Getting Help with Personal Care
Hiring an aide to get Darren up in the morning was a huge help, even though the first few aides were not able to assist with his bowel program. I still had to be in the house and available to take care of that part of his personal care routine. It was a difficult transition to make – to have someone else help Darren, but in the long run it was a lifesaver. It freed up my time, but more importantly, gave Darren authority over his own care. It was up to him to explain what needed to be done, how to do it and what he wanted. Having an aide, rather than his mother, assist him required him to clearly state his needs, sometimes explaining the “why” of it as well. None of the aides Darren worked with early on had experience with SCI, so a lot of education needed to take place.
Over time, Darren was able to do more and more for himself. On a daily basis, though, he made choices – have help or do it himself. Having help in the morning kept the routine to a minimum, both in terms of time and energy. It would be quicker and conserve energy for his day if he had help. He makes those decisions now as well, having help on the days he does his bowel program and shower; doing it himself if he is traveling or on the weekends when he has more time. The demands of his schedule: college, graduate and employment determined the amount of help he used, to some degree. If he is able to conserve energy for his day and activities, having help in the morning is a big benefit.
While navigating the system of insurance and benefits can be overwhelming and frustrating, the results of advocating for yourself or your loved one cannot be ignored. Hiring and keeping good help is expensive, but will be worth it. If you are entitled to medical benefits to cover it, make sure to be diligent in securing those benefits. The positive effects of not doing it all yourself will be evident in family dynamics (which I will write about in a separate section), your own health and even your positive outlook. You need time away from your loved one, and when you are able to do that, everyone will be happier and have a better state of mind.