Dementia, Sleep Disturbance and Care Homes
Discussion
My Dad has vascular dementia and Alzheimer's and was admitted to care home at the start of May 2023.
Prior to admission he had been suffering from insomnia, a common symptom of dementia, constantly waking my mum at all hours. That sleep deprivation alone was slowly killing her, she looks ten years younger since he has gone into care.
However, now he is in care his GP there has prescribed him a sleeping tablet (Zopiclone, I think), but the care home staff are being somewhat vague on his exact medications - I've written to them this morning and asked for a full list of his meds.
The problem is now that he is having (three times in the last two weeks) falls that lead to him being hospitalised. I'm really sensitive to this because his sister, also with dementia, had a fall that led to a bleed on the brain which killed her.
If I look on the Alzheimer's UK website (a great resource) it says "Sleep medication is not recommended for a person with dementia. However, some doctors may suggest trying it for a short period if the sleep problem is severe, and non-drug treatments have not worked. If the person does take sleep medication, they may become more confused and more likely to fall over the next day. Take extra care with them.
https://www.alzheimers.org.uk/about-dementia/sympt...
My Dad is now totally zonked out when we go to visit him, when he wasn't previously. My view is that he's doped up to the eyeballs on this sleeping pill and it is possibly not in his best interest - although it of course ensures that he sleeps in the night to give the care home staff an easier ride.
So, what rights do I have (I have LPOA for Finance and Health) to tell his GP to stop prescibing this sleeping tablet, if we think it is contributing to his falls?
I've got a huge amount of sympathy for care home night staff, they are probably understaffed and see this as a means of manging the problem but I don't think it is in my dad's best long-term interests and wonder if anyone else has faced such a challenge?
Prior to admission he had been suffering from insomnia, a common symptom of dementia, constantly waking my mum at all hours. That sleep deprivation alone was slowly killing her, she looks ten years younger since he has gone into care.
However, now he is in care his GP there has prescribed him a sleeping tablet (Zopiclone, I think), but the care home staff are being somewhat vague on his exact medications - I've written to them this morning and asked for a full list of his meds.
The problem is now that he is having (three times in the last two weeks) falls that lead to him being hospitalised. I'm really sensitive to this because his sister, also with dementia, had a fall that led to a bleed on the brain which killed her.
If I look on the Alzheimer's UK website (a great resource) it says "Sleep medication is not recommended for a person with dementia. However, some doctors may suggest trying it for a short period if the sleep problem is severe, and non-drug treatments have not worked. If the person does take sleep medication, they may become more confused and more likely to fall over the next day. Take extra care with them.
https://www.alzheimers.org.uk/about-dementia/sympt...
My Dad is now totally zonked out when we go to visit him, when he wasn't previously. My view is that he's doped up to the eyeballs on this sleeping pill and it is possibly not in his best interest - although it of course ensures that he sleeps in the night to give the care home staff an easier ride.
So, what rights do I have (I have LPOA for Finance and Health) to tell his GP to stop prescibing this sleeping tablet, if we think it is contributing to his falls?
I've got a huge amount of sympathy for care home night staff, they are probably understaffed and see this as a means of manging the problem but I don't think it is in my dad's best long-term interests and wonder if anyone else has faced such a challenge?
Zopiclone is not contraindicated in dementia patients but caution in its use is recommended in all elderly patients due to its muscle relaxent properties and their being a falls risk.
Worth speaking to the GP about what would be best as you describe the insomnia being quite severe so a sleeping tablet may be the better option and the GP will have looked at it from a risk v benefit perspective and will likely see large numbers of patients in similar circumstances. They may decrease the dose if that's an option. If you have LPOA for health then I am sure you could get the medication list from the GP
Hopefully you get it resolved to everyone's satisfaction
Worth speaking to the GP about what would be best as you describe the insomnia being quite severe so a sleeping tablet may be the better option and the GP will have looked at it from a risk v benefit perspective and will likely see large numbers of patients in similar circumstances. They may decrease the dose if that's an option. If you have LPOA for health then I am sure you could get the medication list from the GP
Hopefully you get it resolved to everyone's satisfaction
PurpleTurtle said:
My Dad has vascular dementia and Alzheimer's and was admitted to care home at the start of May 2023.
Prior to admission he had been suffering from insomnia, a common symptom of dementia, constantly waking my mum at all hours. That sleep deprivation alone was slowly killing her, she looks ten years younger since he has gone into care.
