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Tip for Caregivers During Hospital Stays


TIP
One of Mathew’s nurses suggested we get a notebook that we keep with Mathew/in his room. So notes can be taken, questions added for asking the doctor and any other observations or instructions. This was important since the people who took turns staying with Mathew changed during the day. The notebook is an invaluable tip.


One of the ways we utilized this immediately was to list any questions we parents had. Mathew didn’t want us to ask the doctors anything until he was through talking to them. He was 24 at the time and an intelligent adult, and it was his decision, but as a Mom, it was also difficult to stay quiet that long! 

Now is a good time to explain that Mathew was only a few months (maybe) from death at the time of his hospital admission. The tumor itself, (as was explained to us later at Moffitt), excreted toxins. Mathew suffered from hepatic buildup, which also caused his liver to be toxic, which caused Mathew to suffer from hallucinations and mental confusion. I can’t imagine how he did as well as he did. He took notes in his journal, asked the right questions, and expressed his wishes well.

At this point, he, (as did the rest of us,) thought that the situation was temporary and he would get through it relatively quickly. He didn’t want a lot of visitors, people coming in and seeing how sick he looked because, after his admission, he deteriorated rapidly. When he went to the ER, he wore jeans, a pullover, and sneakers. Within days he suffered from fluid retention so severely he could hardly walk and couldn’t wear shoes.


Here is a picture of the back of his legs. Remember they were not this swollen just days before at his admission though they were larger than usual.


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