Quick response needed if possible. - PSP Association

PSP Association

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Quick response needed if possible.

Sarah1972 profile image
27 Replies

Mum has just been admitted to A&E via paramedics due to another fall. My dad has been really ill and in hospital for 9 days so have been backwards n forwards to visit twice a day so Mum not had any rest. Last few days she has been even more off balance than usual. (Usually in wheel chair or walker but needs transporting from bed to commode) however falls are increasing again. She has fallen 3 times in 3 days and this has been whilst assisted. Last two days has been a lot worse and now have to consider a hoist.

In hospital and due to her cognition when asked where the pain is she is unable to tell them it hurts. She is saying it’s fine but when I ask her differently she can tell me. They are currently taking bloods and X-ray on hip back and shoulder. The nurse and porter literally ran with her in trolly making a joke of how fast they could go. Not taking into account her anxiety. They then took her through double doors and when I asked Mum if she was ok they were just rude and closed the door on me and my daughter. Does anyone know what I should be doing to help (I will be complaining) I am at a loss with how to help her.

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Sarah1972 profile image
Sarah1972
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27 Replies
Kevin_1 profile image
Kevin_1

Quick reply

Get someone senior and tell them she has PSP - A degenerative brain condition and that whilst she might have capacity her communication is skewed, but that you can communicate with her.

Offer to 'translate' make it clear to them that failure to include you is negligent and that you will follow through on that.

Do not be frightened - this is the language they understand.

Hope this helps

You can do this.

Sarah1972 profile image
Sarah1972 in reply toKevin_1

Thank you so much I will do that straight away. I also have power of attorney.

Kevin_1 profile image
Kevin_1 in reply toSarah1972

Tell them - That is powerful.

Kevin_1 profile image
Kevin_1

Stay calm - look them in the eye and talk slowly with the minimum of words - That cuts ice

You can do this.

raincitygirl profile image
raincitygirl in reply toKevin_1

Kevin, I would go to you in a crisis anytime ;-)

Kevin_1 profile image
Kevin_1 in reply toraincitygirl

Thank you

I wish I always got it right. ;)

aliciamq profile image
aliciamq

OmGosh!!!! ! I would have to get very loud - CALMLY Very Loud!!!!! Unrelentlessly very loud.

Kevin_1 profile image
Kevin_1 in reply toaliciamq

:) Whatever works :)

Sarah1972 profile image
Sarah1972

Have spoken to a dr and surprisingly he was very helpful. Thank you for your help.

Just goes to show the power of this forum!!

Kevin_1 profile image
Kevin_1 in reply toSarah1972

Those places can be a nightmare esp. on a Saturday night.

Good for you getting heard.

Dadshelper profile image
Dadshelper

Tell the staff and whoever is in charge you have PoA and consider yourself her advocate for medical issues since she has been diagnosed with PSP, explain in layman's terms if they don't know what PSP is. I made a PDF of my PoA and durable power of healthcare, copied it to my phone so I always have it. Since dad is primarily seen at the local VA hospital I have a copy on file there and one other hospital that is closer for emergencies.

Best of luck

Ron

Sarah1972 profile image
Sarah1972 in reply toDadshelper

Great advice Ron. Will get it on my phone ASAP.

Gill4mum profile image
Gill4mum in reply toDadshelper

Can you forward your PDF I would love one on my phone too

Kevin_1 profile image
Kevin_1 in reply toGill4mum

Hi Gill4Mum

Have you done Power of Attorneys for your Mum. Its that that you put on your phone.

I can send you a link about them if you want.

They enable you to make the decisions and choices your Mum would have made when she is not able to make them herself.

Gill4mum profile image
Gill4mum in reply toKevin_1

No as dad still alive but he's struggling too. They both need support but what's best for mum isn't best for dad and visa versa. Another day of tears.

Kevin_1 profile image
Kevin_1 in reply toGill4mum

Hi

I hope you've recovered a bit. That sounded like a traumatic event!

I will do a post on Lasting Power of Attorney in the next couple of days.

It is so totally important that you consider it.

Meanwhile, and more importantly now.

You have an enormous care load by the sound of it. Do you have support coming in?

Home carers?

Family?

Your care burden sounds far to big for one person alone.

Yes, too many days of tears for us. My heart goes out to you all.

Warmly

Kevin

Dadshelper profile image
Dadshelper in reply toGill4mum

Its a copy of a legal document. You should consider getting a PoA if you will be in a position to make any decisions regarding your family member.

Ron

Sarah1972 profile image
Sarah1972

Thanks to everyone responding. It really was pot luck to see if I might get a response. This site has again proved to be so invaluable.

Anyway spoke to a doctor who then gave us the fastest results ever and all x rays were clear and CT scan. He even asked if I wanted Mum to stay in for the night, which I declined as she was scared and very anxious at this point and thinking I was going to leave her would have just increased her anxiety.

I think all the stress of her husband/my dad been so ill that the last few weeks has really took it out of her and that shitty PSP has taken that little bit more from her yet again.

Thank you all again so much i really do appreciate you all xxx

Dadshelper profile image
Dadshelper

Glad to hear the tests were clean, hopefully your mom can get some much needed rest once home.

Ron

Richanne profile image
Richanne

If you still want to complain ask for form from the hospital. PALS is the organisation that acts as advocate for patients/relatives who are unhappy with hospital services.

What a lot on your plate. How on earth are you coping?

Rosemary Rx

Sarah1972 profile image
Sarah1972 in reply toRichanne

I have no idea Rosemary 😳 Mum now laid up full of cold. Just hoping it isn’t flu. They did check her chest yesterday and all was clear so something positive for today x

Spiralsparkle profile image
Spiralsparkle

Glad your Mum hadnt done any serious injuries.

Massive hugs to you all.

Xx

Marie_14 profile image
Marie_14

Sarah you have had a lot of replies so won't repeat. Glad you told the doctor and make sure the fact you have Power of Autorney is on his notes too! Just in case?

Good luck with all of this.

Marie x

D0ttieL0ttie profile image
D0ttieL0ttie

If UK based PALS is where you should make a formal complaint. They are, I believe, in all hospitals. Xx

You have a handful and are handling it very very well. My mother has anxiety anytime my father leaves the house for an errand or short trip. We try to acknowledge it in a calm empathetic way. I would encourage that in the hospital or anywhere she is at with you....just be calm with her and the others (even knuckleheads). If apart from your mother and the opportunity presents itself, then educate the knuckleheads in a calm and articulate manner about PSP. From my experience with my mother and her PSP, most of the medical community has never heard of it and needs some education. Even our lovely and capable Hospice Nurse had never heard of it when she initially began visiting my mother, but she is onboard now. Hospice has been a god send for us here in Pennsylvania.

Careenh profile image
Careenh

Absolutely shocking!! Kevin1 has given the best advice. Good luck my love❤

Satt2015 profile image
Satt2015

Before reading all the replies I totally agree with Kevin, get someone senior for help and fast! I’m probably too late in responding now....I can understand exactly how you feel, I’ve been there with my dad and various non caring professionals in hospital, don’t take any sh** off anyone else they will keep doing a poor job! Thinking of you x

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