Thanks all,I put myself in their position as a child of a parent who is suffering beyoond my control.A child(be it 39) that wants the best for their parent,a child who will do anything to eleviate the suffering,and a child that wants the best for their parent.I assume(maybe unrightly) that we all sing from the same "hymn sheet".If not no offence intended,I love to care.love elainex
Not eating or drinking
- Thread starter elaineo2
- Start date
I'm sorry I haven't read this thread through before now. I'd like to make a few comments which spring from having been in the situation where I very strongly did not wish my mother to be moved from her current care setting. I won't go the whole hog and do the 'Devil's Advocate bit,' but some of the points that Elaine raises about the family might perhaps at some stage or another have been spoken about our situation as a family so perhaps what I say might shed a little light on their motivation.
Please bear with me as some of my comments may sound as if I am siding with the relatives. I'm not, but I don't think they are necessarily entirely the ogres they might seem to be in every respect. The fact that the family do seem to come in very frequently speaks , to me, in their favour. I'm sorry if that sounds naive, but I have longed for my own siblings to take more interest in my parent's care and the fact that they seem to be quite active says quite a lot. Visiting is tiring emotionally and physically but they haven't given up and walked away. They want to be near her.
As regards the feeding of the resident, I would have been very upset, and often was, if I thought that carers in a residential home were not helping frailer residents to eat if they needed help. I would not have expected them to force feed anyone, but I certainly would have expected staff to offer food on a fork or other suitable utensil, cut up food, find a diet that was appropriate for the resident etc and take time to keep offering other types of food if they didn't succeed at first. When my mother began to have feeding difficulties, I asked for a dietician to assess her diet, and the input she has made has been invaluable, recommending supplements such as Ensure, Calogen, Build Up and Maxijul, checking with me and my mother what food she likes, and how it needs to be offered, i.e as regular, soft or pureed.
She has recommended the setting which is most likely to benefit my mother, i.e quiet company rather than the larger room where there are higher noise levels. She has recommended the addition of cream to food, and she has asked the manager to keep food and fluid charts. Some residents liked to eat in their rooms, and I asked for flexibility on this at times.
My guess is that the family are very scared of the diagnosis of dementia. I believe that they love their relative , because, as I have said, the visiting is a stressful and time consuming business and I don't think that if they lacked feeling for her they would bother. I think they would walk away. I think the dementia diagnosis scares them and whilst there must be examples around the country of specialist dementia units that offer excellent care, in my search for a home for my mother, I only found one home, many miles from her usual residential area, where I would have been happy to see my mother settle. My view about EMI registered homes, from having seen a fair number, is not good. I'm not saying good ones don't exist. I've just very rarely seen any.
So I can understand why they might not wish to transfer their relative from the point of view that the alternative homes, registered as EMI might seem very forbidding. ( They did when I was looking around). However there is another obvious reason. Any change in care setting is traumatic. The fact that elderly people have to be shifted from one home to another at a stage in their life when they might reasonably expect tranquillity and stability, is a very sad truth, that still needs to be corrected nationally somehow.
Of course it is not in your power, Elaine to change the system, and you don't feel you can meet this residents needs anyway, but from the family's point of view, you are trying to eject her from her home, where they were hoping she would be settled. Underneath it all, believe it or not, I think they are happy with your home. They can see that there is something very good about it, and what they would like to do is prevent their relative from going through trauma and upset in an unknown home where they can't keep as regular an eye on their relative.
I don't think there is any monetary issue in this story. If there was, they would be looking for reasons to move her into a nursing home where some element of her care would likelier than not be deemed eligible for NHS funding. The fact that she has leukaemia is actually more likely to warrant nursing care and subsidy , so why would they, if they were mercenary, hide the leukaemia and not push for NHS funding?
