This is my first post to the forum, and I'm sad to say my beloved mother sadly lost her fight with COPD 2 weeks ago at 71. She fought a courageous battle, and deserved to be free. She passed peacefully which eases my pain. I've been going through a range of emotions since mum's death and I felt compelled to reach out here to gauge if others felt the same way I do.
Mum had several inpatient stays in hospital over the last 8 months, and each time I found it extremely distressing. You see Mum was placed on what I believed to be dedicated respiratory wards where the care is supposed to be catered to those suffering with various lung conditions. But whilst there I witnessed things that left me feeling angry and very aggrieved.
A lot of the nursing staff would completely disregard Mum's limitations in terms of movement and expect her to tolerate far more than she was physically able to. I was so angry when doctors and nurses alike would pull her around, asking her to move this way and that when clearly the poor woman was not capable. She would be left fighting for breath after and they didn't seem one bit concerned. They'd just leave her in a state of complete panic, gasping for breath!
I felt like screaming at them 'how would you like it if I pulled you around after you'd climbed a thousand stairs and couldn't get your breath?? That's how my Mum feels!!' My poor Mum was so accommodating to the staff and wouldn't say anything for fear of being singled out as a nuisance, but she deserved so much better, and at the very least some compassion. We never left her side, and wouldn't have been comfortable to frankly.
I'm really struggling to reconcile the quality of care I saw, and cannot believe that staff are not trained to understand the limitations of those with impaired lung function. Especially at the severe end of the spectrum. I just don't get it! Surely they should be far more gentle and sympathetic to people who cannot breath?! I'm at a loss and wanted to know if others have had a similar experience?
So much I want to say but don't want to waffle....
Written by
cosykitty
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How really awful for you. I would want to know why she had been treated that way.its disgusting. At least you have wonderful memories of your mum. Please keep posting we are always here to help and listen xxx
This is awful. In which part of Britain do you live? It sounds like your poor mother was treated disgracefully and maybe once you have gathered your thoughts (you are grieving after all) you should consider a formal complaint. If people don't complain nothing will improve. Do it in your mother's memory.
My deepest sympathies on the loss of your dear mother cosy kitty. I am very saddened to read of the lack of care and compassion shown at a time of great distress for your mother. I can appreciate staff shortages but everyone should know how to treat patients as individuals. This is happening too often l fear.
Bless you and remember your mum with love. Thinking of you. Xxxx
I lost my mom to COPD 4 years ago this month I found the first 6 months the hardest to deal with it was these 6 months I realised just how much I needed mom, just silly stupid things I took her to the local market every week she used to keep her magazines for me and so on.
mom was cremated and now I still think of her every day I can go to the crematorium and sit on the bench by the lake its so peaceful and I go when I feel lonely.
my only regret mom never got to see my 2 beautiful granddaughters or got to see how much joy they brought us.
what I'm trying to say time is a good healer we are always hear
How awful for your mum and for you cosykitty. Very hard to read how badly your mum was treated - this shouldn't have happened. It sounds like you and your family did your darnedest to make up for that and to keep her safe. I agree that if you want to, and the time feels right at some point, do make a complaint. There should be a PALS office at the hospital and they should be able to help you.
But maybe for now its more important to be with your grief, sharing that with you family, and the good memories you have too. Take care.
I'm so sorry to hear this, I lost my mum 2 days before Christmas and it is devastating. Mum spent her last day on a renal ward (she was in full kidney failure) and they were brilliant. However, on a previous admission Ito a geriatric ward) they managed not to notice she had over dosed on pain killers and if my daughter hadn't visited god knows what would have happened. The care seems so patchy as both these events were in the same hospital. You have to ask yourself what is the difference? Is it the way the staff care or some other factor. I'm so sorry your mums last days were difficult, no one deserves that. Bless you xx
Please accept my deepest condolences on your loss. A few months ago someone on the site wrote a poem that summed up the patient medic relationship. I'm sure someone could direct you to it. It struck a cord with all who read it. It should be essential reading for all Drs and Nurses reminding them of the human beneath the set of symptoms.
I hope as time moves on you can find peace and remember the good happy times. As your Mum didn't complain, didn't cause a fuss, she sounded a lovely kind lady. Try to remember the good times. Bless you and her memory.
