Goofing off with Adam
On last week’s episode of Speechless, the delicate relationship between caregiver and client was examined. When a caregiver provides care outside a facility, the professional lines can be tricky. I can relate my own caregiver relationships to that of JJ and Kenneth. Balancing personal and professional lives for both the caregiver and the client is in itself a challenge.
In this episode of Speechless, JJ wanted to go to a movie with friends, but Kenneth had plans, this led to an argument. JJ sarcastically remarked in hurt and anger, “I’m sorry I’m such a burden!” I can really relate to this. It is difficult to depend on others for care. There have been many times my mom has had to cancel plans because caregivers call in sick or don’t show up. I feel bad because my mom already does more than her share. She always tells me to never apologize, but I still feel bad and there are times I do feel like a burden. It is not a good feeling. I can understand why JJ reacted the way he did on this episode of Speechless. Sometimes it is easier to react in anger than admit the hurt that comes with these situations.
I am sometimes very frustrated when I have to rely on others for independence. From my standpoint, I can’t use the bathroom, brush my teeth, put on deodorant/ cologne, (tried that once and discovered it makes excellent mace!) get in/out of bed, or drive on my own. I’m at the mercy of my caregivers. I do hope that with enough technology and physical therapy that I could be more independent someday. However, today I rely on my caregivers for my care, social life and basically, my survival.
Attending the Woodchucks game with my friend, Daryl
In this episode of Speechless, Kenneth wanted JJ to understand that he had a life outside of his job. He wanted appreciation and respect for his time. My mom and I do not argue often, but this is an argument we have had several times. I want her to understand how difficult it is to rely on others and she wants time away to have a life of her own. It is a very difficult balance and the boundaries are sometimes so blurred and disagreements happen.
This challenge is not just limited to my mom, but to other caregivers I have gotten close to. I am their job, their rent money, car payment, etc. However, over time a friendship forms and that is when things get challenging. Just like Kenneth on Speechless, my caregivers have their own family, their own interest and friends. When does the caregiving stop and the friendship start? This is a question I have never had a clear answer for. There have been times when a caregiver refers to me as a friend, even family, and then left without notice. To them, I was simply a job they quit. To me, I was a friend who was left behind.
In this episode of Speechless, an agreement was finally reached. Kenneth gained an understanding that he was more than just a caregiver, he was a friend. JJ came to understand that Kenneth cared deeply for him, but he still had a life beyond providing cares for JJ. Kenneth expressed the delicate relationship between a caregiver and a client best when he stated that there needs to be a balance, he just does not know what that balance is supposed to be. I am still trying to figure out that balance. When is my mom a caregiver? When is she my mom? When is she my friend? Of course, I also have to figure this out with all my caregivers. Where is the boundary between being a caregiver and being a friend? When those boundaries are crossed, what is the game plan to getting back on track? Personally, I would rather sacrifice the caregiver relationship to save the friendship. Luckily, I have never had to make that decision. I have an incredible team of caregivers who are my friends. We have strived to find a balance that works for us.
By Allen Klein
One of the aspects of Speechless I love the most is the use of humor to get through the sticky situations. I think the real key to living with or adjusting to a disability is to have a sense of humor. Nothing drove that point home more than the scene in which the DiMeo family was sitting down for breakfast and JJ used a borrowed voice device, which was set to the voice of a little girl, to ask for cereal. It’s always important to sometimes poke fun at yourself when you’re disabled. I have that relationship with all of my caregivers, including my mom. We laugh at my deficits as well as their own. Outsiders may view our humor as inappropriate or unprofessional, but it is a great defense mechanism when times get tough.
You can watch Speechless every Wednesday at 8:30/7:30c on ABC. You can catch up on all the episodes anytime on Hulu.