Urgent advice is needed, especially independent medical advice, and legal regarding our elderly mum.
Our mum has just turned 80 and has had COPD around 10 years, as well as asthma breathing related issues since giving up smoking around 1993. She also has mild glaucoma, diabetes and mild dementia caused by a series of mini strokes these last few years. Her health has deteriorated imho possibly as a result of the covid vaccine and one boaster shot this last 18 months. She very nearly died after the first covid vaccine. I am very much well aware of the VARS and Yellow card statistics and follow UK Column, The Corbett Report, etc. and other independent media for many years.
Certainly she has lost a a lot of weight this last 18 months and has not been in great shape having being admitted into hospital for either low oxygen levels or respiratory infections quite a few times. She has been on oxygen these last 2 years or so. She is currently being looked after at home by various state carers and my sibling when home.
Around a week ago she was admitted again via ambulance to a HDU, high dependency unit. I was constantly told via my sister that she is at deaths door. Turns out this is not the case, certainly a corrupt version of the truth.
Upon discharge my sister discovered that without permission from anyone including my mum, sister and other family, that my mum has been put on end of life treatment drugs, including morphine sulphate, haloperidol, midazolam, glycopyrronaium bromide, lorazapam. My sister was shocked but even more shocked when I told her what all these drugs do and are intended for. Bear in mind our mum has never suffered any form of psychosis ever.
When one of the nurses caught my sister reading my mums chart the day she was being discharged, the nurse literally angrily snatched it out of her hands and told her it was confidental. My sister explained that now she understands every time they told her she was dying she realised our mum had simply been heavly sedated. If there is nothing to hide why snatch away such information and with such anger?
My understanding from UK Column and other such independant media that there is something awry in the NHS regarding elderly persons. It seems that upon being admitted to hospital this time, someone made the decision of a course of action that what amounts to a planned euthanasia of our mum.
She has only been home now for 2 and 1/2 days. While there is a district nurse attending daily to adminster some of these end of life drugs it seems our mum has started to withdraw causing a state of hysteria, mass confusion, panic to the point of screaming, and screaming ‘please help me, ‘please help me, ‘please help me, ‘.
She has been grabbing onto things and lashing out with them such as her oxygen tube. None of this has ever happened before and is clearly a result of the combination of all these very powerful drugs, or her withdrawing from them. My sister said it is like a psychosis, albeit one caused by these drugs, or the withdrawel from them. Apparently also since coming home she has refused to eat a single meal and is not talking, that is not communacatiing at all. All of this is extermely distressing for everyone especially our mum.
I am of the mind that we need to safely, medically start a plan to withdraw her from these end of life drugs to give a her a fighting chance in her last few years or even months as well as seeking alternative treatments, such as manuka honey, herb based etc which we have already been doing. My understanding that aside that they have already induced panic, screaming and some form of psychosis that she would be better off without some if not all if them.
I am no medical expert though, neither is my sister and we are kind of at a loss of what to do. Certainly I feel the haloperidol and midazolam, are most definiviely unecessary as until 2 days ago she has never had any form of psychosis, and the lorazapam in itself is already a very strong anti anxity medication. Also if we decide to withdraw her from some or all of these new medications she has been on for only about 2 and 1/2 weeks, where do we stand legally?
What is the best thing to do? What is the best course of action?
Written by
BatFinkRises
To view profiles and participate in discussions please or .
It is an awful situation and so distressing for you. Do you have a Lasting Power of Attorney for your Mother? This would give you the power to decide what is best medically for your Mum. My daughter saved my life because she refused to let them put me on invasive ventilation. Is your Mother still mentally capable of signing this for you? If not, my suggestion is that you discuss all of your concerns with her GP and find out if they can help and advise you. Good luck
My sister has Lasting Power of Attorney. At the hospital they did try to place her on invasive ventilation and she kept removing it saying how uncomfortable it was describing it as having a wind tunnel forced into her mouth.
Despite some senility and some confusion at times in terms of what year it is, where she is etc. for the most part until she was discharged a few days ago most times she is mentally capable of making her own decisions. I forgot to ask about her GP, I will ask, thank you.
I'm sorry that you find yourself in this situation. As Littlepom suggested, I feel that your best course of action is to discuss it all with your mum's GP and that you do it together with your sister given that she has lasting power of attorney. You may also be able to get more advice from the Asthma+Lung UK team if you phone their contact number 0300 555 2800 after the weekend. They are only available during office hours Monday - Friday. Best wishes to you all.
