How do people manage their home support hours?

[taniaaust1]

Last week the home support agency switch over was finally sorted out, my support hours are the same as they were previously (5 hrs per week). Cause the switch over took so long to be sorted out.. I now have 3-4 weeks from when the new agency had been approved of unused hours (approx 15-20hrs) till when they organised the worker

Im in a fix as Im way behind everything here (my medical appointments and blood tests are behind from early Jan I have ones from then which were supposed to be done not done yet), so much unpacking to still do from the house move, ALL my floors still havent been vaccumed and washed since I moved in Jan etc etc, when she came yesterday she didnt get to take me shopping as i had another blood test..so I got her to take me to do that (unfasting my other one is a fasting one).. so I could really use those buildup hours.

The big issue is as it is I have to split my 5 hrs into two lots of 2.5hrs as I cant manage longer without getting sick to the point of a complete collapse (I also need a rest day between the home support my boyfriend comes on two days too during the week and helps, so i have no spare time during the week to pace out more home support time (and DisabilitySA wont fund it on weekend, thou I usually crash if doing things 3 days in a row.. I need COMPLETE do nothing rest days in between 2 days of pacing things).

Last week around the 2 hr point of having the home support worker here.. I collapsed and was left unable to walk from the home support. Just telling a new person what needs doing is very draining etc and my old support worker used to also help me at times with my pacing as she could see on occassions before I knew.. that I was about to collapse (my boyfriend often helps in that way too when he's around.. telling me to slow down). The new one cant tell when its okay to be talking to me and when it isnt.

If I dont use the spare hours up within the 4 weeks they were given.. I loose them ..so will loose 15 hrs of home support my house could do with (they wont hold them till Im better able health wise to be able to use them).

Another issue.. is thou the states gov agency approved the home support org to take me shopping.. they've limited it to my city suburb!! There isnt things like even a hardware store in this suburb. (the support worker wasnt supposed to take me to the blood test place yesterday as it was outside of my suburb but she did it in the end as she couldnt get hold of her boss).

Im wondering how others manage with their home support? and what I could do. Should I tryt o get the agency to send me two people here at once?? seeing I cant have them around me too long without it causing me a collapse?

(It sucks.. Im worst cause I had to wait to get the home support transfered over and that has worsened me as I had to do more for those weeks (it sucks as I was on new supplements too and they were improving me and now due to all this Im worst then when I started them) . I used to manage the 2.5 hrs twice a week and now arent even coping with that due to that brief loss of the home support. Im even seriously considering saying I cant do that 2.5hrs after last weeks collapse due to it).
...........

I saw the new contract the other day and all its saying is "home support" and no longer mentions helping me get to any medical appointments at all. So im going to have to try to at least get approval to be taken to the local hospital or a local docor (local hospital is out of my suburb). I had more things closer to me before I was advised to move to Adelaide (hospital, hardware etc etc... when one moves into a home Im finding that Im constanty having to get stuff from the handware.. I havent even got curtain hooks and stuff yet).

 

[SickOfSickness]

2 support workers at once is a good idea if they will listen to why and consider it.

If not, maybe you can nap while they do some of the cleaning, or something quiet or something to help you outdoors.

Can they come when your boyfriend is there, and he can direct them and explain to them about your pacing and signs of collapse coming?

Some hardware maybe you can order online or by mail? Or can your boyfriend get some?

 

[Hell...Hath...No...Fury..]

Sorry to hear you're struggling tania, this is exactly what i fear if i ever get the help. The word help used loosely here. I hope you can get it sorted so it doesn't make you more ill. Sounds like a nightmare

 

[taniaaust1]

2 support workers at once is a good idea if they will listen to why and consider it.

If not, maybe you can nap while they do some of the cleaning, or something quiet or something to help you outdoors.

Can they come when your boyfriend is there, and he can direct them and explain to them about your pacing and signs of collapse coming?

Some hardware maybe you can order online or by mail? Or can your boyfriend get some?

Being new person they dont know where anything at all goes.. so im needed to direct everything.. also much of it is still unpacking stuff from my move. Boyfriend wouldnt know where i want things put either.. (on what cupboards to put what). Once everything is unpacked it will be a ton easier as they then will be able to see where I want stuff to go.

Ive asked him many times how he can tell when Im about to crash even before I myself know at times and he says he can just see in in my face but cant say exactly what it is he sees in my face.. thou he said its something to do with my eyes. (I tried to find that out for workers before as it would be helpful info).

My boyfriend has been doing the running back and forth to hardware for me..trying to fix things up etc. Thing is we keep running out of time and he's only here for a very limited time, two afternoons per week. I also need him for many of my medical appointments (he's taken me to blood place twice in past two weeks..with the support worker taking me the other time .. 3 times in 2 weeks).

Now my new vaccumm isnt going now (broke down yesterday) so needs to be taken back to a shop in my old town.. my support stockings.. they gave the replacement ones back in the wrong size.. so they need to go back etc etc.. Its endless amount of running around he's already having to do. (and hes'about to go overseas again soon.. for up to 4mths). I did a list for him the other day of just a little of the stuff and it took 2 weeks of his visits to do that running around for me (we had to get my cane chair fixed last time he was here). He's also trying to chase up one of my supplements.. turns out the 3 chemists here dont sell it.

umm that's a good idea thou. I'll see if the big hardware store is online (im not just getting small stuff from the hardware but large stuff too which could cost a bit to post).

 

[BEG]

Big hug, Tania. That's the catch-22 of it all. We must expend our own energy to get the kind of help we need. I have a house cleaner who comes every other week at 8:30 A.M. Before she arrives, I've already straightened the whole house including putting bathroom items in cupboard and off the counters, loaded the dishwasher so counters are ready to be cleaned, picked up dog toys, put shoes and clothes in closet, washed and dried the duvet (my dog sleeps on the bed), stripped the bed, and put out clean sheets. Basically, every surface and all the floors are clear and ready to be cleaned. I do this to keep the cost down. The house looks great when she is finished. That's good because I'm too exhausted to do anything but go from room to room, recline and admire the cleanliness.

It's so frustrating to get behind on the things we need to do. Because my husband works so many hours, I run this place. In my few functional hours, I am always looking at a long to do list.

I do agree with online shopping. Practically everything that comes in this house has been bought online. But even that takes time!

I sympathize with you in a BIG way and wish you well..

 

[Sasha]

Sorry you're having all this trouble, Tania.

I agree, online shopping - for everything - brilliant. Big things, small things (curtain hooks!), everything. I buy loads off Ebay and Amazon and it's all delivered to my home and if anything is wrong with it, I can mail it back rather than having to schlepp to some store. Now that you're in the city, I hope you are nearer a post office!

Can you write down in advance for the home helps what to do, where things go, etc. and just hand them what you've written when they turn up?

 

[Vincent]

How do you even get home support? I know Medicare wont pay for a home health aide unless you need skilled nursing care, and all of the home health providers are several hundred dollars per month.