I am 13 years old and I am a carer to my mother. My mother has type 1 diabetes (an autoimmune disease) and although it may not be a debilitating disease it can still be very difficult for her and when things impact mum in a major way they impact all of us. My mum often has to test her blood’s sugar levels and inject herself with insulin. My mother goes through mass amounts of stress and this can be dangerous for her so I must be there to support her by helping out around the house and making sure my siblings are taken care of. I don’t have to do much around the house because mum does most of it but sometimes when things like laundry need to be done I am able to step in and help. I have two younger siblings that I live with, a ten month old and a five-year-old, and I love each of them to bits but sometimes it can get a bit difficult for mum so I have to make sure they are not hassling her. To be honest they can get a little difficult for me too but I know that mum has important things to do. My role as a carer is to help mum when needed whether it be helping with her medicines or helping around the house, I try to help.
I care for my partner of 13 years, who has various mental health problems. Since getting a cat she has not had an anxiety attack or hospital admittance, and is feeling much better and enjoying life.
I take care of my husband, Dennis, and I have made a conscious decision to be positive and happy even though his health is deteriorating and he has become very deaf and reliant on me to make important decisions. We have purchased a rather expensive hearing aid but he imagines he has a problem with wax. At one point he worked on airplanes and this has caused the deafness. The nerves in his ears are affected and inoperable. He has kidney disease and may require dialysis and it seems to take a while for him to register when we have a conversation. We try to enjoy the movies, art and travel as much as possible. He does paint but he has arthritis and hasn’t been able to hold a brush for a while. I must admit that there are times when I would like to have a bit of respite, but he is totally dependent on me and very protective of me. I find that humour is most important in our lives.
My mum's been suffering with mental and physical illness for the past 35+ years. I’m only 24 but her being ill is my normal. Due to this I was under the guardianship of the minister until 18. Once I did turn 18 I returned to visit my mum to realise she wasn’t being cared for and left to fend for herself in a world she doesn’t understand. Her physical health was horrible, I honestly didn’t think she would pull through. Her mental health also wasn’t being monitored so she wasn’t in a good state. After this realisation I had to help her. She is now doing so much better. Her physical health has improved greatly and her mental illness is now improved and closely monitored. I’ve been doing this for the past six years now and in that time mum's improved, I’ve had three children and our family is healing after so much missed time when she couldn’t care for me as a child. My goal is to give mum the best life she can have within the limits of her physical and mental health. She’s getting to watch her grandchildren grow and give meaning to her day. My kids know no different. We check on grandma and we look after her. This is our family’s normal. I honestly would not change it though. Proud to be a carer.
I'm currently 65 and retired but my intellectually disabled son is 25 and living with myself and his sister. My ex-wife moved out when my son was 18. The split was amicable and we have included his mother in our family life in a limited fashion being allowed full access rights - she visits every couple of days and has mum and son shared time socializing. My story is not one of hardship with my son but consistency. He requires supervision and that usually falls to me as well as caring for his health needs. His employment at Bedford was organized by his mum just after the split which indicates the level of co-operation that we still have in parenting. We find NDIS to be an excellent system and we use a support worker with Community Care and some cleaning. I have my own health issues - Ischaemic Heart disease, P.T.S.D. from Ambulance work, and physical challenges due to Ambulance crashes. I have it a lot easier than others I have met, and I love my son utterly. His only problem behavior is that he can become fixated on an issue and it takes a lot of patience to talk him down. We raised him in a loving and nurturing environment. He was a delightful child and within the limits of his disability is a wonderful man. The personal grief I have is that I can never see him with normal standards of human development, but as far as I know, he is happy and healthy and achieving what he can.
*Name has been changed
I am caring for my mother who is a sufferer of Motor Neurone Disease. She is 83 years old and was diagnosed with this horrid disease in October 2017. Our world as we knew it was rocked.