That seems a good way forward. As your sister has lasting power of attorney does she also have responsibility over medical decisions, ongoing care etc? They are not the same.
You can get advice from PALS (Patient Advisory and Liason Service) re complaining about your mother's care in hospital, but her GP sounds like the best first next step.
What a desperate situation for you all, so frightening. I just hope you can get some help from your mum's GP and stop this horror that’s happening now. Good luck to you. Xxx
My heart goes out to you. An absolutely appalling situation to be in.You need to seek a medication review urgently. Your GP might be the best person as he/she presumably knows your mum and will recognise the changes since going on these meds.
Now, this might sound a bit ridiculous, but also have your mum tested fro urinary tract infection. My mum had that when she was ill. We didn’t know what was going on, but suspected something terrible. She was eating her lunch, stuffed her mouth, refused to eat it or spit it out and then started rubbing potato in her hair.
Paramedics came and off we went to A and E where she tried to put the drs stethoscope in her mouth which he found funny - I didn’t, until he explained it was nothing more that a water infection. Prescribed antibiotics, home in a short period of time and within two days she was back to normal.
Strange things these water infections when we get older.
This is for the author of post. Absolutely check for UTI! My 85 yr old Mom just recovered from UTI. I can tell when she has an infection as she acts very much like your Mom. Two years ago she caught the RSV virus. It nearly killed her. What was most upsetting is that based solely on my Moms frail looks they decided she should not be intubated and a DNR should be placed. Well I did not allow that. I told them to save her. She doesn’t have copd. These last two years have been good and she’s still doing ok. I give her the meds that work for her period. I have discussed in detail what plan is happening with my Mom. I told Dr you need to work with me. So far things are ok. Now in dealing with an elderly one with end stage copd. Think quality of life. See what meds are making things better and what’s making things worse. My Mom has lived with me 23 years now. I know all the ins and outs. Mom still has a decent quality of life. I don’t think copd end of life care is fully understood or handled properly. Cancer patients are managed better. Quality of life needs examined honestly. Many with end stage copd suffer unnecessarily. It’s your Mom. You know her best. I’ll add that everytime Mom comes home from the hospital it takes ten days or more to get her back to where she was. She is withdrawing from meds and doesn’t have a great appetite. But I’m insistent on feeding her myself. Pushing liquids. I have to do intense care until she gets back to herself. My Mom is not as sick as yours. She has heart issues. They so far are controlled. She has good oxygen sats.
Troilus has a good point with the possibility of a urinary tract infection - UTI - older people can very easily grow this infection particularly women due to our anatomy. It's not necessarily due to poor hygiene but can be if a person has been having 'care' or cannot look after themselves properly or not having enough fluids. Untreated it UTI can travel up the urethra to kidneys then bloodstream. VIn the elderly can present just like a severe form of sudden dementia. I understand it's very distressing to witness in a loved one. It should be the first thought for medics when a behavioural change like this is noticed and so simple to test with a dip stick - the district nurse should carry the dip stick kit in her bag. I do hope this is the case. My sister had a massive stroke 12 months ago, first 8 weeks in hospital she had 2 UTIs, two months in an expensive 'nursing' home she had three (she had not one single shower in that two months). Everyone thought she had sudden onset dementia with her paranoia. I then persuaded her family she would be better off at home with carers calling in which has been in place since just after Christmas .
I must add that we're all patients on this forum so we've only got our own experiences to go on. You may get legal advice via Citizens Advice or PALS. Professional medical advice you can get by calling or email the forum's helpline Mon to Fri 9-5.
I do hope things improve for your mum, I really feel for you all. Best wishes, Peege
0300 555 2800 is the helpline number, call first thing tomorrow for medical advice and guidance. My sis is on so many drugs that she would never have agreed to take without researching every single one. The medics seem to have completely ignored her hiatus hernia & I know haven't instructed family or carers company to ensure she sits upright after food and meds. Her husband administers the med without a clue re. what they are & one of the night meds gives her terrible nightmares. She was also given a DNR notice without anyone's input. I understand how awful it is to be so far away and feel for you and your sister.