However, now he is in care his GP there has prescribed him a sleeping tablet (Zopiclone, I think), but the care home staff are being somewhat vague on his exact medications - I've written to them this morning and asked for a full list of his meds.
The problem is now that he is having (three times in the last two weeks) falls that lead to him being hospitalised. I'm really sensitive to this because his sister, also with dementia, had a fall that led to a bleed on the brain which killed her.
If I look on the Alzheimer's UK website (a great resource) it says "Sleep medication is not recommended for a person with dementia. However, some doctors may suggest trying it for a short period if the sleep problem is severe, and non-drug treatments have not worked. If the person does take sleep medication, they may become more confused and more likely to fall over the next day. Take extra care with them.
https://www.alzheimers.org.uk/about-dementia/sympt...
My Dad is now totally zonked out when we go to visit him, when he wasn't previously. My view is that he's doped up to the eyeballs on this sleeping pill and it is possibly not in his best interest - although it of course ensures that he sleeps in the night to give the care home staff an easier ride.
So, what rights do I have (I have LPOA for Finance and Health) to tell his GP to stop prescibing this sleeping tablet, if we think it is contributing to his falls?
I've got a huge amount of sympathy for care home night staff, they are probably understaffed and see this as a means of manging the problem but I don't think it is in my dad's best long-term interests and wonder if anyone else has faced such a challenge?
I've been in a similar situation to this, ask to speak to the GP on your Dad's behalf and tell them your concerns about the sleeping drugs causing him to fall, the GP will most likely discontinue the prescription without resistance once you've said you think it's causing the falls, he/she won't want any repercussions.Prior to admission he had been suffering from insomnia, a common symptom of dementia, constantly waking my mum at all hours. That sleep deprivation alone was slowly killing her, she looks ten years younger since he has gone into care.
However, now he is in care his GP there has prescribed him a sleeping tablet (Zopiclone, I think), but the care home staff are being somewhat vague on his exact medications - I've written to them this morning and asked for a full list of his meds.
The problem is now that he is having (three times in the last two weeks) falls that lead to him being hospitalised. I'm really sensitive to this because his sister, also with dementia, had a fall that led to a bleed on the brain which killed her.
If I look on the Alzheimer's UK website (a great resource) it says "Sleep medication is not recommended for a person with dementia. However, some doctors may suggest trying it for a short period if the sleep problem is severe, and non-drug treatments have not worked. If the person does take sleep medication, they may become more confused and more likely to fall over the next day. Take extra care with them.
https://www.alzheimers.org.uk/about-dementia/sympt...
My Dad is now totally zonked out when we go to visit him, when he wasn't previously. My view is that he's doped up to the eyeballs on this sleeping pill and it is possibly not in his best interest - although it of course ensures that he sleeps in the night to give the care home staff an easier ride.
So, what rights do I have (I have LPOA for Finance and Health) to tell his GP to stop prescibing this sleeping tablet, if we think it is contributing to his falls?
I've got a huge amount of sympathy for care home night staff, they are probably understaffed and see this as a means of manging the problem but I don't think it is in my dad's best long-term interests and wonder if anyone else has faced such a challenge?
GPs are professional health advisors who can recommend and prescribe medication but the patient has the final say on what the do or don't take, in your Dad's case someone is making decisions on his behalf because he's not in a position to do so himself but you have every right to to ask be involved, as you will know him better the the GP or staff and are in a better position to say what you think his opinion would be about such prescriptions.
If your Dad's been diagnosed with dementia, he should be being looked after on that basis with attendance at night if needed but unfortunately many GPs seem happy to prescribe to make things easy for the staff, Zopiclone should only be prescribed short term anyway.
It's also worth bearing in mind that the needs of dementia patients can change, sometimes quite quickly. This was certainly the case with my dad. He went into a Residential Care Home for respite care initially; however, it quickly became clear that he needed to stay on a permanent basis. After a couple of falls and a deterioration in his condition, he was admitted to hospital and the Care Home said that they couldn't cope with his needs. He had to remain in hospital for a good few weeks before a Nursing Home place could be found for him in a home specialising in dementia care. This was a huge improvement in terms of care levels, but his condition was unfortunately deteriorating all the time he was there (a year).
All the best, OP.
All the best, OP.
Edited by moorx on Saturday 9th September 14:32
Thanks for all the replies everyone.
