What is Assisted Living?
If you would like to help HASA's banking details are as follows:
BRANCH CODE : 018005
ACCOUNT NO : 42 029 3426
The purpose of the Assisted Living Campaign is to assist families affected by Huntington Disease (HD) with practical/financial assistance to provide sufficient home based care to the HD affected person.
This campaign is a response to the desperate need for care facilities/resources for late stage HD affected persons. Unfortunately, there are no facilities that have been willing to openly accept HD affected persons in South Africa due to being under resourced and/or under skilled in managing the specialised symptoms of HD.
Therefore, our aim is to raise funds and collect donations to help support families in continuing to care for the patient in the home environment with the appropriate support and resources for palliative care management.
How you can help:
YolandeTell us about you as the carer:
Hi my name is Charlette, I am over 60 years old and look after my daughter who is 40 years old and has have been living with Huntington Disease for about 6 years. I help her to look after her son of 7 years old and daughter of 19 years old. We stay in Beaconvalley, Mitchells Plain.What is your experience with HD:It is so hard seeing how my daughter is suffering. She used to work for Shoprite and now all she does is eat, sleep and watch TV. She doesn’t speak anymore.Support given thus far:She gets a DG and I get a pension. We also come to the clinic for medical help and know about the HASA Angels if I need a home visit.How you can help:
- kimbies/ adult nappies
- Any other support is welcome.
MelissaTell us about you as the carer:
Hi, my name is Catherine, I am 50 years old and I live in Durbanville, Cape Town, with my husband, younger brother and 23 year old niece, Melissa who has Juvenile Huntington Disease. As Melissa’s aunt and carer, caring for her physical and spiritual needs is important. Our daily schedule starts with medicine intake at 7:00am, breakfast at 7:30am and shower or bath at 8:00am. While we try to keep to this schedule, it is difficult at times to do so. Juggling housework, being a carer, working with a 15-year-old teenager with Autism and giving art classes can be a challenge, but also has its rewards.;What is your experience with HD:Melissa enjoys going to the library, a stroll round the block and to the park, in her wheelchair. She enjoyed writing and painting, but can no longer do so, as her hands shake. Huntington Disease has been passed down from my Grandmother, my Dad, uncle and aunt. My older brother passed away from H.D. and passed it onto my niece, Melissa. Juvenile H.D. was passed on from Melissa to her 5 yr old daughter, Elizabeth-Rose. My younger brother has also been diagnosed with H.D. and the symptoms he is experiencing is depression, mood swings, muscle stiffness, twitches and fatigue. Melissa has difficulty walking and needs assistance. Her food needs to be finely chopped as she has difficulty with swallowing and needs help bathing and dressing. Melissa finds it difficult to speak clearly and her right foot turns inwards, which causes her to lose her balance. She has fallen a couple of times when her legs just give in. Her hands are shaky and weak at times, which prevents her from stopping her falls or holding a cup/glass.Support given thus far:We have been fortunate to receive a disability grant for Melissa and she received her medication from the state clinic. A friend referred us to Iris House, who assisted us with a carer for 4hrs a month, so my husband and I can have a night out. We have received family support and support from HASA, in trying to find placement for Melissa. These we have been very grateful to have received, although we have not been successful in finding a home for her.How you can help:
- Make an awareness of Huntington Disease in our community. Because of lack of awareness about H.D., many homes close the door to patients with H.D.
- Finding/funding a group home for H.D. patients. There is a great need for a group home for Juvenile H.D. patients and patients below 60 yrs of age. Many need frail care and old age homes are not a suitable environment for younger patients. H.D. patients are aware of their surroundings and it is their body that is failing them, not their minds.
- Frail care assistance, dental care for Melissa and Joel, a neurologist and a physiotherapist.
AlecTell us about you:
Hi, my name is Carol and I am 45 years old. I am married to Alec who has Huntington Disease and was diagnosed in 2012. We live in Hanover Park with our 2 children.Tell us about your experience with HD:Alec’s late mother suffered from the illness and fought for her life until the very end.Support given thus far:Alec gets a Disability Grant which helps a little but I am the sole breadwinner and do my best to support the family. I have 2 children to look after and pets to feed.How you can help:
I would really appreciate if we can get donations of clothes for the children or an opportunity for more income. My husband also needs something to do during the day so if there is anyone living in our area that wants to volunteer to spend time with him, this will be great.
