Throughout my childhood, my CP affected me in such a way that I needed caregiver assistance or supervision 24 hours a day, seven days a week. This situation was – the most part – find with me until I reached my teens. It's a nauseating experience, if you will, to know the even though you are in high school and are old enough to have a boyfriend, you still have to be followed into a restroom. And, I don't know if you've ever tasted public wall before, but it's definitely not sautéed shrimp. I've always hated those moments when I have purposely squish my face into the tile squares of the girls' stall just so I can stay upright and pull up my pants without letting go of the only available grab bar.
It's a very difficult thing to face, and there were times that I was embarrassed to ask for help because I didn't want others to notice. I wanted people to think that I could do it all on my own. Trouble was, I was also suffering from convulsive panic attacks. I started to have them around the time I was transitioning to a new school, and trying to accept that I wouldn't see my former aids again.
The attacks would leave me so disoriented and exhausted that I could be non verbal for up to 2 hours. During the attacks, it was hard to communicate and was very frustrating at first for my new aids to know how to best help me, hence the rule that they had to be with me at all times for safety. Because they were around me so much, it was easy to feel like my privacy was being unintentionally invaded. They heard everything I said, saw everything I did and some even would pipe in their two cents about something that did not concern them. When this happened, I would often feel out of control.
I had to learn very quickly how to get my needs known without being offending or coming across as being egotistical. I always had a deep respect for my teachers' authority, but when I felt like I was being controlled, it was incredibly difficult to speak up myself. My Junior Year taught me a lot. I learned that frankly, "if you want something done right, do it yourself." In my case, this meant that I am the only one ultimately in control of myself and the life I lead; other people can only do so much.
I have had incredible bonds with a majority of my caregivers and aids, and have maintained my friendship with them even after they were no longer working with me. I know exactly who I would reccomend for someone in a similar situation, and what qualities I want when hiring my own staff. Here are 5 of the most important steps, that I feel will always yield memorable and fruitful teamwork. Even in not so ideal relationships, I have been able to apply these steps to my own perspective to help me personally keep positive and stay grateful for what services someone gave me.
MY TIPS FOR WORKING WITH CAREGIVERS AND WHY:
1.) Become close friends - everyone, no matter who they are, work better with people they know than people they don't. Especially in the case with caregivers, you will be working with your aids on a very intimate level, and maybe all the time, and so by becoming close, the trust between you can be strengthened and it will feel less awkward on your part, and less of a job on theirs if your bond is tight and cherished.
2.) Know boundaries - always know what the exact job of your caregiver is. In my case, it was simply as a physical assistant, so your caregiver should know when to assist and how. If they are there strictly for physical aid, make it just that. Once you establish a close enough bond, you might feel more comfortable including them in other non-related things, which can also be a blessing, as it would help them feel more appreciated.
2.) Code talk - code is beautiful. It allows you to communicate with your aid discretely, so as not to draw too much unnecessary attention to you, which can be stressful and sometimes embarrassing if it's a very personal matter. Some signals I've used:
Bathroom: American Sign for "toilet"
Panic Attack: power button on wheelchair
Menstrual Issue: simply, "sanitation"
Need Space: Caregiver will literally step back and put "surrender" hands up for a moment if it is clear I am feeling overwhelmed by their care. When I'm relaxed, I nod and then my caregiver proceeds as usual
Feeding Difficulty: American Sign for "I'm hungry" or sign for "water" if I am thirsty
3.) Be Clear - the way you communicate has the most impact on the bond you will establish with your caregiver. Be confident, polite and straight to the point. Be appreciative of their aid.
4.) Prepare, Anticipate - it's always easier to work as a team if you know what to expect. Whenever possible, try to inform your caregiver of what you will need in advance (ex: books, notes taken, water bottle). Also, it is equally important to anticipate. There will be times when you and your caregiver will not do as the other expected and this can strain your bond for a bit. Come up with a "Just In Case" plan to ease the potential tension. In personal experiences, I've encountered miscommunication especially during my attacks, and so I created an info card on which I list DOs and DON'Ts as well as medical information so my team is on the same page and can better care for me and support me.