I've had a good chat with the care home, his dose of Zopiclone is 3.75mg every other day. A bit of Googling suggests that a standard dose is 3.75mg/day with no adverse effects for dementia patients, so I'm comfortable that they are not dosing him up too much just to get him to sleep. that said he does get very agitated at night (sundowning, as it is known) so it is no surprise that he needs some sort of sleep medication.
It seems that all his falls are due to repeated Urinary Tract infections, which are apparently common in dementia patients, especially men.
It's a hydration issue, they forget to drink, this leads to a UTI, that makes them drowsy and therefore susceptible to falls. The care home staff try as much as they can to keep him drinking throughout the day but other than repeatedly forcing him there isn't much they can do. I've bought him a water bottle with straw to drink from but he's sadly totally disinterested.
Each time he has a fall he gets admitted to hospital, they hydrate him, return him back to care the next day. It seems it's all part of the gradual slow decline.
He's OK for now, and I have to say his care home staff are brilliant, I don't know how they have the patience to do what they do.
I've had a good chat with the care home, his dose of Zopiclone is 3.75mg every other day. A bit of Googling suggests that a standard dose is 3.75mg/day with no adverse effects for dementia patients, so I'm comfortable that they are not dosing him up too much just to get him to sleep. that said he does get very agitated at night (sundowning, as it is known) so it is no surprise that he needs some sort of sleep medication.
It seems that all his falls are due to repeated Urinary Tract infections, which are apparently common in dementia patients, especially men.
It's a hydration issue, they forget to drink, this leads to a UTI, that makes them drowsy and therefore susceptible to falls. The care home staff try as much as they can to keep him drinking throughout the day but other than repeatedly forcing him there isn't much they can do. I've bought him a water bottle with straw to drink from but he's sadly totally disinterested.
Each time he has a fall he gets admitted to hospital, they hydrate him, return him back to care the next day. It seems it's all part of the gradual slow decline.
He's OK for now, and I have to say his care home staff are brilliant, I don't know how they have the patience to do what they do.
My sympathies. Very similar to my dad. Towards the end, in the care home, he stopped eating and drinking. He was also drugged up because he was getting violent (just grabbing, scratching, shouting etc). It didn't help that the care home staff never put his hearing aids in so he couldn't hear anything.
It was absolutely the case with my dad that the care home was under staffed so they kept people in their beds where they could. The one time I was there, he was trying to get out of bed and someone came in and told him not to get out as it took 3 of them to do it safely and there was only 1 person available. Not that he understood this because he didn't have his hearing aids in!
It was absolutely the case with my dad that the care home was under staffed so they kept people in their beds where they could. The one time I was there, he was trying to get out of bed and someone came in and told him not to get out as it took 3 of them to do it safely and there was only 1 person available. Not that he understood this because he didn't have his hearing aids in!
PurpleTurtle
Sorry to hear this. I'm glad you've managed to reveal the cause of the falls.
From a health care professional's pov:
Falls are normally multifactorial with common causes of polypharmacy, UTIs (as you've discovered), dementia and reduced muscle tone (often from hospital admissions and muscle wastage from bed rest) being common factors.
You mention you have LPA for health and wellbeing - this is great and enables you to start planning now and to think about what is best for your father. Best doesn't always mean 'extend life at all costs' but rather what do you think he would want. Sometimes it's helpful to consider your father 30 years ago when he was, presumably, fit and well. If he was making the decision regarding his future self with advancing dementia, would he want to prolong this as long as possible or would he rather prioritise comfort and dignity over all else? Is there any need to diagnose any new medical issues? What will this achieve? Would you want this stage of your life prolonged?
If you haven't already, a RESPECT form (https://www.resus.org.uk/respect) can be drawn up, with a GP's input, to highlight exactly what his care should look like. This can be incredibly useful for carers, nursing staff, ambulance crews and hospital staff as and when they become involved. For example, the change in environment of a trip to hospital can lead to increased confusion and delirium with the muscle wastage already mentioned - you may well decide that going to hospital to be 'checked over' after a fall is really not in his best interest and that, save for long bone fractures, you would not want him to be taken in, in this scenario. You can also provide more holistic guidance on his/your wishes.
All the best with it.
Sorry to hear this. I'm glad you've managed to reveal the cause of the falls.
From a health care professional's pov:
Falls are normally multifactorial with common causes of polypharmacy, UTIs (as you've discovered), dementia and reduced muscle tone (often from hospital admissions and muscle wastage from bed rest) being common factors.
