antibiotics for her chest infection, which developed into pneumonia.
I found it very difficult to relive all the circumstances but I did write it all down, supported by TP, complained to the Chief Exec... standard answer, so complained again, didn't receive a reply, so complained again (there was quite a lot to complain about .....) and got a 3 page apology with pledges for change. I personally felt better for doing that as I felt I had done something for the next person who might have been in my Mum's or my position.
Yes, I do think it matters how we leave this world as well as how we enter it... the obvious situation you have highlighted is poor access to medication on a bank holiday, and perhaps they need to have a guideline written up about what to do in such circumstances.
Unfortunately a difficult death like your Dad's makes the grieving more difficult for you as you are left with a lot of "what if's". You did your best for your Dad at the time and were there for him. There are some wonderful people on this forum, who will support you if you feel, like I did, that you have to talk about it in order to release the recurring thoughts.
Two years on I feel much more myself, but still find it painful to think about poor end-of-life care. Our parents deserve much more.
I lost my Mum just over 2 years ago. She was in hospital over Christmas and her breathing deteriorated. There were few doctors about. I asked when she had last seen a doctor, which had been about 5 days ago. She was hallucinating wildly; the nurses said she was just confused and I should go home and not worry. I was called in at 6am the next day as they had to call a doctor as they were worried about the change in her breathing. She died at 6am the next day after a big delay in giving her intravenous antibiotics for her chest infection, which developed into pneumonia.
I found it very difficult to relive all the circumstances but I did write it all down, supported by TP, complained to the Chief Exec... standard answer, so complained again, didn't receive a reply, so complained again (there was quite a lot to complain about .....) and got a 3 page apology with pledges for change. I personally felt better for doing that as I felt I had done something for the next person who might have been in my Mum's or my position.
Yes, I do think it matters how we leave this world as well as how we enter it... the obvious situation you have highlighted is poor access to medication on a bank holiday, and perhaps they need to have a guideline written up about what to do in such circumstances.
Unfortunately a difficult death like your Dad's makes the grieving more difficult for you as you are left with a lot of "what if's". You did your best for your Dad at the time and were there for him. There are some wonderful people on this forum, who will support you if you feel, like I did, that you have to talk about it in order to release the recurring thoughts.
Two years on I feel much more myself, but still find it painful to think about poor end-of-life care. Our parents deserve much more.
Thanks for your messages
It really does help to talk about this - I can't tell most people how Dad died as I don't want to hurt them and my husband has been great but I think he needs a break from me talking about it. So thanks to all of you. I think I will write a letter - the problem is that the doctor and I had put a 'do not resucitate' on Dad's file about three weeks before his death and I am afraid that this is why they didn't give him medication.
It really does help to talk about this - I can't tell most people how Dad died as I don't want to hurt them and my husband has been great but I think he needs a break from me talking about it. So thanks to all of you. I think I will write a letter - the problem is that the doctor and I had put a 'do not resucitate' on Dad's file about three weeks before his death and I am afraid that this is why they didn't give him medication.
There's a difference between medicating to resuscitate and medicating to ease distress, and I personally think you are quite right to have expected more help for your father to try and make him comfortable.
My mum also had DNR on her notes when she was in hospital but was clearly in appalling pain, so she had a morphine drip for the last 10 days of her life.
I hope you manage to get some answers from the home and the doctor which will help make sense of the trauma.
Take care xxx
My mum also had DNR on her notes when she was in hospital but was clearly in appalling pain, so she had a morphine drip for the last 10 days of her life.
I hope you manage to get some answers from the home and the doctor which will help make sense of the trauma.
Take care xxx
Hiya Phillfm,
A DNAR does not stop medication being given to reduce anxiety and ease breathing...the difficulty may have been that the doctor had not prescribed the drugs in the morning that your dad came to need later in the day. That is not a criticism of the doctor...maybe when he called the need wasn't apparent. But please do not think that you agreeing to the DNAR meant that your dad could not receive medication...that just is not so.
A DNAR does not stop medication being given to reduce anxiety and ease breathing...the difficulty may have been that the doctor had not prescribed the drugs in the morning that your dad came to need later in the day. That is not a criticism of the doctor...maybe when he called the need wasn't apparent. But please do not think that you agreeing to the DNAR meant that your dad could not receive medication...that just is not so.
My sincere condolences. I am not surprised you are struggling to come to terms with your father’s death. Do you think it would help you if you felt you could do something to prevent the possibility of a similar experience happening in again in the home? I may help to put the record of events to the safe guarding team at your local authority as I feel your concerns about what happened would be taken seriously . Amy is right you know a DNR does not mean our loved ones such suffer at the end of life it means they should have palliative care that is care to relieve their symptoms which can include significant sedation if necessary. Once again I am so sorry this happened. Try to remember you and your husband were doing your best and were with him and if he was aware what was happening he will also know you were along side of him. I also suspect the paramedics would at the stage they attended have been unsuccessful if I understand you it was what was desired. What was desired was a peaceful end. Once again I am so sorry.
My mum was on 5mg of Valium everyday of her life for the past 40+ years. To her 10 mg wouldn't be that strong as she was used to it.
If your dad had never had Valium on a regular basis it should have had an affect on him.
It would be best to speak to someone who know's about your dad's medication such as his GP. I think you want answers to put your mimd at rest.
I hope you can find some peace.
My thoughts are with you.
Love Rachel xx
If your dad had never had Valium on a regular basis it should have had an affect on him.
It would be best to speak to someone who know's about your dad's medication such as his GP. I think you want answers to put your mimd at rest.
I hope you can find some peace.
My thoughts are with you.
Love Rachel xx
Hi Phillfm, it appears that the last day or so of your fathers life ,his end of life care, could have been managed better.
You will need to find closure on this so asking questions etc is good,better to do it now then think about it for the rest of your life.
As others have said,dad is at peace now.
I hope you get the answers you are looking for,and if it helps others at this care home then that is good too.
est wishes, Angela.
You will need to find closure on this so asking questions etc is good,better to do it now then think about it for the rest of your life.
As others have said,dad is at peace now.
I hope you get the answers you are looking for,and if it helps others at this care home then that is good too.
est wishes, Angela.