Absolutely, peege. It’s great to share and gain information here from patients experiencing the same. But take that knowledge to the GP or other health professional.
This sound a dreadful and totally unacceptable situation. I wondered if the CAB could help you get legal advice, as Peege has suggested. Some people have found complaining to PALS effective. Best wishes.
Think that is shocking no way for your Mum to be treated that’s why I have 2 power of attorney as have COPD too doubt if nurse is right in grabbing notes hope you get this sorted out a lot of stress on you and good advice here too regarding infection your Mum might have as this happened to my Mum take care .
Sorry for everything your mum and your family are going through. I see you’ve answered in other replies about a lasting power of attorney. I would have thought if this is set up then they’d have the right to be involved in any medical decisions. Unless your mum is able to make these decisions for herself.
If the drugs are end of life drugs they are only used, literally at the end of life to alleviate the distress of the patient. However everything should be explained by the doctor who has decided that your mother is approaching the end of her life. My husband was briefly admitted to a hospice because he had stage 4 IPF and the doctor explained that when the patient is at the point where they are distressed because of the difficulty of breathing they are used to calm the patient. On his discharge I had these drugs locked in a cupboard. In actual fact they weren't used thank goodness because he had a lung transplant. I think as others have said you need to speak to the GP because nothing about your mum's situation has been explained properly to you, which obviously makes everything questionable. As for the nurses behaviour she was out of order because as your mum's next of kin you have a right to know about your mum's treatment.
Not sure that's quite right BF. The poster said his sister has P of A which means she did have the legal right to see her notes.
We found out when my mum was in a care home that because we didn't have P of A we weren't allowed full input into her treatment or to look at her care plan. The home was very good and kept us updated but legally they haven't got to.
Well I didn't know that hypercat. Does that mean that the hospital wouldn't have to allow me to have a information about my husband's treatment should I have requested it? I didn't need to request it anyway because they gave me all the information voluntarily. However I do find it worrying if that's the case. You learn something new every day.
Yes they will do that of course, but you don't technically have the right to make decisions for them without a P of A. The doctor did discuss a DNR with us for our mum but we were in favour of it.
How horrendous for your mother and all concerned. I have nothing to add except been there with my own mother . We were told she was dying and my sister and I did not agree . We kicked up stink with ward manager at the time and got her home. She lived for another few years!
What an awful situation to find yourselves in. Do involve the GP. If your mother is suffering from withdrawal symptoms from some of the strong drugs the hospital prescribed, your GP will be able to support her with milder drugs to help her come through the withdrawal process, as well as check for UTIs, etc. Wishing you all the best as you fight through these awful challenges.
So saddened to hear of your experience- I can't add anything to the excellent advice in the previous posts except to say whilst all this stress is going on please take especial care of yourself.Keeping you and your family in my heart,thoughts and prayers and hope that you are able to access the information you need for the outcome you need for all concerned .
My first reaction would be to contact your family doctor for advice and if not available then contact your nearest hospice. They are usually very sympathetic to families of elderly people and will/should offer unbiased advice. Best wishes to all your family, Chris.
I know some health boards you used to pay £80 and that was for the medical records has there been a consent to share information? As I’m sure you and your sister should be entitled to look at the records this way especially with care at home being in place
So distressing for you and your family and doesnt seem that neither your mum or you have been treated well. I am sure that some hospitals put everything down to age rather than look at the what is going on with the person. A water infection sounds familiar as this can cause all sorts of behaviour problems. I think as everybody has already suggested talking to her gp would be a good idea. I do hope things can settle down for your mum and you can find some peace of mind x
Good day to you all sorry to here about your troubles i was in local hospital rufusing to take medy fighting with staff in 2012 i have copd phunnia of lungs asma bronical problems now being tested for bowl cancer i just hit 59 got my illness early in life have you tryed citizens advise they may have contacts with medical help people i used them a lot for housing problems if i was you just try it they will be open tuesday i say ghoust rider
I replied earlier and suggested you contacting your local hospice for advice, I forgot to suggest contacting the MacMillan Nurses. I know they are primarily concerned with end of life cancer patients but their knowledge is very valuable. Obviously we do not know all the medical facts so can only give very general advice. Chris.