You mention you have LPA for health and wellbeing - this is great and enables you to start planning now and to think about what is best for your father. Best doesn't always mean 'extend life at all costs' but rather what do you think he would want. Sometimes it's helpful to consider your father 30 years ago when he was, presumably, fit and well. If he was making the decision regarding his future self with advancing dementia, would he want to prolong this as long as possible or would he rather prioritise comfort and dignity over all else? Is there any need to diagnose any new medical issues? What will this achieve? Would you want this stage of your life prolonged?
If you haven't already, a RESPECT form (https://www.resus.org.uk/respect) can be drawn up, with a GP's input, to highlight exactly what his care should look like. This can be incredibly useful for carers, nursing staff, ambulance crews and hospital staff as and when they become involved. For example, the change in environment of a trip to hospital can lead to increased confusion and delirium with the muscle wastage already mentioned - you may well decide that going to hospital to be 'checked over' after a fall is really not in his best interest and that, save for long bone fractures, you would not want him to be taken in, in this scenario. You can also provide more holistic guidance on his/your wishes.
All the best with it.
The care home will have an assigned GP/ACP ask for chat with them when they visit and discuss it face to face with them rather than the carers. They should have access to the care home and dementia specialist team. The goal should be to get off the the zopiclone long term IMO. Unsettled night time behaviour is very difficult to manage with dementia so you have my sympathies.
We were often told with our dementia patients to not put them back to bed for an afternoon nap as was disorientating for them. Not too darken the rooms in the daytime.
Can get fluid in, in other ways. Ice lollies, jelly, watery soup, milk shakes etc. As the other poster suggests he may not require ED assessment after a fall, the gp can examine him, rapid response team etc. Keep taking him out of his usual environment is disorientating.
Not sure if melatonin is advised for dementia patients. Might be worth researching a bit
Can get fluid in, in other ways. Ice lollies, jelly, watery soup, milk shakes etc. As the other poster suggests he may not require ED assessment after a fall, the gp can examine him, rapid response team etc. Keep taking him out of his usual environment is disorientating.
Not sure if melatonin is advised for dementia patients. Might be worth researching a bit
Can it also happen that a UTI causes pain, which the sufferer cannot descibe and hence gets frustrated and vehement? They also become adept at putting meds in their mouth then taking them out again, so antibiotics for a UTI may not be effective, especially if supervision is less than rigorous. Every sympathy, dementia is not fully understood so there are no "definites"
Alzheimers UK website is a treaure trove, including the Forum
Alzheimers UK website is a treaure trove, including the Forum
It is worth confirming if his GP is still his GP, my Mum ended up in a care home and as a result her GP changed to the one nearest the care home.
Can't say her GP was as good or better than the old one as they couldn't sort out a leg ulcer that eat down to her tendons, gave her sepsis which killed her. While that was going on the care home staff stole her jewellery which was supposedly in the safe.
OP, you need to keep on top of this and not let it go until you know what is going on, best of luck.
Can't say her GP was as good or better than the old one as they couldn't sort out a leg ulcer that eat down to her tendons, gave her sepsis which killed her. While that was going on the care home staff stole her jewellery which was supposedly in the safe.
OP, you need to keep on top of this and not let it go until you know what is going on, best of luck.
Badda said:
PurpleTurtle
Sorry to hear this. I'm glad you've managed to reveal the cause of the falls.
From a health care professional's pov:
Falls are normally multifactorial with common causes of polypharmacy, UTIs (as you've discovered), dementia and reduced muscle tone (often from hospital admissions and muscle wastage from bed rest) being common factors.
You mention you have LPA for health and wellbeing - this is great and enables you to start planning now and to think about what is best for your father. Best doesn't always mean 'extend life at all costs' but rather what do you think he would want. Sometimes it's helpful to consider your father 30 years ago when he was, presumably, fit and well. If he was making the decision regarding his future self with advancing dementia, would he want to prolong this as long as possible or would he rather prioritise comfort and dignity over all else? Is there any need to diagnose any new medical issues? What will this achieve? Would you want this stage of your life prolonged?
