Where do you go for help

[teenyturner]

Hi,

I live in Australia so you may not be able to help but I'm desperate.

I no longer leave the house.  I can't walk more than 10-20 meters without having to rest.  The floor starts to feel like it's made of ice and I feel as if I'm going to fall even when I'm standing still.

I rang the occupational therapy department at my local hospital and they won't assess me unless I'm an inpatient so I rang the next hospital (university teaching hospital) and had the same reply. So I rang private OTs, they all said they only do things like foot splints and hand rehab.  

I have already been to 3 different PTs and they all said they couldn't help me.

I got a bit upset and rang my neuros office,  I figured that surely, it was up to him to see that my quality of life was optimized.  I told his secretary (I suspect that she is his wife) that I wanted to be assessed for a wheelchair and other living aids.  She said she would pass the message on to him and get back to me.  I've heard nothing!!

I don't know whether I need a manual wheelchair (my arms are weak but maybe the exercise will help them) or an electric one or a manual one and then a scooter for the shops.  Which ones are best for taking in the car (I'm hoping to get hand controls and drive again), I'm willing to buy another car to accommodate whatever I need but want some advice.   I need to find out if there is financial help available for mobility aids.

I feel as if I have become totally isolated, I'm reaching out for help and everyone seems to be deaf.

I live by myself, just recently I gave in and stopped having my groceries delivered and started buying cooked meals and having them delivered instead.  I have always just barely managed to do my own housework even if it's taken all day just to do one thing but for the last 2 weeks or so I haven't been coping.  I asked my family for help to find a supported living /retirement home to buy and I was told that if you can't do your own vacuuming and mopping you
may as well be dead.  I know they were talking about how they would feel in my situation but they are just so thick that they don't understand how statements like that make you feel like crap.  It almost makes me feel like giving up the fight altogether because there's not much to fight for anyway.  I just don't want to leave my 2 old dogs alone if I die.  I would need to have them euthanized and even the thought of doing that makes me unbearably sad.

Sorry if I sound morbid but I'm having a rough time at the moment and I can't see it getting any better.

Regards

[JaneK1975]

teenyturner, anyone in your shoes would be feeling isolated and depressed. I am so sorry you're going through this! I know there exist opportunities for financial assistance with mobility aids, but I don't know where to go to find them. I am sure someone on the boards will have some insight on that.

As far as getting you the access you deserve to occupational therapy (and you surely deserve it!), have you thought about checking ourself into the hospital that told you they won't help unless you're an inpatient? That was my first thought. I haven't been through what you describe, but I feel like if I was in your shoes, that's what I would be thinking.

Family can be so dense. Mine has said some strange things, too. I hate that we have to deal with that.

Sending hugs,
Jane

[supermum_ms]

Hi,

As an Ozzie you'll find most of whats talked about (assistance wise) on the boards are not available to us over here, we do have a few active Australian members though and hopefully they'll catch your post and send their tips your way.

Each state works a little differently but the basics are suppose to be the same, i've got too many missing peices so forgive me if I dont give you anything new to work with.

1) If you receive any financial assistance, eg disability pension : Contact your SS office and ask to speak to a counselor. Explain your situation and ask for advice on what to do, they will provide assistance but not unless you specifically ask. Additional money and services are stuck in their 'dont ask dont tell' policy red tape, $1000 hardship payment is totally at their discression so be especially friendly but in need. ASK!

2) Contact your local council: Ask to speak to the person who provides 'assisted living' help and advice for your area. Explain your situation and make sure you make it clear you need help now, not months down the road. They should send out a case worker, who will assess your home environment and make suggestions on what they can provide you to make living at home easier. Things like, in home cleaning, meals on wheels, and even medical aids like a scooter, grab bars, recliner etc.

3) GP assistance: Make an appointment with your GP, explain your situation and ask for help. GP's have access to all manner of services, most are free, psychological assessments, 6 week free counselling, Occupational Therapy, alternative neuologist etc should be easily obtainable through your GP.

4) Contact MS Australia: Ask for any assistance they have available to help you, they have assistance programs they can put you onto.

5) Contact Cares Australia: Their roll is to assist the cares but still they are fully informed of any and all assistance thats out there so they should be able to help you with something.

Thats all i can think of, off the top of my head but i'm sure you'll get something from any of them so its worth making those calls.

