Carer duties

[Kathleen52]

I would like to ask about what caters in Australia can do for patients. My husband cannot get out of bed without me to lift him to get on the commode to go to the toilet. I have been told that they cannot lift him so st the moment I don’t really see what benefit they can be. I have a hoist but it needs two people so the carer cannot use that. I feel really upset today as it seems I need to be here at all times. Sorry for the rant Kathleen

[honjen43]

Hi Kathleen, don't apologise for the rant. We understand why you need to as many of us have experienced the same frustration and agony.

Sounds like you already have some care for your husband, and that it is not enough. You need to advise the care authority that his needs have increased.

Get back to your doctor, or whoever helped to get this care, and tell them you need more assistance. Scream and shout if necessary. Lack of understanding does seem to be a general problem worldwide, that arises because medical staff don't know or understand PSP, CBD, etc.

You don't seem to have had many replies from Australians. Check by searching for those close to you and maybe getting in touch by private message. Perhaps one of them will be able to help more than I can.

Hugs from across the Ditch!

Jen xxx

[Allan924]

Hey Kathleen..where in Aus are you? Have you contacted the NDIS.

We did and they fast tracked everything for my hubby and now we are meeting with our Co Ordinator on Wednesday.

You sound like your hubby is at a similar stage with this foul disease.

If you need a chat..I am here for you.

Cheers from Kim and Barry from NSW

[Hidden]

I am not sure how the health care system works there but if you need more help or are not happy with the carers you need to contact the agency/dept in charge and let them know your situation. Contact his doctor and let him/her know also. I am normally not one to complain much but I have found the old saying "the squeaky wheel gets the grease" to be true quite often when something for dad needs done.

Ron

[Yvonneandgeorge]

They should of let you double up with them, they seem like they are a waste of time xxxxx

[Dickenson2]

The same situation has just happened to me in the U.K. John has had to go into care as I could not use a hoist on my own and was struggling to lift him out of his chair etc. We gave so many rules on health and safety here that the carers are scared we are going to sue them. Good luck x

[crab2093]

Hi Kathleen 52, This stage has not got to us but I am with you all the way. I am in North QLD and have been told I cannot access the services.. Tomorrow I hope to find out why. But you are so much further along the road in this awful disease. Your situation seems so difficult I cannot imagine . Keep fighting. ... Take care... V

[Kathleen52 in reply to crab2093]

I live in Mackay North Qld The Carer came yesterday for the day. I had a talk with her and it turned out that she was very helpful so I felt a lot better. My Carer has worked in aged care so knew something about PSP. Soon though I will have to get Carer’s to use the hoist. For some reason my husband is still able to eat quite well. Everything else ,his mobility,his eyesight ,his speech are all just about gone. It would be good to know how far down this track we are.

[crab2093 in reply to Kathleen52]

Kathleen52 We are not so far from you, here in Townsville. I do not know how to do a private message but it would be nice to have a direct contact with someone local. We have joined the local Parkinson's group and could be contacted through them if you are interested. ... Glad you got carers in. When I had a couple of nights in hospital recently I was able to access Emergency Carer's Respite to care for Charlie, for 3 days and nights. I had no family around so, if you have not done so already, check that out in Mackay as you never know what may happen. Expect the unexpected. ... Val

[Kathleen52 in reply to crab2093]

Hello Val

Are you on Facebook. We can private message through that and even exchange phone numbers. We do have our children here so we are not alone ,but it would be nice to talk to someone who has the same worries. Kathleen Kenny

[Artteach10]

I will be there soon. Hope you can get two careers at once. What else can we alone do? Sending love. Nancy

[Kathleen52]

Thank you all for your comments Things have settled down a little now