This is my first post, and today has been quite a busy one. (Sorry in advance for my poor English, after all it is my second language.)
Being a 24/7 nurse and caregiver for a young adult with multiple chronic illnesses, including a progressive terminal illness, is quite difficult but also very rewarding. I wouldn’t trade it for anything. I became his caregiver when my husband and I left Tokyo to live in the U.S. We work as a caregiving team–my husband helps him with physical therapy when I’m not available. Most of the time I do physical therapy with him along with the advanced care that my patient needs such as feedings through his feeding tube, IV infusions, breathing treatments with his oxygen concentrator as needed, at-night suctioning, and so much more.
My husband and I don’t have children of our own, but we consider him part of the family and the closest thing we will have to our own. I’ve been caring for him for three years now, and I moved to the U.S. a year before I started caring for him. I used to be a nurse at a really good hospital in Japan, so believe me when I say I have my experiences.
Today was quite busy because I had to suction him, change his low-profile feeding tube button, and change the IV in his port. Today was the second time getting his feeding tube changed and the first time I did it for him specifically. I changed a couple of feeding tubes back in Japan, and my patients told me that the feeling is not the most pleasant thing in the world. My current patient told me and my husband that he really didn’t want to go through with the feeding and cleaning, but we were able to convince him that it needs to be done for his own health and he understood. I honestly don’t blame him for not wanting to get all this done–especially when it came to getting his feeding tube changed and getting suctioned. To try and calm his fears, my husband and I gave him a present for his 25th birthday. We got him a traditional Japanese koto which is a really beautiful musical instrument. I actually used to give him lessons with mine, and he did wonderful with it even though it is a difficult instrument. But the strings got worn down, and I just haven’t had time to fix them.
My husband spent the morning helping him set up his koto and also working with him on his Japanese. He is great at speaking Japanese, and he only makes about one or two mistakes whenever he’s having a full-on conversation in Japanese. He likes to work on it every day so that he doesn’t get rusty on the language.
Around 10 today, it came time for me to do everything that needed to be done. Of course he was a little nervous, so while I was getting all the supplies ready my husband helped him get comfortable by lying him down and playing some relaxing, traditional Japanese music. While I was changing his IV and his feeding tube, they both sang along to the music my husband played. As I was suctioning the tube–he couldn’t sing at this time due to the tube going down his nose and mouth that clears all the stuff that’s in his lungs–my husband and I sang him a very pretty Japanese song that I grew up with.
After we finished all of his care and procedures and I got him on his oxygen, the suctioning made him feel out of breath. I gave him a traditional, relaxing Japanese massage to help his muscles relax. Right now, he is sleeping with his IV going and his oxygen, and I’m getting ready to give him his second gravity feeding.