Sunday, June 30, 2013

Australia national Huntington's Disease awareness week is 2nd-9th september 2013

What will you be doing in your town for Huntington's Disease Awareness week?

I'm going to organize a high tea for toowoomba qld.

Do you live near your loved one who are sick? i would love to know what you think!!!!!

Feeling really sad deep inside right now, I was thinking about people who aren't living close to there loved ones especially loved ones who are sick or slowly dieing. I couldn't imagine not being close to my mother or living to far away or not being there for her or not visiting when I can. I feel really sad when I think of myself when I'm going through symptoms of HD and living in care and not having my loved ones there for me. And not visiting or caring enough for me to want to visit or do nice things for me.

Is this just me?
 or is there anyone out there that loves someone who is sick but doesn't live near them?
why don't you live near your loved ones?
why don't you live near your loved ones?
why do i feel anothers aren't there for my mum?
is it because i different from them? or I put mum's needs ahead of my own? or is it just because I'm special?

I really don't know why, so i would love to hear your comments/emails/thoughts on the subject.

Saturday, June 29, 2013

How can 1 person stand up for a cause by themself? please help me

I'm so frustrated and angry with people not helping me. I'm being made to feel worthless( by a staff member at Huntington's Qld) and not wanted, like I'm the only one fighting for this disease and Huntington's Qld. I'm trying to save Huntington's Qld from closing because of lack of funding and what funding they are apply for might be given to another charity. Not many Australian know about Huntington's Disease and Government don't think we are worth giving funding to. I have to watch my mum suffer with all the symptom's of HD and I would have killed myself just after I found out I had Huntington's Disease, if it wasn't for Huntington's Qld. Christine saved my life and helped my through all of the shit you go through when you find out you have Huntington's Disease. Without Huntington's Qld my children will have no one to help them, when it's time to get themselves tested. And will be in the dark about Huntington's Disease while growing up and watching me going through the symptom's of Huntington's Disease. ??Huntington's Qld has help my family and mum in so many ways over the years. Even 1 of the workers remember my grandmother, who died when I was little. I didn't know my grandmother and all the info I have about her didn't make up for not knowing her but talking to that 1 person about my grandmother was amazing. Huntington's Qld has to open to help all the generations to come with Huntington's Disease or watching someone they love go through the symptoms of Huntington's Disease.
No is no cure for Huntington's Disease, so please help me with my mission to make the Australian aware of Huntington's Disease and what the people with it goes through and their loved one and their carers.
I need to stand up and help others people with Huntington's Qld, so they are not in the dark about Huntington's Disease.

It doesn't feel good having a panic attack about Huntington's Qld shutting their doors. We all need to help them keep their doors open. Being members and paying the membership fee $20 single or $30 family will help keep their doors open because the more members they have the better chance they will get funding. I have put the membership form to download on my facebook page Huntington's Dis AC. If you would like a membership form, I will print and send you one.


regards jaime

Friday, June 07, 2013

special project

I'm doing a special project with my sister kelly today but didn't finish so we will be doing more tomorrow. It's for her tafe work but i'm going to put it on my blog. So we went out to mum's to do the project for good lighting and less noise. After we were done, we went and saw mum for a quick visit. She was asleep when we walked through the door and just when i was telling my sister to back up mum woke up. It was spooky like she knew we were there lol.

Saturday, June 01, 2013

My visit with mum for her birthday today

Well we just spent  2 hours out with mum for her birthday. Mum is 51 today, I can't believe how fast the last year has gone. Mum loved her presents and couldn't get enough of her cake I made for her double choc cake with cream in mum bowl. It was so yummy and moist. I read to mum and then we had a visit with the chicks again. One chick just sat on her and went to sleep. After our visit with the chicks, we took mum back to her room and I read to her until she was asleep. It was a bad day for mum today, she was tired and distant like she couldn't focus. So not much talking and not showing her emotions today. It was a very draining visit on me. I have some photos to show you all.

Melissa and family went out for 25mins this morning and bought out some pictures/drawings the kids made for nanny( and I put them up for them when I arrived today). Melissa's son hayden made the cutest card ever.

I can't believe my other siblings are going to take mum out for dinner. She will be so exhausted, I hope she gets to have a good sleep this afternoon.

I also took down the family tree I made for mum's room and will be rearranging it and putting more onto it. It will be back up soon.
Us and mum opening her presents and having her birthday cake.

Visit with the chicks

Mum drinking one her thicken drinks for weight gain

Kids coloring in while I was with mum

 Where the family tree use to be, replacing it soon.


When do I stop worry about mum?

I take care of mum by :
- Having care plan meetings with the staff at bupa. Which includes talk about all aspects of mum's health plus normal daily living.
- Making sure she has clothes the right size. With the help of bupa and public trustee.
- Make sure I try and visit up to 3 times a week. Since I have 3 children under 7 it's hard to get out there daily, like I want.
- Try to turn up for all her events/parties out at bupa which Mum is involved with.
- Make sure her room is beautiful and cheerful and keeps her brain stimulated.
- Make sure there a things out there for the nurse to interacts with mum. Visitors book, communication book, poster board and family tree.
- Talk to any specialist when needed or go with her to her appointments.
- Read to mum Danielle steel book, which are her favourite books.
- Have a good chat with mum and tell her what is happening in our lives.
- Clean out her wardrobe and tidy her room when needed.
- Feed mum when I go to visit, if at meal/snack times.
- Attend exercise class when I can get in there.
I know it's my job as her daughter to be there for her and do anything she needs me to do. But when do I stop worrying about mum? I think about her all the time and wonder what I can do next. I stress about her safety all the time. I need to be actively involved in mum life and take care of her in my own way. I do try to be there for her as much as I can.
So I guess my question is-
When do I stop worry about mum?
Is this normal for a daughter who's mum has HD?
or Is it because it is just who I am in my heart?
Are you the same or have you been in my shoes? I would love to hear what you have to say.

What mum needs not what people want!

Once again no one listens to me and the doctors orders. It was brought up that mum shouldn't leave bupa for parties etc anymore because of health and safety. So we were waiting for doctor to seek what he thought and get a letter with details of  what he thinks mum is capable of doing. I saw her doctor this week and he agreed with me to certain points.

I'm having trouble with people understanding what mum needs are. Mum has changed so much that she is getting weaker, and gets tired really easy, she is more prone to hurting herself and has a harder time swallowing and falling when she is tired, mum can't control her body functions when consuming alcohol. Not to mention how hard it is to get mum into a car and have her seat belt in safe position, as it moves continuously as mum moves.

This is why it's not safe for mum to leave her safety net of home. There is no reason in the world why they can't go out to see her where she is safe and comfortable. Instead of her being dragged out where too many things could go wrong. Mum should only leave to see her doctors or specialist.


mum birthday

It's my mum's 51st birthday today, so young but her body is old. I can't believe how fast the year went. I'm baking her cake and taking it out to her soon. I got her a beautiful blanket and gloves (made by yvette) and treats for her to eat. I haven't go candles, so I will have to stop on the way there and get some.