Dementia, my mum and our public Health System in WA.

[gtfpv]

Originally Posted by Road_Warrior

Mate everyone needs to vent about things that are torturing them, just that some of us feel more comfortable doing it this way. I'm having some difficulties of my own - completely different to yours though - I dread going to work and my partner has just told me she is pregnant and I am really struggling with it. Not sure whether I will start a thread on that yet.

Some things were sent to try us and try us they do, but if you can't talk to someone (who is willing to listen) about them then we have failed as a society.

HAHAHA laughing out loud . relax mate . thats entirely normal ,and happens every day . if you run a poll on that . just include 1 option only . such as . have you got better things to do than go to work and shiite yourself when yourself when a pregnancy comes along . option A- YES, option B- NO , BUT I'M LYING

[grandpa_spec_F6]

Originally Posted by gtfpv

HAHAHA laughing out loud . relax mate . thats entirely normal ,and happens every day . if you run a poll on that . just include 1 option only . such as . have you got better things to do than go to work and shiite yourself when yourself when a pregnancy comes along . option A- YES, option B- NO , BUT I'M LYING

You forgot options 3

3. Can't wait to have kids! (But still shitting myself) <- about where I'm at

[fordOwner]

Cheers again guys, I really do appreciate it.

I have been going to Younger Onset Support Groups they are a help, they really are.

The ACAT assesment says she is classed as Low Care at the moment and will be going to a transitional home as soon as I get her name on 3 waiting lists.
I am viewing a few nursing homes this week so I can put her name on the waiting list.
The place that is highly recommended and close to home will not let me view it, I have to go on a tour, but they only do it every two weeks and the one next week is full (5) so I have to wait another 2 weeks, so now I have to fill out an application with out even seeing it. But thats what I have to do as the transitional home wont take her unles her name is on 3 waiting lists.

As I have Power of Attourny I have to document every cent I spend of her's and the Public Trustee has a hawks eye on me on how I spend it.

And with out going too deep into politics, I was only pointing out that Barnett should support the hospital staff with a higher wages as they go WAY beyond there call of duty (an example is the poor nurses are called horrible names, being told to F off and spat on, hit and things thrown at them all while trying to give my mum her tablets, trying to feed her, wash her and so on).
I did say I praise the steps on what he is doing but common, help the nurses and staff out man.

[gtfpv]

nurses rule .
i just wanted to share some info relating to your post . i had an uncle who died last year, i wasnt too close to him . he had dementia , due to coronary disease , and more so , a long life of alcohol consumption , he went down hill from onset to death in 5 years . he was i guess tolarable in public for 4 years, the last year was in hospital care, unable to go home as he was incapacitated mentally. i have to say it just started with memory loss , like , i dont see mark much these days, ( his son) but mark visited weekly as always, it was on that level for about 3 years , my mother his sister he always knew to the end . strange but true . anyhow at family gatherings in the 3rd year he didnt know me his nephew anymore , so i'd amuse him when he'd call me mate at parties and just play along , we'd got onto this soft drink thats a replica of beer , no alcohol in it , so he thought he was enjoying a beer with us . the last year mum would visit and the same day he would ring and ask her to come over as he never sees her anymore, this would happen daily , but he did always enjoy her visits. the trouble was 5 minutes alone and hed forget he'd seen anyone all day or for months . after that it wasnt long . about 8 months in hospital and he didnt know much about where he was or why, he still knew his family members- son and sister till the last day , he smiled as he died, after several major heart attacks in 24 hours, my o mum asked him if he knew who she was and reassured hhim she is there , he knew . he was 67 . now i know this might be hard , but there are worse ways to go , the end comes rapidly with this . over short months .

[munkky]

hay mate just a check up how are you now and how everything with your mum? hope all is good

[Kieron]

fordOwner, I really feel for you mate. It's a heartbreaking, tough thing to go thru with a few people around you, never mind by yourself.

We went through it with my old man late last year, tore me to pieces to think what he was when younger and how he is now, here's what he was less than 2 years ago -
http://www.youtube.com/watch?v=CyyClmALNBA

With the homes, get onto it quickly and don't just settle on 3, inspect as much as you can, I really hope you don't have to go to the Redcliffe transitional home, it's pretty depressing.
You will find the older inner suburb homes harder to get. If your dealing with Shenton Park, there's a top girl there (forget her name, but I can find out if you like) who really accelerated finding a home, I found some of the other staff typical old style public servants unfortunately.

I also have my daughter in PMH with anorexia which is another mental disease and in both places, I can say those nurses are absolutely fantastic, I really take my hat of to these people, they are doing more than a job for money. Really takes a special person to become one and I support them in their current plight.

