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Nat Hyland
10-11-2006, 05:13 AM
Hi all

I went and stayed at mum and dad's while they went out last night, because my aunt Sharron is staying with them at the moment. My uncle Tony had to go overseas for work for three weeks, and would you believe that mum and dad were the only ones (my mum has 4 brothers and sisters, all but one of whom has grown up children) who offered to look after her while Tony was away - her own children didn't even bother :mad: ! Shar is still not very good, and I blame that almost solely on the fact that she had NOT had ANY rehab following the removal of her brain tumour :mad: ! I believe this is because she had her operation in Sydney, and her STUPID GP in Brisbane didn't even bother to follow up or organise the proper rehab, because my uncle said it wasn't necessary - he is a chemical engineer, not an occupational therapist!

So Shar needs to be prompted and reminded to do even the most simple things, such as putting on her shoes and brushing her teeth. She refused to shower last night, despite the fact that it was quite hot at mum and dad's, AND the fact that she has been diagnosed with SCABIES :eek: ! If left to her own devices, Shar will just sit in front of the TV and do nothing, which, although it might be convenient for my uncle, does absolutely nothing for Sharron. I managed to get Shar to take a walk with me from the house, down to the office (a distance of about 800 meters, down hill one way) to see mum. Unfortunately a drug rep arrived to do business just after we got there, so we ended up not staying long, but mum was amazed I had even got Shar to do that.

Shar has also lost quite a lot of weight, and needs to be encouraged and prompted to eat and drink (especially). I have advised mum to buy some Sustagen (a diet supplement powder that goes in milk) at the supermarket, and give it to Shar instead of the milkshakes she is giving her, which aren't as nutritionally good. Mum also took her to a local adult day centre one day, which was a bit of a disaster, because they had a few things go wrong that day, and were a bit disorganised, but they gave mum some information to be able to contact the local councils in Brisbane that Shar can go to when she is home. I think getting Shar out of the house would be particularly beneficial to her, as well as to Tony. I actually asked mum right after the operation whether Tony had arranged any rehab, and she said he hadn't - a bad move, it would seem.

My mum is a real go-getter, who likes to make things happen, so perhaps with the right information and people on board, she can help Shar to have a more fulfilling existence. Tony will be flying in to Melbourne on Saturday to pick Shar up, and they will fly back to Brisbane together.

Wish them luck.

Nat.

Spiritgal
10-11-2006, 08:21 AM
Good for you for doing what you can...I can see why you must feel angry. I've been really lucky with my family with regards to aftercare and support. Some families are not so responsive, or maybe they're scared of the whole event and a bit overwhelmed by it all? Anything like this is a real reality check, that's for sure. I'm sure with you and your mum doing what you've done, others will pick up on what's required of them.

LIZARD
10-11-2006, 08:36 AM
((((((((((((((((Gnatty))))))))))))))))))))). :(

I'm so sorry to hear this about your Auntie Shar. :( It must be so upsetting to see her like that and know that those around her can't even be bothered to help her help herself. :( :mad: I still can't believe this, too...NO rehab??!! WTH??!! Someone needs to raise h3ll on her behalf and get her help. :( I am so sorry...:(


(((((((((((((((((((((HUGS)))))))))))))))))))))))),

LIZARD :(

Nat Hyland
10-12-2006, 02:34 AM
My mum particularly blamed Shar's GP for this debacle, for not pushing and trying harder for Shar. I said to mum that the problem with GPs is that they are not particularly intimately involved with their patients partly because they usually have so many patients to treat, unlike specialists, who usually have a smaller number of patients and are more concerned for their patient's welfare, because they are more intimately involved with them. I gave her the example of my GP wanting me to make an appointment (and hence be charged $45) to have a form signed for priority listing with Telstra, whereas I sent the form to Ms M and she sent it back signed the next day, no questions asked. I think specialists are more acutely aware of the consequences if things go wrong than GPs are, generally. Many GPs are only good for referring.

Perhaps if Shar's GP hadn't organised rehab, Charlie Teo should have pulled some strings and made some phone calls. and even maybe organised some couselling for my uncle so he would be aware of what Shar would need.

It in some ways, is similar to a person being diagnosed with dementia. There is often a denial (particularly by husbands, in my experience) that there is anything wrong, and a belief that nothing needs to be done, when this couldn't be further from the truth. The more that is done to rehabilitate the person, as soon as possible after the diagnosis, the better.

I'll see what mum comes up with.

Nat.

Discododi
10-12-2006, 10:48 AM
Hello Nat,
Sorry to just jump right into your thread, but from my own personal experience with tumor removal and recovery, rehab would be very beneficial for your aunt. It sounds as if she is having problems with "initiation". This is when a person does not initiate an action that they normally would have done "without thinking about it". I, too, had initiation problems right after my surgery. I had memory problems added and pretty much had to be reminded to do just about everything. It did, however, get better for me, but I accredit most of that to my husband, and my team of therapists I had in rehab.

Is there anyway someone could get in touch with one of her doctors and get a referral to a rehab facility that specializes in brain injury/recovery? (sorry, I am not sure of the system in your country)

Do you know if she has any deficit in memory? This is quite common. Therapy would address this as well.

Best wishes to you, and I hope your aunt gets good rehab care, Dodi

CathyE
10-17-2006, 05:58 PM
It sounds as if she is having problems with "initiation". This is when a person does not initiate an action that they normally would have done "without thinking about it". I, too, had initiation problems right after my surgery. I had memory problems added and pretty much had to be reminded to do just about everything. It did, however, get better for me, but I accredit most of that to my husband, and my team of therapists I had in rehab.

Wow! That's what happened to me! I had to get over the hurdle myself. I couldn't figure out why I just couldn't get myself to do things. I was shunted at age 50 for the 1st time & did get a small & tiny sub dural hematoma.
Boy oh boy can I relate! I'm so glad you posted this!
(That was 5 years ago. Unfortunately I have had problems with slight over drainage pretty much the whole time. Enough so, that I need to have frequent lie downs. And it's hard for me to type on my laptop since I have to be too upright. I am still hoping to find NS to help me. But maybe they figure I should be glad I am as good as I am. (I can funtion very well when I'm not flared, so I have good & bad hours alternating all day.)

Thanks,
Cathy

Nat Hyland
10-21-2006, 01:34 AM
the reason we are so angry is because[I] Shar has not had any rehab. We are all acutely aware that having rehab at the very beginning (as soon as possible after the surgery) was what she should have had. I think the problem has been miscommunication between the hospital (in Sydney) and Shar's GP (in Brisbane), but I do blame my uncle (who should realise as a fairly intelligent person) who did not agree to any rehab for her. I guess it's like most things - you can't physically [I]force someone to do something they don't think they need to do.

Who knows what my mum will be able to do, though - she can be a pretty demanding and forceful person most (all!) of the time.

I am waiting to see what she comes up with.

Nat.