Perhaps, as with the dementia, they are in denial about the leukaemia too. Not because they don't want to see their relative properly treated but because they simply haven't been able to get support or advice about the implications, or maybe they have had some advice but not been able to take it in or deal with the emotions that major illness evokes. They have got two horrendous diagnoses looming at them and they simply don't know how to cope. The last thing they want is for their relative to be thrown out of the care home because that will feel as if the carpet is being pulled from under everybody's feet. I know they seem to be acting stupidly and unpleasantly, but I genuinely think they think they are doing what is in their relative's best interests.
As for the admission to hospital by 999. Well I guess that does have to happen but that exercise is also fraught with worry. Hospitals are notoriously poor at recognising the needs of people with dementia, and often an admission can be avoided if a GP will come and check a patient over in the home, or arrange for DN's to visit. One of the upsetting things about the 999 process was that the home did not ring us to say they were doing it, they just did it. We would not have objected but we would have like to have known so that we could get up to A and E to help my mother through the process, even if it was in the middle of the night.
It sounds to me as if things have escalated into a really dreadful breakdown of trust between the family and the home and I would expect the manager to be taking the reins and talking to the family. I would expect her or him to be supporting you and taking responsibility for what is a very upsetting scenario. I do not think it is the family's responsibility to give a complete medical history on admission. That is up to the professionals. My guess is that the family might have thought someone else had done it, or that they were hoping against hope that it was not as serious as they feared and might go into remission or be curable.
There is no legislating for stupidity, but there are professionals who should have checked information and made sure that everyone knew the full diagnosis.
The manager needs to step in with all the diplomacy she/he can muster and discuss all the concerns as openly as possible and without retreating into defensiveness. Personally I think the manager should have taken responsibility for this much earlier and not let you take all the flack and upset. The home, at the end of the day, has the right to say that they cannot cope with the resident, but a clever manager will try to deliver this message firmly but with the least possible further upset to the resident, calmly and with consideration for the difficulty that the relatives will have in finding a home that they are happy with. Hard though this is going to be, the home has to display some trust in the relatives too, because there is nothing to be gained by anyone in forcing the relatives to accept the decision in an atmosphere of acrimony.
I hope I haven't trodden on any toes. I can just see a defence for the stupid family. I may be entirely wrong, but this is how things strike me.
Love and best wishes to you, Elaine, Deborah x
Please bear with me as some of my comments may sound as if I am siding with the relatives. I'm not, but I don't think they are necessarily entirely the ogres they might seem to be in every respect. The fact that the family do seem to come in very frequently speaks , to me, in their favour. I'm sorry if that sounds naive, but I have longed for my own siblings to take more interest in my parent's care and the fact that they seem to be quite active says quite a lot. Visiting is tiring emotionally and physically but they haven't given up and walked away. They want to be near her.
As regards the feeding of the resident, I would have been very upset, and often was, if I thought that carers in a residential home were not helping frailer residents to eat if they needed help. I would not have expected them to force feed anyone, but I certainly would have expected staff to offer food on a fork or other suitable utensil, cut up food, find a diet that was appropriate for the resident etc and take time to keep offering other types of food if they didn't succeed at first. When my mother began to have feeding difficulties, I asked for a dietician to assess her diet, and the input she has made has been invaluable, recommending supplements such as Ensure, Calogen, Build Up and Maxijul, checking with me and my mother what food she likes, and how it needs to be offered, i.e as regular, soft or pureed.
She has recommended the setting which is most likely to benefit my mother, i.e quiet company rather than the larger room where there are higher noise levels. She has recommended the addition of cream to food, and she has asked the manager to keep food and fluid charts. Some residents liked to eat in their rooms, and I asked for flexibility on this at times.
My guess is that the family are very scared of the diagnosis of dementia. I believe that they love their relative , because, as I have said, the visiting is a stressful and time consuming business and I don't think that if they lacked feeling for her they would bother. I think they would walk away. I think the dementia diagnosis scares them and whilst there must be examples around the country of specialist dementia units that offer excellent care, in my search for a home for my mother, I only found one home, many miles from her usual residential area, where I would have been happy to see my mother settle. My view about EMI registered homes, from having seen a fair number, is not good. I'm not saying good ones don't exist. I've just very rarely seen any.