ClaireTell us about you:Hi, my name is Claire and I am 45 years old. I live in Hanover Park and look after my brothers who are suffering from Huntington Disease. I take them for their medical appointments at the clinic and make sure they are washed and have their meals on time.Tell us about your experience with HD:It has been the hardest thing –watching my family suffer from this illness. My brothers get so frustrated because they know the illness only gets worse.Support given thus far:
We get a disability grant that helps pay for transport to the clinic, food and necessary clothes. The doctors and social worker help us with tips to cope with the illness and connect us with resources. Luckily I get emotional support from other family members, from my church and from God.
How you can help:
- We desperately need a fold up bed because my one brother is sleeping on the floor with a blanket.
- We need adult diapers and a commode because my other brother can’t make it to the toilet on time and if he does make it then he breaks the toilet seat because of his involuntary movements.
- A volunteer carer for a few hours on some days would be appreciated when I have to run my own errands.
ShanaazTell 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 mysister. 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 Adult nappies Ensure Day Carer Respite Care
Hi, my name is Chris and I need your support.
I want to continue to live independently, freely and able to have quality of life for as long as possible, even though I am living with a progressive illness, called Juvenile Huntington Disease.
Tell us about you:
I am an active person. I get up early every day. After breakfast, I go to the shops, library or to the sailing school. I walk, ride my bike and take taxis or the train or a bus to get around. Now that I have a bicycle again I cycle to Simonstown and back in under an hour. I like to go to Kommetjie from Simonstown.
Sailing is my passion. I sailed to St Helena Island twice and once on to Ascension Island and Brazil. The people were nice and friendly and it was beautiful.
My dad had Huntington Disease and eventually died from the illness a few years ago. I didn’t see him since I was small and he took me up in a Cesna once. I like to go to the beach and watching the sea. Swimming is not my thing.
I enjoy good food and having picnics on the beach or in the mountains. Kwikspar has delicious savoury bread. The Lekker's croissant & coffee special after 3pm is my favourite. I always have a chocolate croissant. I like burgers from Spur too. At home we mainly eat eggs and yoghurt and cheese instead of meat.
I also like to play poi and stretch my hands this way. I used to enjoy going to the movies on Tuesdays at Longbeach Mall. Now I watch movies at home. I get dvds from the library. I love Pirates of the Caribbean, Stripes and White Squall. American Sniper was one I watched and enjoyed lately.
I am a Christian and I go to different churches. On Christmas Day last year, we went to the tiny old church near our home before breakfast.
When Aunty Edith, uncle Werner and my gran Joy are here, we go to the Surfers church in Muizenberg. Sometimes we go to Fullies in Fish Hoek or the Simonstown Methodist church. I say prayers for my brother and everyone I love.
What is your experience with HD?
I saw what my brother is like with this illness that we got from my dad. I am lucky because my only worry is my stiffness and pain in my hands. I need a bit of help to do things but I try to move around. I don't think I can windsurf anymore but I can still ride my bicycle so I am grateful for that.
Support given thus far:
I can be with people who care for me without going in to a hospital. I can still do things and go places freely. I don't feel so scared now that I know I am getting help and want to stay free and not in an institution. I get help from the Neuro Genetic clinic at Groote Schuur Hospital, The Day Hospital and other referral pathways.
HASA has raised some funds for my care but they can’t sustain this without funds coming in. I am now living off my Disability Grant with some financial help from HASA, family and friends but it is still not enough to cover my daily care and basic needs.
How you can help:
JHD is a deteriorating illness. I need to think about what I might need down the line like a place to live and someone to care for me where I can still be able to do these things that I love and keep me happy.
Some things that can help me in the meantime:
Mattress Protector (double bed)
Linen i.e. pillowcases, sheets & duvet covers (preferably cotton)
Vegetable Juicer (second-hand or shop-soiled is fine)
Respite Care/ Volunteer to spend time so my carer can get a break.
Encouraging words from HASA Director, Michael Howard:
"If you and Chris can know you are surrounded by the things you love, through the dark times that await you, and most especially in death, you will have made this imperfect world Perfect. That is the purpose of life … learning to die well and through that returning home – to Love."(Michael Howard, 2016)
What is Juvenile Huntington Disease?
Juvenile HD is a form of HD characterized by the onset of symptoms under the age of 20. HD is a neuro degenerative genetic disease whereby the gene positive individual presents with cognitive and behavioural symptoms causing the individual to progressively deteriorate.
What are the HASA Angels
The HASA Angels screen candidates for the Assisted Living project and volunteer their time to stay in contact with families suffering from Huntington Disease (HD).