KK blog

I'm going to have to write about my daughter Ami some more, to bring relief to myself, I have been too stressed recently, and if it continues, I'll be ineffective as her carer and mother.
There is no-one I can talk about her freely with, in my offline life, for various reasons, and since it also touches on the nature of our human-ness, dear Reader, I hope you will listen patiently..
(or click on another page ;)

Maybe this recent email will give you a glimpse, of the nature of my role in caring for her:

Hi everyone,

So far, so good, Ami is adapting to the greater control over her food without really realizing its happening! 

This could change when I tell her all taxi calls will have to go through me, but once she's finished being upset about it,

I'm confident she'll accept it, especially if the food routine is going well, and she has her treats in place.

I can't stress enough how much better it is to be sneaky with her about food instead of trying to impose

direct control. Choices always work better for PWS people rather than a straight-out 'no'. She will keep trying to get you 

to buy high-calorie foods, please resist and get a low-calorie alternative, and make up an excuse.

If you are cooking with her, do try to get her to help you, and it would be good if you find a few low-calorie recipes,

from the internet or a book, and try them out with her, once you have established several meals that you both enjoy,

the shopping for them will be easier, and you won't have to negotiate with her about what to get each time.

If you are with Ami at lunchtimes, please allow time to stay with her and have lunch together, she will be less likely to

over-eat or make another meal. If you don't have enough time, let Juliet know and we'll work something out.

We want the mealtimes with Ami to be like friends sharing a meal together, so even though you are buying for her with a 

Woollies card, buy something to contribute towards the meal, and let Ami know what you bought.

She is pedantic about money and food, as you probably realize by now, so please don't take it personally, it is a part

of her brain that is affected and she really can't help it. Try and laugh it off, even if its really annoying, if its any 

consolation, she is like that with family, too.

And please put the receipts for the food purchased with the cards into Juliet's box.

Communication is very important for this to succeed, so if you don't have everyone's phone numbers, get them from Ami's

phone directory on the counter.

To keep communication as cheap as possible for everyone, we prefer to use text for immediate attention issues, and email

for matters that don't need an immediate response.

So, when you check her fridge and pantry, and if you see something she needs, remind her to tell the next person to get it,

or if she has a meal there already, or enough left-overs or extra food, text the next person, and say to Ami (lightly and in a friendly way)

'oh, you've got....for dinner, so we won't need to get ....to bring anything'.

The best strategy though, is to avoid having food, apart from fruit and vegies, sitting around.

If Ami gets bossy with you over hours or w/e, please don't argue with her, just let Juliet know, and do what you can to keep the peace.

We can't change some of her behaviours no matter how hard we try, they are hard-wired into her brain, it is a genetic syndrome, not a mental 

illness, and I don't want her to feel bad about herself over things she cannot control, it only sets her back, and she is likely then to 

over-eat for an emotional reason on top of her drive to appease hunger. She will also just get more difficult for you (ie -be a bitch).

In a difficult situation, please phone me to negotiate with her, if you can't resolve it with her. Obviously it is better for your relationship with

her if you can, but there are times when it is just impossible, and I have many years of experience.

To avoid confusion about who deals with what - Juliet is responsible for medical and staff issues and I deal with housing, and food.

There is a bit of an over-lap, and neither of us minds if you can't get hold of one of us, to get the other one instead, but it all works smoother

when we stick to our areas of responsibility.

Any problems or ideas to do with Ami's eating and food, please email me, or send a text and I can phone you back.

Thankyou for all your efforts with this so far, it's going to be great to see her weight go down, which will happen if we get her to stick

to the plan.

All the best!

Unknown to me, Ami had been manipulating extra food from nearly all her carers (we have 5 in the team atm). I couldn't understand how she was putting on weight, despite the food plan we had in place.

She is an expert, too smart for her own good, and adept at well-timed tantrums and sneaky manouvers.

And, she is all to easy to bribe with food, if a carer wants an easy way to make money, they will just give her what she wants, one lady was taking her to a toffee-factory!

I was cleaning her house yesterday, when a carer was 1 hour and 15 mins late. He comes to do art with Ami, help her make greeting cards, for a soon-to-be-realized Facebook page, where she will sell them.

We knew he was picking up eggs and a yoghurt on the way, but not that he would be that late!

Ami gets very distressed when people are late, and starts a phone-call chain reaction of unneccesary stress for everyone involved, she really hates it, and I think it is disrespectful, and makes me think they are not taking their job seriously. We make that clear when they start, and they are supposed to read the info on her syndrome when they start, especially if they are not qualified carers.

So he was taken aback when he realized I was at Ami's (usually I do the cleaning on a Thursday, and leave them in peace to concentrate on the cards), his excise was that he thought we were 'flexible' with the time, and since he did some things in his own time, he thought it wouldn't matter.

I explained again about the need for being on time, and that we don't expect him to do things in his own time, 

but  that it needs to be clear, otherwise it gets too confusing for Ami.

Its a grey area, and Ami simply cannot cope with that, she needs everything to be upfront and consistent, and to know if a carer is due to come at 9.00 a.m, that they will be there at that time.

The concepts of time and money happen to be processed in that area of her brain, that is affected by the dent in her chromosome 15.

He told me he didn't expect to be treated like a naughty school-boy,  lol, I was controlling myself, I've had far too many idiots to deal with during my 26 years of standing between Ami and death, where she would be by now if I had given up.

As close as I have come, I haven't, and I won't, I'm determined to keep her alive and as healthy as I can, until an appetite suppressant can be made, that will work on Prader-Willi Syndrome.

For which I earnestly pray.

One of my other daughters was doing the job of co-ordinator until January, and it was such a relief to be able to share the responsibility! A family member can carry it better than an employee or friends, but it is against gov policy to pay family to help. So she was able to do it only for 6 months, and now she is serving take-away food.

So now, once again, I'm left to over-see everything, and my capacity is stretched to its limits, its simply been too hard, for too long.

I hate being down around Ami, she is a bright bubble more often than not, and none of it is her fault, she puts in effort, I was so proud yesterday when I took her to the pool for a swim, as big as she is, she had her swim-goggles on, and was doing laps!

People look at her, stare at her, she is very big, but she carries on regardless, undaunted - I feel like bashing them sometimes. She can be a bitch, but when she's good, she's an angel :)

She deserves to be fought for, and I am lucky that her siblings believe so too, and will step-up when they can.

She is behind my drive to try and make serious money, without her, I think I would be happy cavorting on the beach and writing a novel for one day..

or I would have had a serious career, and be making enough. So many problems would get solved, with money, and her life continued, until an appetite suppressant is found.

People expect me to have been able to work, and be responsible for Ami, I'd like to see them try!

So, I get looked-down upon, for my poverty, and my low social status, or people get jealous, because of how I look (I'm aging better, and I'm fit) or how I am (I'm good company and know how to have fun) 

and don't help me even when they easily could.

I  see the help I do get however, and I'm grateful it is there. There are some good folk out there, too,

and when Ami and I come across them, we celebrate :)

Anyway, that is probably enough for now, I can feel the burden slipping from my shoulders, and my chores calling me.

Plus, I'm going to get a hair-cut today!

:) XX KK