So I can understand why they might not wish to transfer their relative from the point of view that the alternative homes, registered as EMI might seem very forbidding. ( They did when I was looking around). However there is another obvious reason. Any change in care setting is traumatic. The fact that elderly people have to be shifted from one home to another at a stage in their life when they might reasonably expect tranquillity and stability, is a very sad truth, that still needs to be corrected nationally somehow.
Of course it is not in your power, Elaine to change the system, and you don't feel you can meet this residents needs anyway, but from the family's point of view, you are trying to eject her from her home, where they were hoping she would be settled. Underneath it all, believe it or not, I think they are happy with your home. They can see that there is something very good about it, and what they would like to do is prevent their relative from going through trauma and upset in an unknown home where they can't keep as regular an eye on their relative.
I don't think there is any monetary issue in this story. If there was, they would be looking for reasons to move her into a nursing home where some element of her care would likelier than not be deemed eligible for NHS funding. The fact that she has leukaemia is actually more likely to warrant nursing care and subsidy , so why would they, if they were mercenary, hide the leukaemia and not push for NHS funding?
Perhaps, as with the dementia, they are in denial about the leukaemia too. Not because they don't want to see their relative properly treated but because they simply haven't been able to get support or advice about the implications, or maybe they have had some advice but not been able to take it in or deal with the emotions that major illness evokes. They have got two horrendous diagnoses looming at them and they simply don't know how to cope. The last thing they want is for their relative to be thrown out of the care home because that will feel as if the carpet is being pulled from under everybody's feet. I know they seem to be acting stupidly and unpleasantly, but I genuinely think they think they are doing what is in their relative's best interests.
As for the admission to hospital by 999. Well I guess that does have to happen but that exercise is also fraught with worry. Hospitals are notoriously poor at recognising the needs of people with dementia, and often an admission can be avoided if a GP will come and check a patient over in the home, or arrange for DN's to visit. One of the upsetting things about the 999 process was that the home did not ring us to say they were doing it, they just did it. We would not have objected but we would have like to have known so that we could get up to A and E to help my mother through the process, even if it was in the middle of the night.
It sounds to me as if things have escalated into a really dreadful breakdown of trust between the family and the home and I would expect the manager to be taking the reins and talking to the family. I would expect her or him to be supporting you and taking responsibility for what is a very upsetting scenario. I do not think it is the family's responsibility to give a complete medical history on admission. That is up to the professionals. My guess is that the family might have thought someone else had done it, or that they were hoping against hope that it was not as serious as they feared and might go into remission or be curable.
There is no legislating for stupidity, but there are professionals who should have checked information and made sure that everyone knew the full diagnosis.
The manager needs to step in with all the diplomacy she/he can muster and discuss all the concerns as openly as possible and without retreating into defensiveness. Personally I think the manager should have taken responsibility for this much earlier and not let you take all the flack and upset. The home, at the end of the day, has the right to say that they cannot cope with the resident, but a clever manager will try to deliver this message firmly but with the least possible further upset to the resident, calmly and with consideration for the difficulty that the relatives will have in finding a home that they are happy with. Hard though this is going to be, the home has to display some trust in the relatives too, because there is nothing to be gained by anyone in forcing the relatives to accept the decision in an atmosphere of acrimony.
I hope I haven't trodden on any toes. I can just see a defence for the stupid family. I may be entirely wrong, but this is how things strike me.