Let me know if u want help mate.

[sxckevo]

I have NO idea what your going through mate but i truly admire you! To be honest i've never taken much notice in matters relating to health in Australia but your thread and story has changed my view COMPLETELY. Stay strong man would defiantly get my vote for aussie of the year
Well done for telling your story to the AFF family

[SLO AU XR8]

fordOwner,

I understand exactly where your coming from with all of this. I'm currently going through similar with my family. My grandmother (67 years old) has Dementia, and has had for the past two and a half to three years. Nine months ago, she went into full time care, as my family (Mum, Dad, myself and my grandfather) were no longer able to care for her properly, she went straight into high care.

Dementia has put my grandmother through hell, she now has very limited speach, and as a side affect of everything, is losing muscle control. It hurts to go and see her when she has her arms locked to her chest, and is unable to control any bodily functions.

My family is just lucky that we didn;t have to deal with the problems in the public health system, as my grandmother is in a private care facility run by the Wesley Mission. Good luck with getting your mother into care, and I hope the staff at the centre your mother ends up at are as good as the staff where my Grandmother is.

Brett

[fordOwner]

hey guys, thanks for your kind words, its sad to know but its comforting in a way knowing im not alone by hearing your stories and experiences too.

Heres an update of whats been happening....

Mum was in hospital in the Diagnosis ward for 3 weeks. where she liked it but I knew she had to get her out of there.
I visited her on her birthday one morning at 9am and put up happy birthday banners and cards and balloons and made her so happy, I stayed for about 2 hours then went back to work.
On my way home from work I thought id pop in with some cup cakes and some flowers... When I walked in she was yelling to the nurse and she took one look at me and screamed for me to get out! The nurse said "Its OK its your son! he's here to see you!"
"NO HE'S NO PI*S OFF!" mum yelled at me.
Man this was the most heart breaking thing that I have ever experienced - in less than 7 hours she had completely forgotten who I was! I put my arm around her and she flicked my arm off telling to leave her alone, I placed the flowers and cupcakes on the bed side table and she told me to get rid of them. Heart braking stuff.
For two days she did not recognise me and I thought this was it - im forgotten
however on the third day I managed to get her out into the yard and I bought her a black coffee. She seemed to come around and she has since rememberd me, thank goodness.
Anyway, last week I went into the hospital to visit her as I had not seen her in 3 days and I could not find her, I went to all the rooms and no sign of my mum! I went to the counter and asked where my mother was, their reply was - "Oh my god im so sorry, your mum is not with us anymore"
WHAT!?! DID SHE PASS AWAY?!?!?!
"No, we have transferred her to Osborne Park Hospital, sorry did we not tell you?"
No they bloody well did not! Furious I sped off to the other hospital.
But WOW, this hospital has a lodge out the back which is a nursing home style hospital, where older people (but most of the patients in there are young say 40-50yr olds) with mental problems stay for monitoring. Mum has her own room, and can wonder around the wing where nurses are based and so on.
Shame tho as my mum has sorta come back to "her normal" and she is surrounded by women screaming aloud out of the blue a woman shuffles around drooling every where and another woman doeas not realise where she is and constantly demading to be let out so she can catch the tram so she can get home.
My mum sits there ever so patiently watching it all unfold.
She cries when I visit her now as she misses me but has not once aksed me to take her home and she really likes the attention, schedules and care being given to her.

I have now been told not to put her name down on waiting lists as they want to assess her to see what she would be like in a nursing home. 3 weeks minimum they tell me, but a daughter of the screaming lady has been waitng 18 months, so Im not getting my hopes up.

So a huge weight is off my shoulders to know that she likes it where she is and the nurses there are simply amazing, they are so kind and understanding.

They said they like my mum as she is loving back to them and even supports other paients when they are having a "moment" by rubbing their backs and telling them its all ok.

SO its all going well so far, Just gotta update finalize the assest assesment forms (ARGH!!!)

Cheers again guys.

[fordOwner]

Just another update - I know you guys are not expecting me too but it may be helpfull to some.

Well my mother is now at a "Transfer waiting home" in Redcliff which is near Perth airport I suppose and its a good 45 minute drive from where I dont see her as much as I want to but she is there untill a nursing home room becomes available (In other words untill someone dies).

Most nursing homes require 3 things:
1. Power of Attourney certificate (meaning I have the powers to have the say on what happens to her and her finances)
2. Asset Assesment forms
3. ACAT assesment (Aged Care Assesment Team - this is an assesment to show what needs she requires. My mother has been classed as high care)

So the biggest and best one whih is also close to home only needs 1&3 which was awesome, they have 60 secured Dementia beds so I have put her name down for them.

