Tell us about you:
Hi, my name is Shanaaz, I am 25 years old. My sister is 17 years old and we live in Bontheuwel with my mommy who has late stage Huntington Disease and my daddy who has had a stroke. I also had a baby last year April so my baby is 18 months old.
Tell us about your experience with HD:
My mommy used to stand up but she can’t anymore. She must go everywhere in a wheel chair and she is in adult nappies. We feed her liquids with a cup because when they put the tube by her nose to feed her, she pulls it out. Now the Doctors said we should go for the Peg but I am scared she will put it out. So now we feed her ourselves. She is now in hospital at the Emergency Unit as she had diarrhoea and has been very sick the last few days. My mommy tries very hard to still talk to us but she has lost all communication and stays quiet the whole day with a few grumbles in between when she is hungry.
Support given thus far:
The Day Hospital gives us a pack of 14 nappies a month but mommy uses up to 5 nappies a day. They also give us liquid milk that we give her also 5 times a day.
HASA has helped me with x2 packets of adult nappies and Ensure liquid milk for mommy to drink. They also gave me the ‘talking book’ from Dementia SA about Dementia for mommy to press the buttons and listen to the story. We also got a resource file with information about HD, Predictive Testing, Caregiver Management, symptom relief and tips on caring for the carers. I also got a T shirt and so did my
sister. We also got a bean bag for mommy to throw and play with when she is bored and wants to move around. We will find a way to play the games in the exercise booklets.
We also come to the Neuro Genetic outpatient clinic at Groote Schuur Hospital and get support from the clinical team about caring for mommy.
We also get home based carers who come 3 times a week to wash and dress mommy. I am at work in the day and my sister is at school so mommy is at home with daddy and sometimes a friend comes to help in the day.
The Social Worker is organizing Meals on Wheels for us to help feed mommy in the day because we are short of food sometimes.
How you can help:
Sponsor Shanaaz and her family with:
Meals on Wheels