Paranoia

You haven’t done anything wrong or insensitive, Jose. I just remember that in the “early” stages of Sue’s illness I wanted to know everything, in the middle stages I felt more sensitive and didn’t wish to read certain sections of the discussion boards and towards the end I was scared of learning anything which might show me her time was imminent and I avoided sensitive threads. It’s not that these comments should not be written – they really must be aired and these boards are definitely the place to air them – but, as Gavin said, everyone has different needs and wishes and, if I’m writing something I think I may have wished to avoid at an earlier stage of my sister’s cc journey, I’ll put up a “warning” to alert others.

I hope that helps. Please keep telling us everything you wish or need to. We’re all here for you and I hope my experience helps you cope, just as your experiences are helping me realise it was the disease which was messing with my sister’s personality and that she was still the same loving sister who’d always supported and loved me.

Jxx

Jose,

It’s not a rule that we have here or anything formal like that, it’s just something that many of us like to do when we post something of a sensitive nature. Please do NOT think that you can’t keep posting stuff or anything like that. We are all here for each other and we are all most certainly here to help you and your sister rigtht now. So please, keep on posting as much as you want to. I just wanted to try and answer your question as to why some people use Sensitive in their postings. Keep posting and know that we are all here for you.

Best wishes,

Gavin

Jose,

Julia and others may put the word “sensitive” in front of a post or thread that they reply to or start for the simple reason that they feel that it contains sensitive information. This could be information of a sensitive nature that some people may not wish to read or hear about, such as details about the passing of a loved one, what they went through and information that some people may not want to know about. By putting “Sensitive” in the thread/post header, then the reader has the choice whether or not they want to read the post knowing that it contains sensitive information that may offend or hurt them by reading it. Some people want to know certain information or read about experiences and some people don’t want to. By putting Sensitive in posts or threads then the reader can make the choice whether he/she wants to read that post/thread or not. I hope that helps.

My best wishes to you,

Gavin

SENSITIVE

I can’t really remember when it started, Jose, but with Susan, it became much more noticeable during her last week.

I hope the doctors take control soon, your family needs its energy to support Carmen and each other and should not be having to deal with this on your own.

Jxx

My sister didn’t want to lie down, or even to sit down, either. She kept saying that she’d fall asleep if she sat down and she didn’t want to do that.

Senstitive:

Jose, the confusion was the last month or so before he passed. We had some close calls with him falling. He would get up and wonder around very unsteady. You have to be on guard and jump up the minute you hear something. The last few weeks I stayed in the room by his bed day and night. Agitation was probably the last week or so of his life. We really medicated him at that point. Every person is different. There are many helpful articles on the Internet that help with knowing the process of death. You can do this! And you will feel so blessed to be a part of it. I’m praying for you!

Jose, My heart breaks that your sister is suffering through this ordeal. My dad had a lot of confusion/agitation toward the end from high ammonia levels. I know this decline is devestating to watch as a care giver. You are doing a wonderful job. I would make sure she is as comfortable as possible and give her medication around the clock. She is at a high risk of falling if she is able to get out of bed so watch her closely. I’m praying for strength for your family.