Love and best wishes to you, Elaine, Deborah x
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Hi everyone,just to let you know,i have just had a call and the resident has passed away.Thankfully with no pain,the hospital were unable to introduce an I.V drip as the residents family wouldn't allow it.Peace at last for the resident.elaine
We couldn't have done anymore than we did
Why does the family ring the home,knowing that the manager will not be there.Again! I have had a call from work.The family have been to the home to colect their parents belongings."Bitter" to say the least.They still insist we wanted their parent "out" of the home,and are now blaming us for their death!Medical intervention doesn't play a part in care in their eyes.To be perfectly honest and perhaps at this moment i may seem uncaring,but the fact of the matter remains that this resident needed care beyond me and my staff,the fact that death was the outcome proves a point for me.Sorry if i have offended anyone,that is not my intention,and i wholeheartedly adore carers at home or away.But "please",listen to carers if they have concerns over our loved ones in care homes.We(i must say perhaps not all) carers are dedicated to the role and want the best for your loved ones.If anyone disagrrees with the care being provided then take it up with the manager at the first instance!And for anyone waiting for an assessment for a loved one,please be honest when asked about your loved ones.Otherwise we might have this situation i have had to endure.There is no need for mis placement if the truth is told.love and best wishes elainex
Why does the family ring the home,knowing that the manager will not be there.Again! I have had a call from work.The family have been to the home to colect their parents belongings."Bitter" to say the least.They still insist we wanted their parent "out" of the home,and are now blaming us for their death!Medical intervention doesn't play a part in care in their eyes.To be perfectly honest and perhaps at this moment i may seem uncaring,but the fact of the matter remains that this resident needed care beyond me and my staff,the fact that death was the outcome proves a point for me.Sorry if i have offended anyone,that is not my intention,and i wholeheartedly adore carers at home or away.But "please",listen to carers if they have concerns over our loved ones in care homes.We(i must say perhaps not all) carers are dedicated to the role and want the best for your loved ones.If anyone disagrrees with the care being provided then take it up with the manager at the first instance!And for anyone waiting for an assessment for a loved one,please be honest when asked about your loved ones.Otherwise we might have this situation i have had to endure.There is no need for mis placement if the truth is told.love and best wishes elainex
Elaine, I'm sorry the whole thing ended up like this: for you, the staff, the resident and the family. I'm afraid there are some peculiar people out there and nothing you can do or say will (or would have) make/made a difference in this case, I don't think. Perhaps they had an unreasonable fear of hospitals: who knows? You and your staff know that you did the best for this resident in difficult circumstances, and if the family can't or won't see that you're never going to change their minds.
Love
Love
In life we always got to blame someone make life easy then facing up to our mistake, let alone someone in grief .
Just a shame that the lady had to die , before it proved a point to the care home also to the family that may never see it like that . no win situation , just another sad lost of a life
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Elaine
I have just read the sad news, and I still think you were absolutely right with everything you did, and the family were absolutely wrong to behave in the way that they did.
But I did also read Deborah's words with some empathy as she gave some possible valid reasons as to WHY the family were behaving in the way that they were. Don't dismiss those possible reasons, though they are no excuse for behaving rudely.
Sometimes when people are really upset they don't behave properly.
Picking up on one of Deborah's points, my mum has AZ, I don't know whether it is classed as minor, major or inbetween, but she has to be in a Care Home cos she needs 24-hours surveillance as she wanders at night (14 times last Saturday!). She was not eating at the right time of day, missing meals, not able to manage her medication for her heart condition. We had no choice, though it was heartbreaking.
The psychiatrist said she didn't need to be in a specialist unit, so we looked at a range of homes (we have plenty to choose from in Buxton, Derbyshire). We rang several before we consulted the SW and some said they could not cope with AZ. Fair enough, though I think if they had assessed mum they probably could have coped with her. She just needs general "looking after" - but in the night especially, so she needed somewhere with an appropriate level of night coverage by staff.
