During a trip to the US, we were lucky enough to meet with several organisations and community members, including Kasey. We were impressed with how she had organised the care of her mother, Billy, who lives with Parkinson’s. We caught up with her to find out more about the technology she uses, how she has set up a system for Billy’s care, and what advice she would give to those who are keen to follow her example.
‘As independent as possible’
“I was looking for ways to keep them as independent as possible”, Kasey tells us from her home in Kansas. Billy, having lived with Parkinson’s for the past fifteen years, had to move in with Kasey nine months ago, along with her father, Larry, a former carpenter. Kasey was keen that they be able to maintain as much of their autonomy as possible. “I’m very keen on keeping [their] quality of life high”, she says, a desire that has motivated her to keep Billy’s care in an orderly state since they moved in. Having been a mother of 6, Billy was used to organising effective and compassionate care, and it was now Kasey’s time to return a mother’s kindness by looking after her.
Kasey is not new to the task of organisation, having run her own business in organising home spaces. Nevertheless, the task of looking after Billy brought about new and unexpected challenges, and Kasey had to engage in lengthy research to find out the best tools and techniques to ensure that Billy’s care was efficient, personal, and allowed for her to maintain the greatest independence possible; a key consideration for her parents, who had long been in charge of their lives.
Additionally, her parents are soon moving to an independent house, where Kasey will no longer be able to oversee their care in person full-time. “They have the incredibly fortunate circumstance of a private insurance policy that pays for private home nursing care, that my dad got about 20 years ago”, Kasey tells us, but she was determined to ensure that there was never confusion as to Billy’s routine, or any lapses or difficulties in her care.
‘I prefer to look for myself’
Kasey began to do extensive research into any device or gadget that could be of use. “I don’t really wait for someone to tell me about something”, she says; “I prefer to go looking for it myself”. Her determination paid off, as she found several gadgets that have helped Billy, from a walker that shines lights on the ground to aid with cueing, to a medicine case that sounds a gentle alarm whenever she is due to take medication.
One of Kasey’s favourite finds, however, is a button that alerts her whenever Billy has a fall; Kasey spent a long time trying to find just the right thing. Many of the devices she found automatically called an external service when the user fell, alerting local ambulances and a support team, but Kasey found that this wasn’t right for her. “Her speech is often poor, and I don’t know if they’re going to be able to communicate with her very well”. It was better for Billy that the button called Kasey, and her care team, to help keep everything streamlined and personal.
After a lengthy search, Kasey managed to find this perfect button: activated when Billy falls, it automatically calls Kasey or one of her carers, as well as sounding an alarm. This has given Kasey the ability to better tailor her care to Billy, making the transition back to living independently easier for both Kasey and her parents, providing peace of mind for all.
‘The spreadsheet queen’
All these gadgets can become quite expensive, but Kasey has also utilised spreadsheets and free apps to better organise Billy’s care. Kasey was in need of an app that allowed her and Billy’s carers to communicate, schedule appointments, and organise, but found that they were either too simple or based toward more corporate nursing.
After much searching, Kasey discovered VerifyCare, an app. “I love it, and all the caregivers love it. It lets us manage and track medications, vitals, appointments, their schedules, and leave notes of anything relevant”. Using the app has allowed her to stay in control of the care plan, whilst making it flexible and easy to pick up for anyone who might be caring for Billy that day.
She has also found that organising things into spreadsheets has been greatly useful; she proudly tells us that she’s “the spreadsheet queen”. Having run her own business, Kasey is an expert at keeping things ordered on spreadsheets, and using this method has meant she can keep track of all relevant information with great efficiency. “I’m sure there are other programs out there, but it’s what I’m familiar with… it’s about finding what’s right for you”.
‘Maintaining is easier than building’
There are, sadly, still issues with finding the right care for Billy, though Kasey tackles each with characteristic vigour. In particular, Kasey has found it hard to find a phone that’s perfect for Billy. “She loves to talk on the phone to her friends and family, but can’t use a smartphone with her tremor”. Kasey has tried one device that was designed for older people, but found that it was overly complicated to use, and was unsuitable for Billy. Never one to be deterred, Kasey tells us that she already has another phone in mind. “The buttons are big and they’re rubber… When you push the button, it talks back to you; if you press three, it says three, so it stops her dialling the wrong number”.
Kasey’s determination to find the best way to look after Billy has led her to develop an entire system, utilising a mixture of gadgets, apps, and old-fashioned spreadsheets to coordinate everything, giving Billy personal and appropriate care whilst maintaining her autonomy. We ask her what her advice is for others who may be wondering how best to set up their own care system; how can others follow her example?
“It takes a lot of time to get a system set up, and a lot of effort and research, and the system will always require maintenance. But once you have a system, making adjustments is very quick and you can get your hands on information with ease. Maintaining something is much easier than building it”. Now her system is so well established, it’s clear that Kasey will keep it highly maintained, benefiting everyone in her life.
Thank you to Kasey for talking to us, and for sharing her organisational wisdom. To find out more about how to care for a loved one with Parkinson’s, please follow this link.