Mr A: Going Home on my Birthday

‘I want to go home on my birthday’, said Mr A. 

‘When is your birthday?’, I asked. 

‘30th Nov,’ he answered. 

 

With his goal clearly articulated, the first occupational therapy session with Mr A involved setting the steps to achieve his goal and discussion of what his expectations were for discharge. He was assisted for his BADLs by his helper and was largely bedbound during his hospital admission. He shared that his main goal when discharged was to be able to continue doing his podcast, which is something he was passionate about. As he was mainly homebound, his podcast was one of the only ways for him to access and contribute to his local community and socialize with people outside of his immediate family. After understanding more about Mr A and his life story, I came to understand how being able to record podcasts and to be active on his social media channels were the few main things that purpose and drives Mr A. With his declining physical body, he truly valued being able to share his experiences and be an ambassador for persons living with ALS. 

 

Before his admission, he would record his podcasts for approximately 10 minutes. However, due to his decline in functioning, he acknowledged that 3-minute recordings would be more achievable. To upload his podcasts, he had a team of editors and co-workers that could assist with this. Based on his setup at home, the most ideal method of completing these recordings was to be sitting out so he could properly access the mic. Therefore, the main goal during admission was figuring out how to transfer Mr A from bed into a sitting position to enable him to continue engaging in this occupation of making podcasts. He also identified that sitting out, and not spending all his time in bed, was something he valued. 

 

To achieve his overall goal, there were several steps involved. The first area I considered was the physical environment, and the facilitators and barriers it posed. Mr A was constantly connected to a ventilator, so positioning of the hoist, the ventilator and the wheelchair had to be considered carefully. His seating needs also had to be analysed; due to reduced neck control and overall motor functioning, a tilt-in-space wheelchair was used. Finally, storage and how to move the ventilator to allow Mr A to leave his room was also considered. All these different factors had to also be applied to his home environment, which meant that I had to liaise closely with the main spokesperson (sister-in-law), for discharge planning. 

 

When using the hoist to transfer Mr A at first, the main target we wanted to achieve was to increase his sitting tolerance to a stage where he could successfully and safely sit out for the time required to record his podcast. After only a few trials, Mr A was able to comfortably sit out for over 1 hour, which was enough time for him to record a podcast. After achieving this milestone, the focus shifted to ensure that his helper (Ms P) was competent in completing the hoist transfers. This was broken down into several steps; firstly Ms P practised hoisting with myself and another therapist, to become confident in the basic steps involved with the transfer. Then, practice was completed with Mr A, with the environment set up as similarly as possible to his home surroundings. In one session, Mr A’s father also participated in the transfer, as he would be the person assisting Ms P at home when transferring Mr A. In order to ensure that at home the transfers would be completed safely, resources such as video recordings and written instructions were also provided. While all this training was ongoing, I was communicating with Mr A’s spokesperson for necessary equipment and home environment adaptations to enable these transfers. His family were very supportive of Mr A’s goals and were quick to follow-up on all the recommendations provided (getting a tilt-in-space wheelchair with a bracket attached for the ventilator, a pressure relief cushion, practice of using hoist at home). Getting this equipment had been the final step to enable Mr A to complete recording of his podcast, and therefore facilitate participation an occupation he valued. 

 

Mr A was discharged home on 30th Nov, his birthday. A definite milestone and one of the first things he communicated to me and the whole team when we first met. I’m honoured to be part of Mr A’s journey and feel privileged to be able to prepare him and his family for participation in his life’s goals and purposes. As a quote from an ALS fighter expresses ‘We may lose our strength, but we will never lose our devotion and love’. May Mr A continue to lead a purpose driving and fulfilling life!