The SW told us of some that could cope, and one really impressed us on paper, as it was about to receive accreditation as the only home in Buxton to have specialist AZ status. We visited it. We walked out being absolutely certain there was no way my mum would be happy there. The home might have been fantastic for severely demented residents, but they were far in advance of my mum, shouting, swearing, many with other illnesses rendering them totally immobile, and I read the Inspectors reports which said "The majority of residents were unable to communicate with us". Well, mum's communication might be a bit gooble-de-gook on some subjects, but she can certainly answer questions like "Do you enjoy the food? Do you have a bath?" - even though she sometimes forgets she has had one.
We found two likely homes that had no specialist status but said they could cope with mum, and chose the one we did because it appeared to have the friendliest staff.
I now wonder if this old lady at Elaine's home didn't have the chance to "settle"? My mum had lots of complaints in the first 6 weeks. The food was awful, the nurses weren't nice, they were treated like cattle at mealtimes, she said, being taken down to the dining room in a lift. I could have complained. I didn't. I thought I would give it time. I dismissed Mum's complaints with "Ah, well, we'll see if it improves and maybe have another think in a few weeks". I would come home and cry that she was so unhappy. If I had been a different person I could have thumped the table and been aggressive with the staff - cos I believed my mum. But I didn't.
Now, two months on, the food is very good, the staff are lovely (especially "that Janice, she is a real joker"), the lift is really convenient. Little compliments start coming out like, "the girl who tidies the bedroom is very good - she cleans the toilet every day!", the manager comes and talks to us she doesn't just sit in her office, and the teaboy is a lovely lad" - he isn't a tea boy, he is a qualified Care Worker, but never mind.
So I didn't complain, but I was VERY VERY worried for those 6 weeks. Maybe this lady's family just didn't give it time.
The non-eating I can't really comment on, it is outside my experience.
What I do know is that if my mum had been in your care home, Elaine, I would have listened to what you said to me and accepted your experienced advice, and then perhaps discussed ways in which mum could remain with you but with some adjustment to her care - perhaps at extra cost. It seems that this family were either too distraught or too stupid to see a way forward that would work for their mum.
It sounds as if the family had a lot of issues and though it sounds cruel, maybe the old lady is better off now without the pressure. Sorry, I hope that doesn't sound wrong, I'd much rather she had had the care she deserved and was still living to enjoy it.
Love
Margaret
I have just read the sad news, and I still think you were absolutely right with everything you did, and the family were absolutely wrong to behave in the way that they did.
But I did also read Deborah's words with some empathy as she gave some possible valid reasons as to WHY the family were behaving in the way that they were. Don't dismiss those possible reasons, though they are no excuse for behaving rudely.
Sometimes when people are really upset they don't behave properly.
Picking up on one of Deborah's points, my mum has AZ, I don't know whether it is classed as minor, major or inbetween, but she has to be in a Care Home cos she needs 24-hours surveillance as she wanders at night (14 times last Saturday!). She was not eating at the right time of day, missing meals, not able to manage her medication for her heart condition. We had no choice, though it was heartbreaking.
The psychiatrist said she didn't need to be in a specialist unit, so we looked at a range of homes (we have plenty to choose from in Buxton, Derbyshire). We rang several before we consulted the SW and some said they could not cope with AZ. Fair enough, though I think if they had assessed mum they probably could have coped with her. She just needs general "looking after" - but in the night especially, so she needed somewhere with an appropriate level of night coverage by staff.
The SW told us of some that could cope, and one really impressed us on paper, as it was about to receive accreditation as the only home in Buxton to have specialist AZ status. We visited it. We walked out being absolutely certain there was no way my mum would be happy there. The home might have been fantastic for severely demented residents, but they were far in advance of my mum, shouting, swearing, many with other illnesses rendering them totally immobile, and I read the Inspectors reports which said "The majority of residents were unable to communicate with us". Well, mum's communication might be a bit gooble-de-gook on some subjects, but she can certainly answer questions like "Do you enjoy the food? Do you have a bath?" - even though she sometimes forgets she has had one.
We found two likely homes that had no specialist status but said they could cope with mum, and chose the one we did because it appeared to have the friendliest staff.
