Update on Visiting James
I know that everyone would like to visit James but I am now having reservations, beyond the logistical sort!
I consulted with his doctor this morning about a visitor schedule and of course, the first thing she asked me was, "What does James want to do?"
When I asked James if he wanted visitors he told me "no." I ask him on a daily basis now, to check in, and it is the one question he will not answer. I do not know if this is due to the ataxia or if he truly does not want to have visitors and refuses to answer the question.
He enjoyed his visit with Charles and Paul the other night but he has no memory of the visitors at Bellevue at all.
James was wide-eyed to learn that his brothers, pregnant (!) sister-in-law, Robert and my mother were all here. He had no memory or knowledge of their visit which is to be expected.
James cannot tell time nor understand how a clock works. It takes him several minutes to name five vegetables. It is a struggle and effort to move his left arm repeatedly to his stomach and then to the therapist's hand at his side--he's tired and frustrated. In other words, every minute of James's waking life is now therapy.
I understand and sympathize that friends want to visit with James. I think we should wait until James agrees to visitors. Deb, the wonder woman behind the GoFundMe site, has suggested a free, online scheduling site. I think that's a great idea. We will set it up and then, when James gives me the thumbs up, I will post the link to the site and it will go live.
I would also like to request that no one take photographs of James in the hospital, especially not selfies. He cannot give consent to having his photo taken. I hope this does not insult anyone but in the social media world we all share, people have a wide spectrum of what is acceptable behavior for themselves. I ask that you respect my idea of privacy at this time. James was very public with his own personal life and a Facebook poster. We often disagreed on what was appropriate to share on that site. James and I did agree that medical situations and true personal matters should not be posted on social media.
Thank you all for your understanding. I know you all want to express your love and support for James. He needs all of you in his life. I do not want to restrict anyone from expressing their love for him. I want to keep his rehabilitation and welfare at the forefront and his needs have to come first. It has been difficult for me to navigate this aspect of his recovery because I truly do not know his mental capacity at this time and how he will react to visitors that he may not recognize. I do not know if visitors will benefit or harm him, that is the simple way of saying it and I am in no position to judge. I look toward the guidance of the doctors and therapists as they have the experience and understanding. I have only my instinctive protection of James to guide me.
I consulted with his doctor this morning about a visitor schedule and of course, the first thing she asked me was, "What does James want to do?"
When I asked James if he wanted visitors he told me "no." I ask him on a daily basis now, to check in, and it is the one question he will not answer. I do not know if this is due to the ataxia or if he truly does not want to have visitors and refuses to answer the question.
He enjoyed his visit with Charles and Paul the other night but he has no memory of the visitors at Bellevue at all.
James was wide-eyed to learn that his brothers, pregnant (!) sister-in-law, Robert and my mother were all here. He had no memory or knowledge of their visit which is to be expected.
James cannot tell time nor understand how a clock works. It takes him several minutes to name five vegetables. It is a struggle and effort to move his left arm repeatedly to his stomach and then to the therapist's hand at his side--he's tired and frustrated. In other words, every minute of James's waking life is now therapy.
I understand and sympathize that friends want to visit with James. I think we should wait until James agrees to visitors. Deb, the wonder woman behind the GoFundMe site, has suggested a free, online scheduling site. I think that's a great idea. We will set it up and then, when James gives me the thumbs up, I will post the link to the site and it will go live.
I would also like to request that no one take photographs of James in the hospital, especially not selfies. He cannot give consent to having his photo taken. I hope this does not insult anyone but in the social media world we all share, people have a wide spectrum of what is acceptable behavior for themselves. I ask that you respect my idea of privacy at this time. James was very public with his own personal life and a Facebook poster. We often disagreed on what was appropriate to share on that site. James and I did agree that medical situations and true personal matters should not be posted on social media.
Thank you all for your understanding. I know you all want to express your love and support for James. He needs all of you in his life. I do not want to restrict anyone from expressing their love for him. I want to keep his rehabilitation and welfare at the forefront and his needs have to come first. It has been difficult for me to navigate this aspect of his recovery because I truly do not know his mental capacity at this time and how he will react to visitors that he may not recognize. I do not know if visitors will benefit or harm him, that is the simple way of saying it and I am in no position to judge. I look toward the guidance of the doctors and therapists as they have the experience and understanding. I have only my instinctive protection of James to guide me.
Jennie, you are doing all you can keeping everyone in the loop and everything you say here makes perfect sense! James is incredibly vulnerable right now and the only visitor he needs at the moment is you! We think of you 3 everyday.
ReplyDeleteDitto to what Kirsten just said.
ReplyDeleteTotally understandable. You need to go at his pace. We are all here when you are ready for us.
ReplyDeleteLove you guys.
-Heidi
Your instinct was a absolutely right. You are doing a remarkable job of caring for Jim. Perhaps he would just enjoy fan mail! I hope you can find little moments of rest in between. Xxoo D
ReplyDeleteJennie, we are all standing with you and James! We only want the best for your family and will show up in the ways that YOU want! The online scheduler is such an excellent idea - if and when James decides that more people is more fun. We love you!
ReplyDelete