When I was of college age, I was fortunate enough to attend a school that at the time offered a dormitory providing 24/7 care for those with disabilities. I was also fortunate enough to find a student who agreed to provide my care outside of that dormitory for my sophomore through senior years.
Thus began my education in how to manage caregivers. It is a rarely taught skill set because unless you have managed caregivers yourself, there are few parallels for comparison. Also, I find it hard to say that there are firm rules for managing caregivers.
Every person with a disability has a different personality, habits, and needs. Because of that, different caregivers are suitable for each person, requiring different management techniques.
Despite saying there are no firm rules to managing caregivers, there are habits that will help. As with all relationships, communication is important.
Communicating with caregivers
Proper communication begins during the interview process. In addition to the responsibilities of the job, the potential caregiver needs to get a feeling for you.
Talk about your interests, because they will most likely have to participate somehow in them. Give them a sense of your personality. I try to tell dad jokes because, in real life, I tell dad jokes.
It will be hard to open up to a stranger but try. In the same vein, try to get a feeling for their personality.
Ask about their interests. While a caregiver works for you, talk to them regularly about how the job is going. What could change for the better from both your perspective and the caregivers? Be open and honest.
Gut feelings when it comes to flexibility
In addition to communication, I find flexibility important. This is a tricky skill to learn because there is a fine line between being flexible and having someone walk all over you.
I wish I could firmly define the difference, but it honestly comes down to gut feel and the individual caregiver. One caregiver may be allowed certain liberties because you know that they will reciprocate or make up for it, while a different caregiver is not granted those same liberties, because they will not reciprocate or make up for it.
Different people will care for you in different ways
Additionally, you need to have some flexibility. Certain tasks do have to be completed a certain way, but many do not. Be willing to accept subtle differences in how different people care for you.
It may not be the “right” way, but does it accomplish the task without endangering you?
Hand in hand with flexibility is a degree of understanding your caregiver. A complaint from one caregiver does not necessarily carry the same weight as the same issue from a different one. This takes time to develop with each caregiver and with you individually.
Also, like flexibility, this needs to be carefully balanced to avoid being taken advantage of, as relationships with caregivers change over time.
Tips for parents to help children adjust to caregivers
If parents are reading this post, I would suggest finding trusted individuals to care for your children so they can learn how to deal with other people and their disability. Even if just for an afternoon.
The way treatments are evolving, we are becoming much more likely to live in adulthood and past the death of our parents.
What traits do you use to manage your caregiver? What do you find helpful?
Have you found something to help you mentally cope with SMA?