Kacey’s Story

My daughter Kasey is 22 and was born with Microcephaly and Cerebral Palsy. She is not able to talk, feed herself, or walk so has a wheelchair and therefore needs fulltime care.

I remember the day I met Helen and Cathy. A Family support worker from IHC had talked to them about my family and how we were hoping for some regular shared care for Kasey. One fine Saturday we went out to their house to meet them. Kasey was 6 years old. We sat outside in the sun and the support worker talked about how Kasey was always dressed so lovely and wasn’t she cute. Little did they know that she could also have days when she grizzled all day which could really test your patience!

I was impressed by the fact that they had everything set up in their home, from an appropriate bed that Kasey wouldn’t fall out of, to clothes that she could wear when she was there and toys that were similar to the ones she had at home and were developmentally appropriate for her. Their house was wheelchair friendly with a ramp outside and now they also have an internal lift.

Helen arranged to come to my home to see Kasey being fed and to see how things were set up for her. Kasey was very difficult to feed and only a few people were able to feed her given the certain way she would let you do it. There were certain things that would make her resist eating and drinking and it was important that whoever was feeding her wouldn’t undo all the hard work that had gone into making eating a good experience for her. It had taken years of coaxing to get her to eat.

Having Helen come a few times to do this gave me the confidence I needed for her to care for Kasey at her house. I was able to tell her about all the things that were important to Kasey, such as all the routines for her personal care, medication that she needed, how she was entertained, but most of all the eating and drinking.

Kasey did not have her gastrostomy when she first went to KaraHands, and she could only drink from a bottle. She had to be coaxed into drinking every bottle – holding her in a certain position and being really persistent. If she didn’t get enough to drink, she would get dehydrated and end up in hospital, especially if she had a cold or was feeling unwell, she would refuse to eat or drink and so just getting Kasey to do either took up a huge part of the day. You would only just get one mealtime out of the way, or one bottle and it would be time for the next. Perseverance was so important as Kasey would be disinterested most of the time and for most people it was easy to give up and think she wasn’t hungry or thirsty.

Along with the feeding difficulties, Kasey was not very happy. She would grizzle a lot and sometimes this would be very high pitched and go on for a long time. Nothing seemed to work and even school would send home notes saying, “grizzled all day”. Kasey had two younger siblings, so life was very stressful, and I desperately craved for regular breaks but did not want to compromise Kasey’s care and I was very concerned about her getting the best of care if she went away somewhere.

Because of Helen and Cathy’s nursing experience they were familiar with a lot of Kasey’s needs, and they also had experience of looking after other young children who had high and complex medical needs. Kasey has Epilepsy and I was terrified that she would have a seizure which wouldn’t’ be noticed. I had a lot of anxiety around her health and wanted her to have the best care which included during the night, if necessary, as Kasey would wake up now and then uncovered or unhappy.

It soon became part of our lives with Kasey going to KaraHands and although initially I phoned them regularly when she was there, it didn’t take long for me to trust that she would be ok in their care. It meant I could also do other things with Kasey’s younger brother and sister and before long I had no worries about her during the time she was there. Helen and Cathy knew her so well and I had every confidence that she would be well looked after. She initially went for regular weekends then started going there during the week as well and the taxi would pick her up after school and take her out to their house. Because they had everything Kasey needed, I did not need to pack a bag for her which made life so much easier and was one less thing that would normally take some time if she was going anywhere else. Life was so busy then and things like this made a big difference.

As well as having regular breaks to look forward to without compromising Kasey’s care and wellbeing, I also shared many things along the way with Helen and Cathy. They soon became like my big sisters, and they were always there when I needed someone. They understood how difficult it could be through the hard times when Kasey was so unhappy. Kasey is a lot happier now, but we often talk about those dark times that really tested us all.

There are some significant things that stand out such as when my mother died suddenly. Helen and Cathy were immediately there to care for Kasey which was the best thing for me at the time as well as my other children who were grieving.

Kasey regularly spent time at KaraHands until she was 21 and moved into her own home with her flatmates. Helen and Cathy still have contact with her now and often come to see her bringing some of her special friends with them. Kasey made many friends during her time spent at KaraHands and who are still friends now.

I believe in my heart that I would not have coped without the regular breaks from the busy routine with Kasey. To know that she was well cared for and loved made it possible for me to share her with them. Their friendship also kept me going through some of the times when I have really struggled, and we remain friends even though Kasey has left home.