Help with uderstanding PD


#1

Hi 

I am new to this site and i am feeling lost and unsure so asking for advice.

My Auntie is suffering with PD and has for 3 years, it stated with the falls and i noticed odd words that she would use. In the end PD was diagnosed and i started to look after her with cleaning, i set up meals to be delivered but in the end after many falls and calling throughout the night i could no longer care for her. She was transferred to a care home and deterioted quickly and needed round the clock care. Now this is where i am getting lost as she can no longer walk, she is having severe hallucinations, very angry but her language is awful with words i would never use. when family turn up to visit it is just shouting and screaming abuse and its heartbreaking. When i read up on PD it doesn't say any of this its all about tremors and how to live with it. This is what i don't understand, why has my auntie deteriorated so quickly and why the behaviour ? what's to come ? is it gong to get worse ? so many questions that i just can find any answers to.

The last time i visited i was only there for 15 minutes as it was to distressing for me. 

Please if u are going through the same thing please get in touch as i feel lost, confused and alone.

Ands sad face

 

 


#2

Hi Ands

 Has your aunt been checked for a UTI ? It can produce severe symptoms like your describing , also is her memory failing? If so maybe a referral to a memory clinic may provide some answers,

Hope that's of some help and you get some answers soon,

   Live well. Cc


#3

Hi Ands

My mum had a water infection she turned into a gremin like creature now back to normal.  check with carehome that your aunt gets help with exercises and has meds on time.  does carehome have parkinsons nurse visits ? some carehomes do not have staff trained adequately in parkinsons please check so your aunt is getting the care she deserves. x


#4
Ands, As with the other posts, at 80 my dad had a urinary infection. He was misdiagnosed and turned from. A very fit and healthy man to a dribbling wreck. He just turned 87 and although not as lively is calm and enjoying life. Definitely bring this issue up with carers as sometimes it is missed. Wish you well.

#5

HI x 

She has been checked for that :( honestly i am at a loss. 

I had a meeting with Mental heath on Monday at the home as to medication and what will help. Why is it when ever i read about PD it doesnt tell u about how bad it actully gets. 

I just need more information that i feel i am not getting. 

Andrea 

 

 


#6

Have you talked to someone about pd who looks after your aunt.  the mental health team deals with mental health issues not parkinsons desease.  some professional nurse doctor who prescribes her medication is best to talk to.  check with home she is seeing a parkinsons specialist and ensure her well being, try adult care services, part of community care/social services.

This site  has  help line you could ring them.  parkinsons is  so different for everyone you really need to discuss this with a medical professional who has knowledge of your aunts   case.  she has to have a pd doctor or nurse to prescribe pd meds , please check as from what you say mental health services involved but no one else? 

Ppp


#7

Thank you for your response 

 

I think you are right that's what i need to do. I have been reading up on PD and it does have many forms but my aunt seems to be having all in excess bless her. 

There is another gentleman at the care home and he is the same apart from the language. I will get onto social services and see if i can arrange a meeting with her PD nurse and see if they have any answers.

They have said she has vascular dementia also brought on by the PD so would bring on the hallucinations. 

i keep reading so much about it but nothing is expanding what's happening or going to happen ? all everyone keeps saying is she isn't going to get better but i know that i just want to know how bad its going to get as i never thought  year ago she would end up like this. 

I wish i could understand 

Andrea


#8

It is possible with a tweak of meds by a parkinsons specialist she gets a little better but it is a progressive illness.  so sorry for you to have to witness  this once you have spoken to a specialist team you should know more.  take care of yourself xx


#9

Thank you x 

No matter how i have looked into PD nothing has peppered me for this. My mum went yesterday and she was only able to visit for 20 mins as it was to distressing for her. 

It would be nice to speak to someone that has a relative that is at the stage that my auntie is at the moment so if there is anyone that is going through this please get in touch.

 

Ands


#10

Hi Ands,

So sorry to hear about your aunt and the concern this has caused you and your family. I'm sure other members will continue to support and advise you. 

You mentioned wanting to talk to someone in the same situation. Perhaps you would consider our Peer Support Service which puts you in touch with others with a similar experience. You can find out more here: https://www.parkinsons.org.uk/content/our-peer-support-service.

Best wishes,

Edwina

Moderation Team


#11

Hi Andrea

Just a suggestion  why not start a new thread, a title change may attract the support you need. " Anyone with a close relative with later stages pd."  maybe post in the carers section.  

Good luck wishing you and your family the very best xx