She has symptoms of stroke, but had tremors in the lower jaw, tongue, and hands. Now she has progressed to no speech, no swallowing, fine motor skills in her hands are gone (can still give a killer hand shake though), and her legs are going. We have a hoist and sling, electric recliner, commode, and wheelchair for ease of dealing with lifting, and peg tube for feeding. She is now at what they call stage 3, but how many stages in MND is unknown. Mum has been surviving this disease for 1 year - she could go tomorrow, could go in 5 years, we don't know. We are just taking this disease one step, one day at a time.
I started caring when I was six years old of and have been doing it off and on for and I have looked after mum for 54 years. I have been caring full time for Mum for the last 12 years and the last year has been full on. Thank you for letting me tell our story.
I'm a full time unpaid carer for my partner of almost 13 years. She has aquired brain injury and a heart of gold. I care for her because I love her; it's as simple as that :)
I am currently caring for my wife who is suffering from Cognitive Frontal Lobe Dementia. She is very often confused, very forgetful and unable to manage financial matters and most household duties including meals and cleaning. My wife Lisa* is 72 and I am 70 years of age. I now have to undertake all duties around the house, such as shopping, cooking, some cleaning, manage the appointments and finances plus provide transport to anywhere that is required. We have been married for 44 years.
*Name has been changed
My wife, Rochelle, and I met online five years ago and it wasn’t long after that that she was going through treatment for breast cancer. Our friendship grew and soon we were talking offline, at this point it’s probably pertinent to say that I was living in Ireland and Rochelle in Adelaide. Fast forward to 2017 and I arrived to marry her. When you meet the love of your life you have to grab it and hold it tight. We were due marry on January 20th and but just before the day itself we were given the news that the cancer had returned and is terminal. We have now been married for almost nine months and while our time together is short it has been the most magical experience of my life. Why do I care? I care because this beautiful woman made me the man I am today and if I can do anything to make things easier for her then it is done. I see myself as a husband first and a carer second but without Carer Suport each would have been a struggle. Never be afraid to reach out and ask for help because in the words of Albus Dumbledore, "Help is always given at Hogwarts to those who ask for it.”
I care for my husband, Trevor, who has Lewy Body Dementia. This dementia is under the Parkinsons' umbrella. He got the dementia first and then Parkinson symptoms. He was diagnosed in 2015 but showed symptoms for at least 4 years before this. He is calm and reasonably happy, he enjoys his food and likes to sleep quite a bit. I had to retire from teaching to care for Trevor as he would forget to eat, drink and take his medication. I find the rigidity of the Parkinson's symptoms hard to manage at the moment. He needs help getting on and off the bed, help with dressing, showering etc. Trevor recently had a UTI and a couple of falls and now has a sore a back to add the mix. I do get some help and had a week respite, the first time for both of us. Family is good and grandchildren are a good distraction. It is hard to stay positive at times especially when health issues of my own creep in, that is why these support groups are so important. Above all, it is a privilege to care for someone.
I am 32 years old and I am a full time carer for my son who has ASD. Being a single parent for a child who is not only on the spectrum but has also been a victim of child abuse is difficult to say the least. Because of the ongoing and often trying issues I am unable to obtain paying work and I also don't have any form of social life. I was diagnosed with complex post traumatic stress disorder due to a bad childhood and the abuse that we suffered. He often gets sent home from school and has even been suspended and without any support, I have to be available when that happens. But, despite the stress, loneliness, isolation and fear of the future I am the carer for someone who is incredibly smart and caring. I don't think there isn't anyone he wouldn't help. He views the world so differently and even I get to learn new things from them. People always adore him because he's funny and interesting and he'd offer up a conversation to anyone. It's hard to admit that being a carer is difficult and that it taxes on your own mental health. Being a carer, especially unpaid is extremely hard for a lot of the time. We do the work that people would provide in home care or in hospitals but there is no paycheck. It takes a very patient and kind person to do what we do, someone who is willing to sacrifice and fill their diaries with appointments and meetings and be on call if things go pearshaped. I support carers because I am one. I know what it's like every single day. Carers need your support for their tireless efforts and love and time they give to those they are caring for.