If you haven't already, a RESPECT form (https://www.resus.org.uk/respect) can be drawn up, with a GP's input, to highlight exactly what his care should look like. This can be incredibly useful for carers, nursing staff, ambulance crews and hospital staff as and when they become involved. For example, the change in environment of a trip to hospital can lead to increased confusion and delirium with the muscle wastage already mentioned - you may well decide that going to hospital to be 'checked over' after a fall is really not in his best interest and that, save for long bone fractures, you would not want him to be taken in, in this scenario. You can also provide more holistic guidance on his/your wishes.
All the best with it.
Thanks, all really good advice. I'll discuss the RESPECT thing with my Mum, it seems his local authority have adopted it so it is someting will pursue. Sorry to hear this. I'm glad you've managed to reveal the cause of the falls.
From a health care professional's pov:
Falls are normally multifactorial with common causes of polypharmacy, UTIs (as you've discovered), dementia and reduced muscle tone (often from hospital admissions and muscle wastage from bed rest) being common factors.
You mention you have LPA for health and wellbeing - this is great and enables you to start planning now and to think about what is best for your father. Best doesn't always mean 'extend life at all costs' but rather what do you think he would want. Sometimes it's helpful to consider your father 30 years ago when he was, presumably, fit and well. If he was making the decision regarding his future self with advancing dementia, would he want to prolong this as long as possible or would he rather prioritise comfort and dignity over all else? Is there any need to diagnose any new medical issues? What will this achieve? Would you want this stage of your life prolonged?
If you haven't already, a RESPECT form (https://www.resus.org.uk/respect) can be drawn up, with a GP's input, to highlight exactly what his care should look like. This can be incredibly useful for carers, nursing staff, ambulance crews and hospital staff as and when they become involved. For example, the change in environment of a trip to hospital can lead to increased confusion and delirium with the muscle wastage already mentioned - you may well decide that going to hospital to be 'checked over' after a fall is really not in his best interest and that, save for long bone fractures, you would not want him to be taken in, in this scenario. You can also provide more holistic guidance on his/your wishes.
All the best with it.
Ruskie said:
The care home will have an assigned GP/ACP ask for chat with them when they visit and discuss it face to face with them rather than the carers. They should have access to the care home and dementia specialist team. The goal should be to get off the the zopiclone long term IMO. Unsettled night time behaviour is very difficult to manage with dementia so you have my sympathies.
Thank you. Yes, the care home has a dedicated GP, I will arrange to speak to them. Logistically it is a bit difficult as at the moment I can only visit at the weekend when the home runs on a skeleton staff of carers, but I will arrange to work remotely and go in on a weekday. The biggest challenge I have found is wondering what part of my dad's decline is down to his Alzheimer's, and what is due to lack of exercise/muscle wastage. He was previously very active (we took him on a plane to Jersey last August, minimal assistance required) but just over a year on from that he needs a hoist to get him out of an armchair to go to the loo.
FMOB said:
It is worth confirming if his GP is still his GP, my Mum ended up in a care home and as a result her GP changed to the one nearest the care home.
Can't say her GP was as good or better than the old one as they couldn't sort out a leg ulcer that eat down to her tendons, gave her sepsis which killed her. While that was going on the care home staff stole her jewellery which was supposedly in the safe.
OP, you need to keep on top of this and not let it go until you know what is going on, best of luck.
Sorry to hear that, sounds pretty awful. Luckily all of Dad's valuable possessions are still at the family home with my Mum. Can't say her GP was as good or better than the old one as they couldn't sort out a leg ulcer that eat down to her tendons, gave her sepsis which killed her. While that was going on the care home staff stole her jewellery which was supposedly in the safe.
OP, you need to keep on top of this and not let it go until you know what is going on, best of luck.
The staff at my Dad's place are generally great - I looked at some places which were utterly grim, I got a terrible vibe about the care he would receive there - it's just this sleep/sleeping pills issue I wanted to get my head around. It seems that since my original posts they have got on top of the UTI issue, more fluids in him, he's been a lot better, as well as someone at his stage of dementia can be.
Thanks everyone for the replies thus far, some really good advice, it helps to 'talk' as they say, with other people who have been through similar.
Quick thread update.
Dad was taken from his care home to local hospital on in the early hours of Wednesday, suffering from a chest infection and generally pretty poorly.
The A&E dept called my mum as next of kin, told her the end was nigh, he was being admitted to a ward for end of life care, they were stopping all his regular meds etc etc. I raced 100 miles in the car to get there to see him, my brother jumped on a plane from Jersey. We made it there in time to find him poorly but OK - fluid on the lungs being his main problem.