So shocking BFR - your poor mum, and poor you and your sister. All the advice to go to your GP is crucial - GPs are the gatekeepers of our health and as such they have a relationship with us and should know what is happening particularly as they will be responsible for care after discharge. Also important advice re checking for urinary tract infection. Ive read about this causing chaos with older patients. I do so hope this can be sorted and your mum get back to her usual self. Also as above, good idea to try the forum helpline. All the best to you, your sister and your mum.
Hi BatFinkRises,So sorry to hear of your mums situation.
For what it’s worth my father was put on a drug by a hospital doctor who had no idea of his previous health history or even seen his past records. The drug was wholly totally inappropriate for him, (a Hypertension drug), because he already suffered with LOW blood pressure. They were lowing it further by giving him this drug and IMHO trying to bump him off. He was age 9.
However, he never lost his mind and was still as sharp as a pin. He said to me that if he had to continue like this he might as well be dead! So I interviewed after viewing his medical chart (and photographing it), and making the drug discovery, just as you have with your mum.
When I questioned his medication with the ward doctor (because he had shortness of breath and was dizzy and couldn’t walk), the doctor in charge told me that if I took him off this drug I would have his death on my hands! I replied that if he dies whilst being given this drug I will hold her personally accountable for his death. I found her words appalling.
I took him off the drug and got him out of that hospital the next morning. I warned him not to take any medication given to him that night or morning and to only pretend to take them and to put them all in his pajama top pocket which he did. I even offered to sleep on his room floor. (He had a private room and they couldn’t have stopped me). But he assured me he wouldn’t take any pills given to him.
After 36 hours back at home he was able to walk again, breath through his nose instead of his mouth, no gasping and the following week he was gardening. The drug had left his system no doubt. I even took him to the seaside and he enjoyed a half of shandy…he was never a drinker! He lived a further 2 and 1/2 years.
Sometimes you have to intervene and look after your loved ones because you know them and their health history, better than any doctor does.
I took my Mom off two meds that were lowering her BP way to low as well. I have a good supply of azithromycin as I’m on a weekly regimen. I gave my Mom the antibiotic. She’s been with me 23 + yrs I have all the correct legal forms giving me total say. She came out of it well and is still doing well enough to want to to live over two yrs later. Now I do not recommend exactly what I chose to do. However, Mom is not allergic to azithromycin. And it is a good drug for UTI.
You have to do what you know is best sometimes. I had Power of Attorney but surprisingly no one at the hospital asked to see it! So pleased to hear your story. All the best to both of you. T57 x
Hello there this situation must be very traumatic and exhausting, whats the point of having a power of atorney if you have no say. I believe doctors don't have to agree unfortunately. I have a living will which gives my doctors an idea of my wishes as the patient even in mental capacity failure. In your mums case you mention minor dementia which can be caused by infections ect. (used to work in dementia services) I think you need a mental health specialist assessment, the cocktail of drugs given is not recommended medically for people with mental deterioration. But is often used on the grounds of calming the patient, your mum may be in pain , from what I have gathered about COVID it can cause alsorts of symptoms and last for some time and lots of peoples hearts have been effected by the vaccine. Your mum should have had four vaccine by now with a fifth starting next month. Your mum no matter what has a right to be treated with dignity as do you and the rest of the family. I cannot comment on the drugs but many drugs have interactions as well as bad side effects. Morphine is used to control pain and slow the breathing I am aware as I have had it myself for pain . but it can have other bad reactions not wanted. If it helps it sounds like your mum is in advance stages of her lung condition, and the mini strokes would make her health deterriorate too, an hospice place would be more productive to bring her current flare under control, But places in hospices are very limited, but they can also provide end of life care at home. Do ask for your doctors backing to get things right for you and the mum you love dearly. Every best wish.
I'm so sad and sorry to read of your experience. In many ways it is very similar to what I experienced with my mum...She was diagnosed with dementia (relatively mild/early stage), but was otherwise healthy.
Has your mum actually been formally assessed and diagnosed with dementia? Has she completed the ReSPECT document? - this is a 'patient held' document which is completed between the patient and a healthcare professional (in our case I was also there when my mum completed it). It asks what the patient's wishes are regarding future treatments and medical interventions including if they would / would not like to be resuscitated. It was quite upsetting/emotional to complete, but I was so pleased mum had done it as it helped me later to know what her wishes were - and it stays with the patient if they are at home, in hospital or a care home. Sorry - you may already know all of this!?