5.) Be Appreciative - always try to show your gratitude. This will help your caregiver know that they are doing what you want and being what you need in the most effective way. Even if you personally hire them, be grateful.
Working with your caregivers shouldn't be like pushing a 32-ton train alone. Working together will help strengthen your bond and get things done that are thought to be impossible to conquer.
It's a very difficult thing to face, and there were times that I was embarrassed to ask for help because I didn't want others to notice. I wanted people to think that I could do it all on my own. Trouble was, I was also suffering from convulsive panic attacks. I started to have them around the time I was transitioning to a new school, and trying to accept that I wouldn't see my former aids again.
The attacks would leave me so disoriented and exhausted that I could be non verbal for up to 2 hours. During the attacks, it was hard to communicate and was very frustrating at first for my new aids to know how to best help me, hence the rule that they had to be with me at all times for safety. Because they were around me so much, it was easy to feel like my privacy was being unintentionally invaded. They heard everything I said, saw everything I did and some even would pipe in their two cents about something that did not concern them. When this happened, I would often feel out of control.
I had to learn very quickly how to get my needs known without being offending or coming across as being egotistical. I always had a deep respect for my teachers' authority, but when I felt like I was being controlled, it was incredibly difficult to speak up myself. My Junior Year taught me a lot. I learned that frankly, "if you want something done right, do it yourself." In my case, this meant that I am the only one ultimately in control of myself and the life I lead; other people can only do so much.
I have had incredible bonds with a majority of my caregivers and aids, and have maintained my friendship with them even after they were no longer working with me. I know exactly who I would reccomend for someone in a similar situation, and what qualities I want when hiring my own staff. Here are 5 of the most important steps, that I feel will always yield memorable and fruitful teamwork. Even in not so ideal relationships, I have been able to apply these steps to my own perspective to help me personally keep positive and stay grateful for what services someone gave me.
MY TIPS FOR WORKING WITH CAREGIVERS AND WHY:
1.) Become close friends - everyone, no matter who they are, work better with people they know than people they don't. Especially in the case with caregivers, you will be working with your aids on a very intimate level, and maybe all the time, and so by becoming close, the trust between you can be strengthened and it will feel less awkward on your part, and less of a job on theirs if your bond is tight and cherished.
2.) Know boundaries - always know what the exact job of your caregiver is. In my case, it was simply as a physical assistant, so your caregiver should know when to assist and how. If they are there strictly for physical aid, make it just that. Once you establish a close enough bond, you might feel more comfortable including them in other non-related things, which can also be a blessing, as it would help them feel more appreciated.
2.) Code talk - code is beautiful. It allows you to communicate with your aid discretely, so as not to draw too much unnecessary attention to you, which can be stressful and sometimes embarrassing if it's a very personal matter. Some signals I've used:
Bathroom: American Sign for "toilet"
Panic Attack: power button on wheelchair
Menstrual Issue: simply, "sanitation"
Need Space: Caregiver will literally step back and put "surrender" hands up for a moment if it is clear I am feeling overwhelmed by their care. When I'm relaxed, I nod and then my caregiver proceeds as usual
Feeding Difficulty: American Sign for "I'm hungry" or sign for "water" if I am thirsty
3.) Be Clear - the way you communicate has the most impact on the bond you will establish with your caregiver. Be confident, polite and straight to the point. Be appreciative of their aid.
4.) Prepare, Anticipate - it's always easier to work as a team if you know what to expect. Whenever possible, try to inform your caregiver of what you will need in advance (ex: books, notes taken, water bottle). Also, it is equally important to anticipate. There will be times when you and your caregiver will not do as the other expected and this can strain your bond for a bit. Come up with a "Just In Case" plan to ease the potential tension. In personal experiences, I've encountered miscommunication especially during my attacks, and so I created an info card on which I list DOs and DON'Ts as well as medical information so my team is on the same page and can better care for me and support me.
5.) Be Appreciative - always try to show your gratitude. This will help your caregiver know that they are doing what you want and being what you need in the most effective way. Even if you personally hire them, be grateful.
Working with your caregivers shouldn't be like pushing a 32-ton train alone. Working together will help strengthen your bond and get things done that are thought to be impossible to conquer.