Friday, June 29, 2012

Dementia is Evil and Other Ramblings...

wow....that last post was... 11 months ago. So much for keeping up with the blog. fail.

So, since I last blogged (really not expecting that anyone READS this blog...), I have lost more weight- down about 58 pounds total. Just a bit under my goal total and I am very content with that. At this point, no longer dieting- just living, and I am fine with that.

As for the rest of me, there really is more to me than my weight- honest!! I have Sjogren's Syndrome. If you don't know, and I assume most people don't know... Sjogren's Syndrome is an autoimmune disorder that causes various issues such as dryness of the eyes, mouth and other places we won't discuss... along with joint pain, fatigue and just feeling overall crappy some days. Not the end of the world, some days are worse than others and there is no cure- but it is what it goes on.

I have also tested positive for VonWillibrand's, which is a bleeding disorder. This one I have probably had my whole life but was never detected until recently. is what it is...I need to be aware of it and let doctors know if I need surgery or have an injury- otherwise, I bruise very easily and look like someone beats me (family joke, my husband thinks he's going to get arrested one day- not a chance!!) It is hereditary, so the kids need to be aware- one has tested negative so far, but will likely keep an eye out as well as on her kids. I feel bad to have possibly shared this with them... :-(

This post is sounding really really whiny....I don't mean it to, just putting it all out there. hey- you can stop reading (no one reads this stuff...what am I saying??)

Lastly, we have had some tragedy in the family.... this one is tough.

My sister ended her life on May 23rd. She did it peacefully, that I am glad for I suppose. I am sorry that she felt that was the only possible outcome for her life. It's a shame she couldn't see (maybe she did??) all of the beautiful tributes to her at her funeral, she was truly loved, for who she was- and that is all I think she ever really wanted. I think of her every day.

I had to tell our parents about her death. My mom is in good mind and body and was confused at first- who expects to hear something like that? NO ONE!

My dad has pretty severe dementia. I wasn't sure whether to tell him at all- would he understand? Would he know who I was talking about?

I talked to the nursing home, trying to get them to tell me what to do- of course, they can't tell you what to do. They did help me talk through it though and I decided that I would tell him only if he recognized me when I walked in to see him. You see, this isn't always the case. Months and months have gone by where my dad hasn't seemed to know who I was. Dementia is an evil thing.

The day of the funeral, I decided to go to see him and have 'the talk'. I walked in and he was sitting up in his wheelchair in the common area with the other residents. I greeted him "Hi Daddy!". His face brightened up and he said "Hello!" We chatted for a bit, but I still wasn't sure. Soon his favorite nurse came by- "Gwen! My daughter Merri-Lee came to see me today!". That was it- my cue. Today would be the day. I would tell him about my sister's passing, but only tell him once. If he forgot, I would never tell him again.

We chatted for a while longer in the common area and then I walked him up to his room, closed the door and explained that we had some bad news about my sister- she had passed away. There was quick recognition that this was bad- he understood. For that brief moment, he was there with me and he got it. I had photos with me for the funeral and we spent some time looking at them, reminiscing.

After a few minutes, he started to lose his words- a sign that his mental status was slipping. I knew that our time 'together' was ending. He struggled to speak the words he really meant to say, but they wouldn't form for him anymore. I distracted him with other things to ease his mind- he didn't need to work that hard.

He was very tired, I asked the nurses to help him to bed. He had enough that day.

He has never mentioned it to me or any of the staff, as far as anyone knows- I think that is a blessing- I hope he forgot.

I know I would like to.