I now wonder if this old lady at Elaine's home didn't have the chance to "settle"? My mum had lots of complaints in the first 6 weeks. The food was awful, the nurses weren't nice, they were treated like cattle at mealtimes, she said, being taken down to the dining room in a lift. I could have complained. I didn't. I thought I would give it time. I dismissed Mum's complaints with "Ah, well, we'll see if it improves and maybe have another think in a few weeks". I would come home and cry that she was so unhappy. If I had been a different person I could have thumped the table and been aggressive with the staff - cos I believed my mum. But I didn't.
Now, two months on, the food is very good, the staff are lovely (especially "that Janice, she is a real joker"), the lift is really convenient. Little compliments start coming out like, "the girl who tidies the bedroom is very good - she cleans the toilet every day!", the manager comes and talks to us she doesn't just sit in her office, and the teaboy is a lovely lad" - he isn't a tea boy, he is a qualified Care Worker, but never mind.
So I didn't complain, but I was VERY VERY worried for those 6 weeks. Maybe this lady's family just didn't give it time.
The non-eating I can't really comment on, it is outside my experience.
What I do know is that if my mum had been in your care home, Elaine, I would have listened to what you said to me and accepted your experienced advice, and then perhaps discussed ways in which mum could remain with you but with some adjustment to her care - perhaps at extra cost. It seems that this family were either too distraught or too stupid to see a way forward that would work for their mum.
It sounds as if the family had a lot of issues and though it sounds cruel, maybe the old lady is better off now without the pressure. Sorry, I hope that doesn't sound wrong, I'd much rather she had had the care she deserved and was still living to enjoy it.
Love
Margaret
This whole ordeal has certainly been a sad state of affairs from the beginning to the end. From the families side, fear coupled by deception to keep their loved one where they thought best, from the care giving side endless unnecessary worry. This poor soul is at peace now and hopefully the family can find acceptance along with peace of mind. Elaine with all the turmoil you and your team have endured a clear conscious will enable you all to move on. Regards Taffy.
Taffy said:
Dear Elaine,
What sensible words from Taffy.
I think this is one family who will never be able to accept that some things are beyond their control or their choice. Now, they have found a convenient scapegoat for their mother's death. But always remember Taffy's words - you did what was right, what had to be done. You put the patient's (resident's) needs ahead of all other considerations. You have nothing to regret, except that you have had to suffer through this whole episode.
It seems some people are never able to accept situations for what they really are, but must always find someone to blame. As a future teacher's aide, you might like this little anecdote!
I used to teach at a school for students with severe emotional and behavioural problems. Many parents, teachers and schools begged to have "their" children admitted, but there were very few places so only the most difficult children were accepted. So, bear in mind, it truly was the "end of the line" - all other possible options were tried before children were accepted at the school.
It was not uncommon for parents to tell us at the school that "We never had any trouble with Johnny (Jenny, Mohammed, Sun Lee, etc.) until they came to this school!"
Thankyou all for your kind replies.The lady had been with us for four years,had the best care given and was a lovely lady.It was a sad day at the home when she died.We did our best as we always do,and will always meet with disdain from families,who we know want the best and sometimes feel the care is not there.I recieved a letter from the family when i went to work this morning.It brought tears to my eyes.I will not diclose the content,but suffice it to say,their apology is accepted and i will attend the funeral.God bless ****.love elainex
Well, you go down on the Star list again, for accepting their apology.
I think Deborah might have been right with her view on the family's stress. It might have been greater than you think.
Much love
Margaret
I think Deborah might have been right with her view on the family's stress. It might have been greater than you think.
Much love
Margaret
Anyone can have opinions be them right or wrong.To voice those opinions is a good thing.To voice opinions and not be able to accept feedback on them is another.We all live and We all learn.I learn from experiences through work.I am so committed to my work that i may sometimes appear mercenary.That is not a true portrayal of me.I just care with an emotion that is very deep,for residents and families alike.love elainex
