It’s been a while since I wrote. Previously I have mentioned how I have struggled with my mum not being mum anymore and having a pending wedding coming up .
Things have got tougher with mum the last month, multiple falls each day , speech much poorer, she now has carers in a morning.
Today she’s been admitted after a fall and I am having numerous battles with getting any information about mum. I live 3 hrs away and everytime I find myself having to explain everything over and over again.
I have power of attorney in place when mum has not linger got capacity but I’m worried I’m still going to have these same battles. Can anyone tell me what to do to prevent these repeated conversations about consent and information over phone etc.
I am a health care professional myself and honestly the lack of empathy I have had over the phone today has been something else.
The PSP has progressed rather quickly with mum the past few months. I just wish I knew a time scale as I’m struggling with knowing what is to come but wondering when it will be.
Sorry for my rambling , just getting my feelings out.
Thanks for reading
Love a worried daughter who is trying to juggle so many things at the moment , I’m losing control and I hate it! X
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sparkle63
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Being on the receiving end was quite a shock... I learned much!
You sound like your in an extra tough corner with it. I'm so sorry.
As for Power of Attorney. Give them a scanned copy and show them the original and then get tough. I mean it. Just tell them that they have a copy on file and they are being unlawful in not giving info. Be blunt and challenging. I speak as an ex. NHS practitioner. They are frightened of making mistakes with confidentiality. You must make it clear that they are failing to adhere to the law. They will get it.
BTW, your Mum is prob. Still there... this is not Alzheimers... The likelihood is that she is just ditancd ith slow cognitive processing and maybe a fw more issues. Do reach out to her, reach through her fog. You might be surprised and being distanced whe will so much want to reach through that fog.
Oh, I so know what you mean by knowing she is in there and missingI her. I cannot shed enough tears on that one.
Go to the ward, get a meeting with the Matron, no one else, show her the LPA, give her a copy and tell her that the responses about confidentiality have been unnacceptable. Adding, tell her that as per the LPA no treatments can be given without your explicit permission.
If a nurse tries to block you tell them that you will put this though to the Patients Liason and Advisory Service, PALS. That is the service which tries to resolve complaints before they are formalised. They hate compaints, compaints are registered and investigated.
It's not about being angry, it's about being blunt.
I do hope this helps a little.
Warmly
Kevin
PS Every hospital has a Patients Advisory and Liason Service - PALS. Just Google you hospital for their contact info.
Thank you so much. I was told not to raise my voice on the phone and that they would hang up!!
Couldn’t believe it, when I was trying to tell them stuff was a nightmare with a capital N! Thank you for the tips that’s great advice my professionalism was starting to go out the window but luckily I rained myself in!
I agree with Kevin_1. You are your mom's healthcare proxy now and should be informed of any and all treatments or diagnosis. Make sure any hospital or facility your mom may go to has the PoA/Healthcare on file. I made PDF's of mine for dad and had a copy on my phone. That way if he ended up someplace without a hardcopy on file I had a backup with me at all times.
Hi first time I have looked at site since I lost mum to CBD last May. I went through just the same as you are describing. Every sift change I found myself explaining again re mum. So on her last stay I wrote a huge list about her condition and copied the CBD book for professionals and taped it to her bedside table - Kevin is right you have to shout the loudest to get action and push for answers. I would come away drained because as we all do on the site we want the best care for our loved ones good luck n take care of you to x x
I am agreeing with Kevin again. I had trouble with a stroppy receptionist at my wife's GP surgery. I showed her the power of attorney forms for health & welfare and she responded to my requests.
One of the reasons we moved Mum (& she agreed to come) was a horrible experience when she was admitted to hospital after a fall and they kept her in but wouldn't tell me why. They just refused to tell me anything and in the end I had to travel 3+ hours down to London to find out. She had an open fracture and they were pinning it. When we went to fracture clinic afterwards and I told the consultant what had happened she said you could have rung me and my secretary would have got me to talk to you, completely missing the fact that they wouldn't tell me which Dr she was under or what she was in for, to guess which Dr was involved!
Since then I have used PALs on several occasions and have found them very helpful. They are certainly worth a call.
Thats interesting my partner has just been granted LPA, will report back if we encounter any difficulties
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xxx 
(That's my anger coming through... Sorry).
My mum is 70 and has PSP 😢
Progress
CBD progressing fast 
Husband progressing quickly 
Mum PSP , continuing health care.