He made it through the night, but I noticed that when they did his 'comfort obs' that he had BP of 120/80, Oxygen saturation of 98% and a pulse of 113bpm. Whilst the latter of these is high, the first two are not (I have a heart condition, so I monitor mine most days), so I put it to the doctor next day that they might be being a little hasty writing him off just yet.
The Consultant was pulled in, he spent five minutes observing him, then said "I agree, he's got every chance of beating this, end of life care decision reversed, get him back on his regular meds + antibiotics to deal with the lung fluids, take his vitals every few hours".
This lunchtime, four days on, I sat up and fed my Dad cottage pie for lunch (he's hungry, still got some appetite, chewing is becoming an issue though) and saw his face light up when his granddaughter/my niece arrived. Plan now is to get him back to his care home, but in a nursing capacity rather than residential, by the end of this week. His consultant says "he's out of the woods, doing good".
We're not sugar coating it - he is very much in the end stages of dementia, I'd be amazed if he makes Christmas, but I'm now his voice, and I don't think he was ready to pass away just yet. I sadly think that A&E took one look at him and went "83, dementia, care home, chest infection, let's not really try to hard with this one". It was only when we questioned them - and only because I have some rudimentary knowledge of these things thanks to my heart attack - that they were willing to reconsider.
I've discussed the RESPECT plan that Badda kindly mentioned above with the palliative care nurses, just awaiting a call back on it.
Ultimately we, his family, have to decide when is the point to stop trying to keep him alive when it all gets too much for him. It's a horrible position to be in, but I have to keep reminding myself that when of sound mind my Dad a very pragmatic bloke and he would have said "don't make me suffer too long".
Dad was taken from his care home to local hospital on in the early hours of Wednesday, suffering from a chest infection and generally pretty poorly.
The A&E dept called my mum as next of kin, told her the end was nigh, he was being admitted to a ward for end of life care, they were stopping all his regular meds etc etc. I raced 100 miles in the car to get there to see him, my brother jumped on a plane from Jersey. We made it there in time to find him poorly but OK - fluid on the lungs being his main problem.
He made it through the night, but I noticed that when they did his 'comfort obs' that he had BP of 120/80, Oxygen saturation of 98% and a pulse of 113bpm. Whilst the latter of these is high, the first two are not (I have a heart condition, so I monitor mine most days), so I put it to the doctor next day that they might be being a little hasty writing him off just yet.
The Consultant was pulled in, he spent five minutes observing him, then said "I agree, he's got every chance of beating this, end of life care decision reversed, get him back on his regular meds + antibiotics to deal with the lung fluids, take his vitals every few hours".
This lunchtime, four days on, I sat up and fed my Dad cottage pie for lunch (he's hungry, still got some appetite, chewing is becoming an issue though) and saw his face light up when his granddaughter/my niece arrived. Plan now is to get him back to his care home, but in a nursing capacity rather than residential, by the end of this week. His consultant says "he's out of the woods, doing good".
We're not sugar coating it - he is very much in the end stages of dementia, I'd be amazed if he makes Christmas, but I'm now his voice, and I don't think he was ready to pass away just yet. I sadly think that A&E took one look at him and went "83, dementia, care home, chest infection, let's not really try to hard with this one". It was only when we questioned them - and only because I have some rudimentary knowledge of these things thanks to my heart attack - that they were willing to reconsider.
I've discussed the RESPECT plan that Badda kindly mentioned above with the palliative care nurses, just awaiting a call back on it.
Ultimately we, his family, have to decide when is the point to stop trying to keep him alive when it all gets too much for him. It's a horrible position to be in, but I have to keep reminding myself that when of sound mind my Dad a very pragmatic bloke and he would have said "don't make me suffer too long".
Edited by PurpleTurtle on Monday 30th October 15:28
PurpleTurtle said:
Quick thread update.
Ultimately we, his family, have to decide when is the point to stop trying to keep him alive when it all gets too much for him. It's a horrible position to be in, but I have to keep reminding myself that when of sound mind my Dad a very pragmatic bloke and he would have said "don't make me suffer too long".
It is all about his quality of life at the end of the day, when the medics had effectively written him off it is euthanasia by neglect, at least the horrific Liverpool Care Pathway is no more.Ultimately we, his family, have to decide when is the point to stop trying to keep him alive when it all gets too much for him. It's a horrible position to be in, but I have to keep reminding myself that when of sound mind my Dad a very pragmatic bloke and he would have said "don't make me suffer too long".
