The Journey

Hi there, we are Tim and Wendy and we both live with a disability, Tim’s disability. 

For 25 years, we have coped with the ever increasing limitations that multiple sclerosis has inflicted on Tim. Over the past 18 months, he has also endured a heart attack and a stroke. Already struggling with using a walker around the house, he has had to re-learn how to do this, how to understand and remember what people are saying and how to communicate his thoughts in a way that people will understand. It is all a work in progress.

As Tim’s needs have increased, we have had to allow more and more people into our lives to help us. This has not been an easy process, we like our own company and we have lived alone together for many years. Our daily lives are now filled with therapy appointments and personal carers who assist Tim with all aspects of his personal care. The carers are with us for the mornings on 6 days a week. Wendy manages the rest of the time. We look forward to Sundays, when we have the house to ourselves and no routine to adhere to.

As you may imagine, the relationship we have with the carers is very important to our well being. Over the last few years, we have had carers of all ages, with all levels of experience and training. It is most important to us that the carers get to know Tim and understand that his condition fluctuates daily. The assistance he requires varies from day to day but he is always at risk of falling. It is crucially important that the carers talk to Tim, this helps his expressive communication,  that they are patient if he is having a tired confused day, that they are respectful and understand that he might struggle with many aspects of daily life but he was once an academic, a manager of human services, a fisherman, a gardener, a carer himself. 

It is useful if the carers have had some experience with providing personal care. If that is not the case, or their experience is limited, they need to show a willingness to learn, to follow instructions, to comply with safety requirements. They need to be able to drive the van, to control the electric wheelchair. Carers need to be flexible, be willing and able to assist us with all aspects of support, all the things that Tim is now unable to do. This includes, laundry, cleaning, cooking, shopping, taking the van through the car wash, taking the dog for a walk….and to include Tim in these activities if he wishes so that he remains part of his community.

It is very difficult for both of us if the carers change frequently. It is not easy to have different people in your home every day. Even more difficult is when a carer with whom we have  established a good working relationship leaves because their visa conditions have been met or they have found a better job. We then have to start the process of familiarisation and training all over again. 

Finally, it is very important to us that the carers focus all their attention on Tim when they are with us. This includes no mobile phone use while on duty.