A life in the day of.........................

[garnuft]

I have it all the time with my son Sylvia, if it wouldn't hurt him, I would leave them to it and let them learn just how much help he needs.
Occasionally I meet a nurse who understands/has experience his/herself but they are few and far between.

I feel gutted on your behalf that they could even think about introducing a nasal tube because they didn't have the time to feed Dhiren in a way that he requires.

I hate all the empty talk. I hate they way they try to set a person on their back-foot and deflect all the problems as something normal.

I admire you for your calm, persistent manner.
I hope Dhiren improves and you are able to pursue your issues to a degree that a person without support, in the same hospital, is not left to the mercy of these 'angels'.

 

[Grannie G]

Once again many thanks for all your support. Where would I be without TP. Where would Dhiren be if I didn`t have TP.

I saw the assistant manager and the patient liaison manager as soon as I arrived this morning. They wanted a detailed account of my dissatisfaction and were visibly shocked at some of my accusations.

I named a nurse who I found unwelcoming, unsupportive and uncooperative. I accused her of being busy doing nothing. They didn`t seem surprised at my opinion of this nurse.
I named two nurses who were helpful and tried to improve the situation.

I talked through the sequence of events on Tuesday and Wednesday and although they were defensive at times I know the strength of my dissatisfaction could not be excused.

I received profuse apologies which I accepted, but insisted the complaint would still go ahead.
They accepted my right and gave me a leaflet advising me how.

As an aside I criticised all staff for talking about SaLT referral. I told them I knew what SaLT stood for because of my use of Talking Point and because of my work with children with speech and language disorders. But the majority of lay people would`t have a clue what it meant and this use of `medical speak` was completely inappropriate.
This criticism was accepted and noted.

And I told them how much suffering Dhiren had experienced during the fourteen years he has had dementia.
How he had to be admitted to an assessment unit and how he would have been sectioned if he hadn`t agreed to volunteer.
How he had to be dosed with antipsychotics to try to control uncontrollable behaviour. How tormented he was because something was happening to his brain.
How we had been together for 54 years.
And I refused to apologise for being protective of him.

Later in the day the nurse I had complained about came to apologise to me.

She was very sorry she upset me. It is not what she is about.
I accepted her apology but she did upset me, she upset me very much.

She said rules are rules.
I accepted rules are rules but the way rules are implemented is important and her way only added to my distress.

There was nothing more to say.

Dhiren was much better today, obviously without fever, brighter in his face, smiley again eating and drinking, smaller portions but he has been quite ill.

The consultant came , pronounced him clinically recovered and fit for discharge. He was discharged with Penicillin for another 7 days but the second AB, I`ve forgotten which, has been stopped.

He is back in the home.

I`ve phoned and he is sleeping peacefully even though he was quite distraught when he arrived back.

I`ll be there tomorrow and thankfully will not have to ask permission to stay with him all day.

 

[Soobee]

I am so sad to read of your treatment. Thank you for raising a complaint on all our behalfs. I haven't raised a formal complaint despite what I have seen of my parents in hospital. I think you are very strong and I have the utmost respect and admiration for you.

 

[garnuft]

I hug your aching, weary heart Sylvia. x
You give me strength.

 

[lin1]

So Glad Dhiren has been discharged.
I hope he recovers fully from the Pneumonia soon
Hope you find Dhiren is much more settled tomorrow.
Don't forget to look after yourself too Sylvia, you have been through a lot yourself

 

[Izzy]

Well done Sylvia for standing strong. Hopefully this will help others too.

I'm so glad to hear that Dhiren is out and doing well. I'm sure you are much relieved.

 

[CeliaThePoet]

I am far away in New York State, but have read the entirety of your thread quite recently, and felt anguish at this. All I can say is that my thoughts and good wishes are with you. Sylvia, your very straightforward, well-written account of your life in the day are enough to set policy by, and I urge you to always continue them, as many whom you may never know will learn from them, as this nurse certainly shall quite soon, I think.

Hope you and Dhiren are feeling peace, relief, and support.

 

[jeany123]

Thinking of you both as usual, I hope Dhiren continues to improve ,

Jeany xx


Sent from my iPhone using Talking Point mobile app

 

[Rageddy Anne]

Never has so much been owed by so many Dementia Carers to one amazing person! In a world where so many people are described as awesome...Sylvia, YOU really are!

Your dealing with everything, both at the hospital and in your whole experience, and then describing it all so clearly for others to learn from, are invaluable. I hope it's read by everybody with the power to improve things....