Hello cosykitty . I am so terribly sorry. I cannot imagine that happening to my mum or anyone else's for that matter. I live far away from my mum in another country and so my worry increases reading this. I cannot comprehend such treatment of an elderly lady who was so poorly. I am just so sorry.
I am at a loss as to what to say to you, cosykitty. I can understand your difficulty in accepting the quality of care your poor mum got and, like you, I wonder why some people enter the nursing profession. I would like to think it's a one-off but, sadly, my mother had similar uncompassionate care in her final days with cancer. (Some previous wards were very good...and some nursing shifts much better than others).
I would agree with other suggestions about making a formal complaint, but if you feel too distressed to do so so soon after your sad loss, please make rough notes of the lack of care she had so that you can refer to them later when you are ready.
My deepest sympathy to you and your family and every good wish.
Tee xx
I understand where you are coming from. I have often wondered what the point of pulling you about is when they can't fix you. I am sorry for your loss. My mum passed away a long time ago. I am glad she is no longer suffering but it is still tough.
So very sorry to hear about the loss of your mum and the unacceptable way she was treated. This shouldn't be happening in this day and age. It must have been very distressing for you.
Try to cling on to all the good memories and don't let your concerns drag you down.
I can't tell you how grateful I am to all of you that took the time to share your thoughts. Apologies for not responding to each comment individually. Mum's care in and out of hospital was questionable. Lots of things were amiss, and we believe she should have had many interventions earlier. Rayswife you are so right when you say what's the point of pulling someone about when they can't be fixed.
I understand nurses are under pressure, and are expected to carry out certain duties. But Mum was not fit for most things. Things like bed baths and changing the bed sheets were too much effort yet they still insisted on these things. And I understand infection control, but surely they can adapt practices to make it an easier experience for those so incapacitated. It's not Mum's fault if they are short staffed or under time constraints!!
One nurse could see I was visibly distressed by the way she handled Mum, and I took her to task about it. I explained we had spoken to numerous members of staff earlier in the day about Mum's anxiety around movement, and I expected it to be highlighted on handover to the next shift. But it wasn't. When I said that's not good enough, and that we expect better communication between staff, she just thrust a piece of paper under my nose to show me that no-one had written next to Mum's name about the panic, and that because she didn't know she couldn't respond accordingly.
She then told me that it was in fact hospital policy to ask family to step out of the bay whilst they undertake their duties, but she allowed me to stay as she knew I didn't want to leave Mum. She acted like she was doing me a huge favour allowing me to be by Mum's side when in reality they could've asked me to leave. Again I reiterate I completely acknowledge they are trained in manual handling, and I can't possibly comment on the rights and wrongs of that as I am untrained, but I still maintain respiratory patients should be handled differently.
I believe at the very least a patient who cannot breath and cannot control anxiety due to lack of breath deserves constant reassurance. Some empathy. It is quite possibly the worst thing a person can endure. I sometimes wonder if the nurses and doctors choose to overlook the psychological challenges patients with impaired lung function face? I know the outcome would not have been any different for Mum in terms of her prognosis, but I feel so strongly that attitudes need to change.
As you can tell I am really ruminating over this, and I certainly don't want to upset or frighten anyone on the forum. Forgive me if I have, that's not my intention. I just feel very passionately now that patients with lung disease are treated with respect and dignity. That's not too much to ask?
I must point out I am not saying all staff were unsupportive, just some. But some is too many in my opinion. I don't think it's justified and I will certainly be pursuing this a bit further after I say my final farewell to Mum on Tuesday. That is my priority...xx
Hello cosykitty, my sympathies for the loss of your mum. It sounds as though you were very close which must have comforted her, especially towards the end.
I was upset at your description of how she was treated but you've had really good, supportive replies I can't add to. The advice to write everything down then put it aside is good. You need now to grieve and mourn the loss of your mother, with your family round you. Later you may want to speak to PALS at the hospital about it.
I'm so pleased that your mum's death was peaceful, and hope that you can find some peace yourself and think of the good memories you have.