My understanding is that the Power of Attorney is only activated if/when a person is deemed to 'lack the capacity' ie if they have become or are becoming mentally incapable of managing their affairs. In my mum's case we had to have her capacity assessed. You probably already know this too?
As others have already said, I would INSIST that your mum is tested for a urinary track infection (UTI), especially as your mum has diabetes. Also maybe ask for her diabetes to be checked, because if that's not well controlled it could be contributing to her weight loss.
My mum had several episodes where she was acting totally out of character, almost identical to what you describe, and worse - including when she was admitted to hospital following a fall, and I couldn't visit due to covid. She was discharged from hospital, seemed fine for a couple of days but then suddenly started acting just as you describe, like a form of psychosis, becoming extremely distressed, in panic, screaming, calling the police, lashing out at me and care staff....it was all put down to a deterioration in her dementia.
It wasn't until I found her discharge summary from hospital (stuffed in her dressing gown pocket) that I saw she had also been treated for a UTI, nobody had told me. We got her tested and it was a UTI again. It happened again on a subsequent stay in hospital, and again twice when she was in a care home - on each occasion her behavior was put down to her dementia, and didn't seem to occur to staff that it could be a UTI until I insisted they test for it.
As others have said, I'd definitely get in touch with her GP. Good luck and I hope your mum's condition improves very soon. Please do update us. xx
UTI is so common. Many times a catheter is the culprit. My Grandma got UTI then sepsis from the infection and died. Granted she was close to 90 however if she’d been monitored closer it could have been avoided. They reuse catheters which is ridiculous. It’s cheap to just get a new one. But this is all to common in a nursing home setting. Too many patients and too few caregivers. We all are going to die at some point but our loved ones really need us to be involved and then we know when it’s best to let them go and when saving them by all means is best. We can help them pass comfortably or live comfortable. We all need someone who loves us enough to put the effort knowledge and experience in. I take care of my Mom and others better than myself. Sadly it’s the position I’m in with Mom living with me. I don’t regret taking care of those I love. We aren’t going to live forever anyway. And those in the world who think only of themselves never truly achieve the perfect happiness they may have been looking for anyway. Might just as well do the right things.
This is awful! All I can add to the previous posts is that palliative care nurses and Hospice nurses are very knowledgeable about drugs, their interactions and side effects. It might be worth seeing if your hospital has a palliative care team or ring your local hospice. They are not just for end of life care. I wish you and your family well and hope you can spend some happy times together. ❤️
I’m so incredibly sorry to hear what you are going through.
Your sister who has the POA needs to speak to the consultant who has prescribed these drugs and ask for the rationale behind each one. Having an anxiolytic and an anti psychotic together should have been a psychiatrist’s decision, and your mum /sister should be told the thinking behind that.
As everyone else has said, make sure it’s not recurrent UTIs making her psychotic and giving her nightmares - she may need antibiotics.
Advocating for an elderly parent is so incredibly hard. When I did it for my
Mother, I had to be quite demanding (not really my nature) to speak to anyone about her care and medication. Mention the whole family needing to be involved in care planning.
Lorazepam is a benzo and therefore addictive, so if she comes off it it will have to be slowly and carefully.
i was on 70 and on geriatric ward temporarily with broken leg and not allowed home because of leg and stairs, and saw the same. Woman was incoherent and when they treated her after many days with antibiotic she was a different person intelligent and well presented and smart . i developed urine infection and was told as it was Saturday to wait until I saw a doctor 3 days later although there was a clinic in the same building that morning. i was appalled and threatened to sue them if it progressed to my kidneys . I was a medical laboratory microbiologist and told her so ;. I got what I asked for which was not the first line of drug biut a more effective antibiotic. I didn't see that sister again but that was an eye opener about one failing of the NHS in which I had had great faith having worked for NHS for most of my life.
I am so sorry to hear of your experiences and reminds me so much of what I came up against when my mother and father passed. There is excellent advice by members here and I don't wish to add to ever increasing levels of information and advice. Suffice it to say I am thinking of you and will continue to read updates. Best wishes JJ
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Caring for mum with severe copd
Any suggestions??
Compassionate Leave - Time off work for Mum with terminal Lung Disease (Usual Interstitial Pneumonia) - Advice
Pneumonia Life expectancy 
Response to my Post.