I rarely cry but I've cried for you through this horrible episode, and I hope you will now find some rest, knowing Dhiren is with people you can trust. Where you find the strength to deal so effectively with everything that's thrown at you, I can't imagine, and I hope you know that your example must be an inspiration to everyone on here. Just saying thank you isn't nearly enough.

((((((((((((((((( hug)))))))))))))))

 

[Haylett]

Sylvia, I've just read through your post. I'm very glad that Dhiren is back in the home, and that you have stated your case so clearly and succinctly. You shouldn't have had to accept such appalling lack of basic care but I'm afraid it is all too common and will only change thanks to people like you who have the courage and clarity to speak out. Hospital protocols are often completely out of synch for those with dementia; and those who tick boxes don't deliver care at all. Even where they're in place, the "About Me" booklets and the Butterfly schemes are frustratingly just one more box to tick unless professional carers really understand their value as a caring tool to help patients.

For those on the ward to say that you would be in the way because they were caring for their patients (was Dhiren not a patient worthy of care?!) has that kind of Alice in Wonderland logic that sends BP soaring.

I hope today is much better for you both.

 

[NanLorac]

I hope you had a good night sleep last night. You will maybe have to get the complaint written and off you chest for you to start to get over this horrible treatment you both received at the hospital.

Have a nice day with Dhiren today.

 

[sue38]

Well done Sylvia for sticking to your guns although you must be physically and emotionally exhausted.

I'm glad to hear Dhiren is back in the home where he is looked after by by people who know and care about him, and where your voice is listened to and respected, although I rather think the hospital now have respect for you too . It's just so frustrating that you had to go through all this just to ensure a basic level of care for Dhiren.

I hope Dhiren continues to improve, and you get a chance to recharge your batteries.

 

[flowerpot]

Well done Sylvia I along with everyone else have the greatest admiration for you. I'm so pleased that Dhiren is now back safely in the care of the home and you can visit whenever you wish.

Let this be a lesson to us all and united we'll get the hospitals to listen and make sure vulnerable people are cared for properly even if it means family members being there to help and that we don't take 'no' for an answer! (Within reason of course )

Oh I'm so angry and frustrated that this still goes on in hospitals after all the waffle of the media and the so called professionals

 

[maryw]

I'm so glad Dhiren is back in the home. Well done Sylvia for speaking out so clearly and strongly. I too find it upsetting that in spite of all the media, poor care is still going on. I have the most appalling story to relate. A very dear friend of mine's hubby was recently whisked to hospital with suspected appendicitis. Because he has serious health problems, which, one year later he still hasn't had the consultations for, they couldn't operate. He was, however, in so much pain, they did operate. The appendix had burst and was necrotic. Infection had spread to the bowel and there was more talk of further surgery. During this time the ward staff were shouting at him to get out of bed, walk and shower. He was in agony but obeyed. He couldn't face the shower so he hid in there, wet his towel and re-emerged at a suitable time later. The night staff also reprimanded him for not putting his bottle in the right place, so they "accidentally" tipped the contents into his slippers ... Thankfully he responded to IV antibiotics and is now home. His wife would complain but she is too busy trying to pay the gas bill from jewellery-making (she lost her job at the same time as her cancer diagnosis). Hubby lost his last year - Macmillan are fighting for their benefits...

I find stories like yours and my friends horrific Sylvia. Care may have improved in some hospitals,but not all.....

 

[Jo1958]

Sylvia, hello
I'm so sorry to catch up on your news and hear how thing have been, we know that these things happen but when they do the hell we are put through is so real.

Sending virtual hugs and support, thinking of you with kind regards from Jo

 

[jaymor]

You are a strong lady Sylvia and I am sure I speak for many on here saying how proud we are of you for standing so strong for Dhiren and dementia. Dhiren is so lucky to have you.

God bless,

Jay


Sent from my iPad using Talking Point mobile app

 

[Pollyanna]

I am so pleased Dhiren is back in his home and I hopefully you will find him more settled when you see him today.

I'm also full of admiration for how you have dealt with this.

X

 

[turbo]

Hello Sylvia, I hope Dhiren continues to improve . I hope as a result of your complaint that the treatment of dementia patients will improve at that hospital.


turbo

 

[Dibs]

So pleased to hear that Dhiren has been discharged from hospital.
Dibs (Deborah) xx

 

[ellejay]

I'm so pleased Dhiren is out of hospital. You did so well not to be fobbed off & remaining calm , dignified & determined is obviously the way to defeat the bluster of those who should know better.

Well done

Lin x