HUGS.............JJ  

[Valkyrie568]

Jane's idea of checking herself into the hospital sounds like a good one.

I'm so sorry your family said such a hurtful thing! Maybe you should point out the fact that the pampered and privileged seem to enjoy life just fine with someone else doing their vacuuming and mopping! :)

I think times like these are one of the reasons we are blessed to have dogs. They aren't judgmental and will love you unconditionally. They won't quit on you and you can't quit for their sake. Maybe that thought alone will help you to find a way through until you can see some possibilities that will work for all of you!

Would the physiotherapist you mentioned in an earlier post be able to help you with the wheelchair/scooter issues? Or maybe even refer you to an OT? Just some thoughts.

Valerie

[Valkyrie568]

I didn't see the post from JJ. I was typing before it showed up. I am so glad you got some great concrete advice from someone familiar with the services available in Australia! Already a clear direction to move towards and maybe even some light at the end of the tunnel!

[teenyturner]

Thanks for the advice.

I don't have financial problems.  I was lucky enough to get a payout on my superannuation for my permanent disability.  I just thought that if I asked for assistance from the public sector that I was more likely to get help.

I have been to Centrelink, I was just told that after reading the medical reports, they would not allow me to work unless I agreed to be in a wheelchair.  They would not even allow me to do voluntary work!

Well, I have progressed enough to need a wheelchair and I just need some input on the best way to go.  I don't want to spend my savings on a new car, a wheelchair, a mobility scooter, haveing my bathroom modified etc only to find out that I really needed something else.

I have talked to my GP, he said he didn't know what was available (truthfully, I think he's a bit useless but he's likable enough),  I did ring the Council, once again they said they didn't provide services for people with disabilities. I was on the list for Bluecare but the only time they sent someone to help clean I got such negative feedback from my family that I cancelled the service.  The lady who came to clean spent a whole 20 minutes here.  She vacuumed the floor very quickly, then mopped the kitchen floor.  She didn't clean the bathroom or kitchen, change the sheets on the bed or do the washing.  I was told she would do all these things. Because Bluecare were being paid by the government for this service and then a co payment from me as well, I thought it was a rip off.

I have thought about being admitted into hospital to have a proper assessment but how do you go about it? If I go to the ED they will just send me home and my neuro only admits people if they are close to death.  My haem/oncologist would admit me but who in their right mind wants to be admitted to the oncology ward plus he would pressure me into having treatment again. The time before last I was admitted I was told I would be there a couple of days, I was there for a month. Then last time I discharged myself after a week because they wanted me to stay another 3 weeks. I know hospitals are there to help but I hate being there. Everyday seems like torture.

I know I have to bite the bullet and do something and we all have to do things we don't like but sometimes it seems there is not much in life that I do like any more.

Regards

[teenyturner]

Thanks Valerie,  your post arrived while I was typing my reply.

My family don't live with me but they are big on giving advice on how I should live!  That's all they give me....advice. Don't get me wrong, I love them and I know they love me...they are just clueless.

I have a very wonderful friend who has offered to help me but she's in her mid 60s, works full time and cares for a severely disabled brother and chronically ill daughter.  There is no way I will ask her to help me.

I'm sure I will work out a solution, I'm just feeling down at the moment. My GP offered to prescribe an anti depressant, I declined.

And yes, my little dogs keep me sane and give me a reason to get up in the mornings even if it's only to stop them whining for their breakfast. They come to my bedroom door every morning and whine and cry until I get out of bed then they just about burst with happiness.  It doesn't take much to make them happy.


Regards

[sarahw244]

I don't know what your financial situation is, but what about hiring private help?  Like putting an add in the local paper for someone to come and help you with the housework and things a few days a week?  Sometimes that can be cheaper than going through a company.

Say you have someone come for 2 hours a day and you can pay them $10 an hour.  That's $20/day.  If you could afford more, maybe they could come a few times a week.  They could even do things like walk your dogs.  I just suggest this because I used to do this for a living.  You would be amazed what people who do this for a living can get done in just an hour or two!

Around here (in Wisconsin) there are many company's who offer home care services for things like laundry, cleaning, cooking errands, personal cares, etc.  They all charge like $15-$20/hour then they only pay their employees minimum wage.  So hiring someone outright is more beneficial for both, cheaper for the person needing the help and better for the caretaker as they make more money.

Take good care and I hope things start looking up for you.  Hang in there.
Sarah