I started caring for my husband, John, in 2011 when he was diagnosed with heart trouble, a melanoma and bowel cancer all at once. As a result of all the operations and trauma, John developed Alzheimer’s. I have to do the shopping, house work, pay the bills and make all the decisions for us. I had to learn how to budget, which John had always managed previously. I also check to make sure that John has dressed properly. I’m forever looking over my shoulder to make sure John is okay.
It's been difficult to see how John’s personality has changed. He gets angry and frustrated and it gets taken out on me. Our situation has in some ways restricted us from doing things we’d like to do. But we still make an effort to get out and do things, and enjoy life.It really helps me when I go on Carer Support outings and the weekend retreats. I also love the Campbelltown Carers group. I have a cleaner who comes in to help occasionally and that’s also a big help. Having a support network and people who understand is really powerful.
Knowing that Carer Support is there is wonderful. It’s been nice to meet others in the same position who don’t pass judgement.
I have looked after my mother who was over 80 years old. I too have adult autism but I still battled on. I have cared for my mother for 3 years without pay. I struggled with her medications and doing her shopping without using a car. I mostly walked everywhere. About two years ago, she went into Resthaven because I couldn't care for her no more. It was getting too much for me to handle. I'm getting older myself and also looking after my dad as well. Sometimes I get forgotten because I don't have much support from council and I don't have a laptop computer to use.
Why do we downplay our role as carers? Because we want our loved ones to have some dignity. I don’t want our close friends to know he can no longer go to the loo without help, that some days he shakes too much to feed himself, that some nights are a marathon of sweats and catheter leaks. I want them to see the kind, intelligent man that they’ve known for years. Our friends know he needs full time care, but I don’t want him diminished by the details.
*Name has been changed
I just want to say thank you to Carer Suport. I don't access a lot of the supports available, but as a full-time worker who cares for an ageing mother with 2 chronic illnesses and little family support, I really value and appreciate your respite program. It allows me to continue working and probably keeps me sane too. Such an invaluable part of your work for which I am very grateful.
*Name has been changed
I started to help caring for mum in 2009 when her injury happened. Because of mum’s neck and back injury she can’t lift more than 5kg so I mostly do what mum can’t do.I do lots of the house chores like the dishes, washing, taking out the bins and general cleaning around the house. Sometimes, I might have to take mum to the doctor’s if she’s in a lot of pain.
I’ve had some rough times and, since being with Carer Support, the rough times haven’t been as bad. I also wouldn’t have experienced going away on a retreat or going out to dinner – going to Grill’d with the young adult carers was a really fancy experience.
I care for my 16-year old son, Vince, who lives with Down syndrome, autism and severe intellectual disability.
Life with Vince has been a beautiful journey. Vince is a blessing and all the people who have come into our lives as a result have been a blessing. I’ve been able to find lots of support for Vince and my family, but you have to learn to put your hand up and say you need help. For kids like Vince, a whole team approach is needed and different people bring different knowledge and advice.
One of the biggest challenges with Vince has been my uncertainty over his future. His vulnerability worries me and I’ve had to build trust with people who can look after Vince, which has been a process. I’ve had to learn to let go so he’s teaching me lessons about life.
It’s beautiful to have an agency like Carer Support because they completely understand, and I feel so supported by them.
I care for my 29-year old son, Daniel, who has an intellectual and physical disability, and I also care for my parents.
I do almost everything for Daniel – from cooking and cleaning to helping him with dressing and showering. My parents need assistance with language translation, general transport and transport to appointments. You care for the people you love because you have to, but it gets more physically demanding caring for Daniel as I get older.
For carers, there’s rarely time to take time out or socialise with "normal" people. For this reason, I really value respite because it gives me the chance to relax and do my things.
Before Daniel turned 16, I’d never had any respite and so I never went anywhere. It was such a turning point to discover Carer Support and I would really struggle without their support because of the isolation.
