Wednesday, May 01, 2013

My Mum and my feelings about Hd part 2

hey,
More of my feelings and struggles with keeping mum going and caring for her even when she is a aged care facility. My job is never done and I glad to be there for her. My mum wasn't the best mum in the world but I do believe with all my heart that see tried her best. Without my beautiful mother I wouldn't be here on earth and wouldn't have my most precious children. I just hope I will make my mum proud of me and do something extraordinary with my life.

Over view of a care plan meeting with the staff at mum's aged care facility. I hope you get some tips from it and I hope it makes you understand more about what people with HD go through.

I had a meeting with the staff  to discuss how mum was going and update the care plan. We talked about clothes and they are organizing new clothes and shoes for mum. As mum tends to go through a lot of clothes. She wears them out with all the movements. Her shoes have holes within weeks.
We talked about Dr win neurologist and getting a new referral so he can check mum tablets again and adjusted them, since she can't leave the aged care facility anymore.
With the physio therapist on Tues and Thurs mum does exercises or walking or plays with a ball, I was told mum loves playing with the ball since she is really strong. And when they go to those activities they stop at the cafe to get a iced drink.
I have asked for an assessment to be done within the next couple of months, so its there when we go back to court.
She has been going to bingo, they do it veryyyy so for the patients which is great and they had the local petting animal show come out and mum loved cuddling the animals and was onto the next one just as quick. They had a Anzac's day BBQ and had lots of fun. And they are having in the next couple of weeks is a hatching farm where chicken eggs will hatch and the get to watch and when the chicks are born they get to pat the baby chicks.
I asked about her feeding and she is still at the same pace and have lots of milkshakes and puddings at meals to keep weight on her. The dietitian is watching over her and making sure she has what she needs and has noticed her weight lose.
She is sleeping well as far as they know.
She has been using the walker really well, the only problem they have had is she goes too fast. So the staff have to walk with her.
We also talked about her smoking and what they told me shocked me. They offer mum a smoke and she will have it with a staff member with an apron so she doesn't burn herself but some days she doesn't want any smokes. They give her one when she wants it and if she is busy, she doesn't want any. I can't believe it after all those years and she finally slows down. Mum always said she would rather die of cancer than HD, so she never quit and they only reason she would get up was to smoke.
They are having trouble with mum keeping her pull up pants on and will find her in the morning putting her undies on, so we have decided to take away her normal undies and see what happens. I got the impression that they had everything under control and really cared what I had to say and even having a backup meeting, for all the answer I didn't get.
The aged care may have it under control but I feel it's my duty to be mum's voice and make sure they are doing there best for her.
From Jay