ALL the others require 1,2&3. So I did an asset assesment through centrelink and I wish I had of lied about her house evaluation (you dont need a proffesional one only an estermated example!) As I put down what I thought its worth and Centrelink writes back telling me how much she's gotta pay for a home when one comes up - UP TO $100 per DAY!!!!!! coz she is high care AND has a valuable house this is whats she must pay! - I dont wanna sell the house as Im living in it on a below average rent which I only JUST scrape through with life.

ANYWAY, She is doing well, when I visit her she just sitting there starring at the floor, and I say hi, and hol dher hand but she looks at me blankly and you can see that she is thinking "I kno wthi sguy from somewhere but who is he? and why is he holding my hand? and paying so much attention to me?"

The nurses says she lights up and laughs non stop when a nurse brings in a puppy which makes me happy to know she still has that inside her. the dilema now is do I re-introduce her to her old dog?? - could go two ways, she will cry with happyness like seeing a dear old friend or she will be confused with the memory of her old life being put in front of her.

There are at least 30 people in this one transfer home so available nursing rooms must be rare, and I cant believe how many young people (I mean 50 yr olds) are in that place waiting for a nursing home for one reason or another.

Well thanks for reading this if you have, makes me feel a bit better by typing my thoughts and as I say it may be helpfull or give you an insight to dementia and our health system.

Whitty.

[Mz Revvv Head]

Great to read a new update & glad to hear your Mum is doing as well as she can.
Thanks for sharing your story, I have read every post,
I really feel for you & your Mum
And being an only child, that would be lonely in it self ...
Be proud of what you have done, for you both,
I believe it takes alot to say I need help or I can't do it any longer,
You are truly amazing in what you have done, be proud of yourself,
I'm sure deep in your Mum, she is very proud of you, even if it at times just doesn't seem it ...
Keep visiting when you can & wear your smile as hard as it is ...

My Granny had a massive stroke nearly 11 weeks ago now,
and she's had scans & still has blood in her head & a calcium blockage also ...
She was in hospital for a month & is now a nursing home,
which just breaks my heart, her speech has got a bit better, but the left side of her body hasn't moved :(
I don't think she will ever walk again or use her left hand,
she's on pretty powerful medication & geez the things she tells me,
I'm like are you sure ? She tells me the staff sit there & watch her t.v, they dance in the hall way, there are 2 dogs that go in her room every night,
1 is black, 1 is brown & white, but each day they are a different color ...
she asks me can I smell them also ? I say no hunny I can't ...
She was on her way to work when it happened,
she's 79 this year & had 7 jobs, she did every week ...
If she hadn't worked all her life I don't think she would be here today ...
Since this has happened, a lot of her belongings have been given away,
as reality has really hit home here & sadly we have to face that, and it's so heart breaking to say the least :'(
We just can't care for her & give her the care she needs,
I wish I could tho ...

Also your Mum's dog, I have seen what pets do in these places
& I assure you it really brightens them up, the joy is just so nice to see ...

Good luck & keep on taking each day as it comes,
no expectations, just slowly & you know she's being looked after ...
You have WON my vote also xox

[StookEB]

Thanks for sharing FordOwner,

I work as an Assistant In Nursing for an Adventist Nursing home (no I'm not adventist lol), so I bassically take care of their hygeine etc.
I work between High Care, Low Care and Low Care (dementia), so I know a bit about dementia residents.

The only way beds free up is when residents die, and many have so much wisdom to tell you its amazing. We have pastors, old NSW rugby players etc.

The advice I will give you mate is dont be afraid of the nurses when she finally gets a bed in a nursing home. Most of the nurses are lovely but some are completes bitches and bloody lazy, I'd write a sign about what she likes etc.
If you find a problem tell their direct carers (the AINs), then the RN (register Nurse). If you find its not fixed after the first time you've told them go STRAIGHT to the Director of Nursing or Deputy Director of Nursing.
Hope that makes sense, I wrote it quickly.

Let me know if you need help.

[fordOwner]

Wow, thank you so much Mz Rev Head.

StookEB thank you too for your advice! ill definatly keep that in mind.

[RiTz]

Hey Whitty,
We are going thru the same thing with my nan at the moment :(
Take her dog in to visit her. I took my old girl (16yo) in 2 weeks ago to see my nan and omg lol she was so happy.. And so was her friend Iris (97yo) who hangs out in her room with her watching tv for hrs on end everyday.. Even though old Mim keeps asking her what her name is lol

Of course you know best whether or not to take the dog in though.

Chin up and stay strong. Lots if people here for you whenever you need to vent / chat 

Jo