Hello Cosykitty, sorry to read about your loss but sharing your sentiment that now your mum is at peace. My sister commented to me on the uncaring aspect of her mothering-in- laws final days in hospital, compared to our own mothers care in a home with GP control. So you are not alone in your concerns for seriously ill patients in hospital. My mum got a much more peaceful death in the care home and we knew when the end was near from the GP who helped. Don't worry about waffling on, if it helps we are here to listen/talk, it's just over twelve months since I lost my mum so share in your feelings, air your feelings of dissappointment with the hospital, allow yourself some time for sorrow, and take care of your own health, thank you for coming to the site to talk with us, speak to you again soon xx
Hi, I'm so sorry your poor mum had to go through this. It's horrible to see a vulnerable person treated this way and I completely understand your anger and sadness. Your lovely mum must have felt so much safer, protected and comforted to have you beside her. May she rest in peace.
It is good to expound. It is not waffle and hopefully it will help you find the right way forward from all of this.
We supported our dearest friend through a frightful situation last year. It was not on a respiratory ward, but not dissimilar in context.
She had been admitted to hospital because of a serious UTI and limited mobility.
She recovered well and was transferred to a specialist rehabilitation hospital to improve her mobility where we visited her every day. Discharge plans were in place due to great progress.
One day, we were asked to wait before we could see her.... Apparently she had been left unattended at a crucial time and had slipped and fallen on the cold hard floor. No damage done we were told and our friend tried to be cheerful about it; always so accommodating.
Later that same evening she had fallen again for the same reason (her care plan stated assistance with all transfers). Where were the staff that day?
She was transferred back to the original hospital with a broken hip with complications.
From there it was pretty much as you have described Cosy.
In our friend's case, she should have been discharged home with an appropriate care package in place.
She would have been safer at home in an environment she knew. Although she had limited mobility, she had never fallen there.
Vigilance, gut instinct, persistence, these are all vital, but we can only do as much as we can. We need to be able to rely on the system.
We need a hospital service which delivers, is completely reliable and does not discriminate against anyone over 50!!
I've been in hospital twice with chest in infections in the last couple of years and on both occasions the treatment I received couldn't have been faulted. It is so sad that your mother didn't receive similar treatment.
Hi cosykitty, while I can`t criticise the care I was given when on a supposed "respiritory" ward the lack of knowledge of some of the staff even to sister level was incredible particularly with patients who weren`t mobile. I`m afraid I stuck my ore in and told the staff nurse who was giving a very elderly lady her inhalers to shake it first because otherwise she`d have been inhaling the propellant. The staff nurse thanked me and said she didn`t know that. When I was still bedbound the nurses didn`t know that I needed to rinse my mouth after using my inhalers myself. They were ready to offer me Nystatin which had been already been prescribed by the consultant. I`m not blaming the nursing staff but the powers that be for not giving a crash course on whichever ward the staff are to be assigned.
I also want to say that I am so sorry your mum received such poor treatment and that you lost her so recently. Your heart must be aching but know that you did all that you could and stayed by her side. God bless, Sheila xx
So sorry for your loss , I too was saddened by the standard of care my mother received in hospital for lung cancer . I think 1 in five showed any compassion, like you I spent hours with her getting her comfortable. I know hospitals are stretched to breaking point , but that shouldn't interrupt how you treat someone. ( the old saying treat someone, how you would like to be treated). A day and a half before she passed away I had a phone call in the early hours to say my mum was calling for me and could I come up as soon as , when I arrived less than half hour later she had been heavily sedated . I never got to speak with her again , I stayed by her side and she passed away the next morning. This was 2 years ago and I'm still struggling to know why . Looking back I should have asked the question but the grieving and shock took place , ( this all took place within 5 weeks of diagnosis) I have three older brothers and although we're all very close , they seem to except it was just part of the course. I now have been diagnosed with C O P D . Which scared the living daylights out of me , but have been reassured by the kind people on hear that it can be managed. Just getting things off your mind and talking to others will be of great help . I have to say I was lucky to have such a special and close relationship with my mother , and that I treasure. You have to do what's right for you, and I feel for you . Take care
Hi so sorry for your loss I can believe all you have said, a lot of people have no idea how this awful disease strips us of any dignity and fills us full of fear , you would think nurses etc would understand more but they don't have the given time I'm not saying they are all the same but they ought to put a plastic bag on their head after they have done three laps of the ward to feel how terrifying it is, your poor mum it's a good job she had you, may she now rest in peace, xx
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