D and I first met as teenagers in 1952 & soon fell in love. It was a joyful two years before we separated and eventually married others, but seeds of love remained buried in our hearts. We both were later to become carers for our spouses, when they suffered long terminal illnesses. In 2009 God brought us together again. After a whirlwind courtship of only 10 days, we agreed that we wanted to spend the rest of our lives together. We were now in our 70s, but active & healthy, and our married life could not have been happier. However, nearly three years ago clouds began gathering when D was diagnosed with frontal lobe dementia, and as this condition has deteriorated I have become her 24/7 carer. She now needs constant supervision and support, which is physically and emotionally draining, but we remain deeply in love, and I accept this role as being part of "in sickness and in health, till death parts us."
The nature of D's dementia is such that she has been robbed of her abilities to read, write and concentrate on TV viewing & music listening by herself. Thus she is deprived of so many meaningful experiences. However, she remains a warmly gregarious lady, such that she delights in attending, twice weekly, day respite at Southern Cross' Myrtle Cottage at Myrtlebank. One other day a social worker takes her on an outing for 2 hours, but how else to keep her happily occupied for the rest of each week? We go shopping together and even share medical consultations, go for drives in the Hills & occasional concerts, but there are inevitable times when I have to attend to chores & business, and D has nothing to do.
During these "barren" periods it would be great to have friends to visit, but sadly our invitations to visitors have been unfruitful. Is it that everyone today is frantically busy, or could it be that most people find it daunting to interact with a demented person. Maybe community awareness needs to be developed.
We are so grateful for the priceless support of many helpful organisations, of which Carer Support is a leader. So too is Myrtle Cottage, our local council, and the advice of Dementia Australia is invaluable. However it can be isolating being a home carer, especially as I am now in my late 80s, and find it most confronting having to deal with government authorities in this incomprehensible digital age. It would be wonderful if someone could guide me through the bureaucratic mazes, as I have very limited family support to call upon.
I sincerely thank Carer Support for its truly caring and ready support of us during these testing times. We could not survive without you and your fellow community organisations.
I'm a single parent in Adelaide. My family all live in NZ. My daughter came down with an exhausting flu the winter she turned 13 and never recovered from it. We were in ER multiple times frightened by the flood of symptoms that came and went or came and stayed. I dropped everything to care for her, nursing her through the sleepless painful night hours while I pored the internet for medical insight and support. By day I made countless appointments and drove us to specialists and therapists looking for relief and help. 4 months later we got the diagnosis of fibromyalgia. It was a relief firstly to know she wasn't dying and to come out of the intense crisis of just coping mode into the less powerless feeling of resolving this illness. Every time we trialled a new drug or attempted a suggested therapy it either didn't work or made her worse. All the while her symptoms snowballed and rendered her virtually bedridden, losing weight, missing school and losing all her friends. It was another year along and we were both sick, exhausted and depressed. I discussed with a psychologist how I had started to dream about my only child's teen years. Growing up, cutting the apron strings. A job, learning to drive, flatting. And dreams for me too. Going out evenings again. Time free to work a decent job. Maybe have a relationship, join a club. Those dreams were smashed. I felt trapped and tricked. Like a game of snakes and ladders she had slid right back to baby stage of needing me for everything. My time was not my own. She needed me to have hope and find answers and stand strong for her when I felt none of those things and all I wanted to do was run away and get another life. She's 16 now and it was about a year ago I made peace with our new normal. There is no cure. There's not even relief. What's come instead is acceptance, tolerance and gratitude for simple things like sleep and yummy food and fun movies and loving each other. The dreams and hopes we had and all the expectations and standards that measure them are nowhere near as precious to us now as the peace and wholeness of being there for each other and respecting each other in the new roles of parent/carer and chronically ill/teenager. Life is smaller and slower but it is ours and we make it work slowly and in little ways. I've just been accepted for carer's payment. I used to be desperate to get away from the demands of my daughter's sickness. Now I'm looking forward to more time to spend with her. We are going to visit her cousins in NZ next year and we are planning a little Aussie cruise in the future. Dreaming again. I'm hopeful that when it's time to leave my home, NDIS will be able to support her into independance.