Edited by PurpleTurtle on Monday 30th October 15:28
As for my Mum, she was in so much pain despite the little machine keeping her dosed up with pain relief that when a student nurse adjusted her bed, the pain was so excruciating I'm surprised she didn't hit the ceiling.
Thread closer here (I have changed my PH username over the last year).
My dear Dad passed away last Saturday night. We got an extra 12 months with him, which was nice as a family. Lots of fun memories shared with him in those times despite his condition. He had some great days when he was lucid and really sharp, it was great to see.
However he also had to move to nursing rather than residential care, upstairs in his care home. Thereafter it was a case of him gradually wasting away, muscular atrophy became a thing and there became a point where like a lot of residents he became bed bound.
That brought on the onset of pressure sores, his GP and care home were very pro-active in spotting and dealing with them (pressure relieving mattress, pads, regular cleaning, pain relief) but I suspect that once these take hold in someone so immobile they are difficult to avoid.
Eventually Dad had a series of bouts of pneumonia, each one involving a trip to hospital where intravenous antibiotics would sort the problem for a few weeks, only for it to return. His heart ejection fraction was down to 25%, yet he still struggled on for a few weeks, always remaining kind and cheerful.
By the time I was with him at the end he had really, really had enough. I told him to take a long, long sleep and he passed away peacefully that night.
Coping with it all is a curious thing. I absolutely cried my eyes out when I had to tell him that he was going into care 18 months ago, but have not been so emotional since. This is probably because we've had an 18 month 'soft-landing' of seeing him gradually slip away. Right now I'm feeling pleased for him, in that he is no longer suffering. It was heartbreaking to see a formerly strong but gentle man, the leading light and hero to our family. reduced to a shadow of his former self. Other times I think that he had 80 bloody brilliant years, and 4 pretty poor ones, lots of people don't get that tenure, so I am grateful for all the time we had with him.
In closing I would like to sat a huge Thank You to everyone who contributed to this thread and other dementia-related ones that I joined, they really helped my family cope with our time with a parent with dementia. Lots of people go through this, seemingly everyone you know has been touched by it in connection with a friend or relative. The PH community taking the time to say "we experienced X, have you tried Y" was a real help to us navigating many unchartered waters. So, again, a heartfelt thank you.
My dear Dad passed away last Saturday night. We got an extra 12 months with him, which was nice as a family. Lots of fun memories shared with him in those times despite his condition. He had some great days when he was lucid and really sharp, it was great to see.
However he also had to move to nursing rather than residential care, upstairs in his care home. Thereafter it was a case of him gradually wasting away, muscular atrophy became a thing and there became a point where like a lot of residents he became bed bound.
That brought on the onset of pressure sores, his GP and care home were very pro-active in spotting and dealing with them (pressure relieving mattress, pads, regular cleaning, pain relief) but I suspect that once these take hold in someone so immobile they are difficult to avoid.
Eventually Dad had a series of bouts of pneumonia, each one involving a trip to hospital where intravenous antibiotics would sort the problem for a few weeks, only for it to return. His heart ejection fraction was down to 25%, yet he still struggled on for a few weeks, always remaining kind and cheerful.
By the time I was with him at the end he had really, really had enough. I told him to take a long, long sleep and he passed away peacefully that night.
Coping with it all is a curious thing. I absolutely cried my eyes out when I had to tell him that he was going into care 18 months ago, but have not been so emotional since. This is probably because we've had an 18 month 'soft-landing' of seeing him gradually slip away. Right now I'm feeling pleased for him, in that he is no longer suffering. It was heartbreaking to see a formerly strong but gentle man, the leading light and hero to our family. reduced to a shadow of his former self. Other times I think that he had 80 bloody brilliant years, and 4 pretty poor ones, lots of people don't get that tenure, so I am grateful for all the time we had with him.
In closing I would like to sat a huge Thank You to everyone who contributed to this thread and other dementia-related ones that I joined, they really helped my family cope with our time with a parent with dementia. Lots of people go through this, seemingly everyone you know has been touched by it in connection with a friend or relative. The PH community taking the time to say "we experienced X, have you tried Y" was a real help to us navigating many unchartered waters. So, again, a heartfelt thank you.
Edited by Shooter McGavin on Tuesday 12th November 10:55
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