I apologize for the delay in updates. I was having computer issues, but I think they are resolved for the time being.
Bear has been having pains in his legs lately. We are not entirely sure why there is pain. It may be caused by the blood clots, it may be caused by nerve damage due to compression of the spinal cord. It is uncertain at this point. It sounds like the doctors want to monitor it a couple days and if it doesn't go away then they will hopefully be doing some testing.
He has also had some stomach/abdominal pain but that seems to have resolved itself a bit. The doctors have increased his medication for pain.
While he has been sitting in his chair on at least a couple hours every day, he is still reluctant to even leave the floor. He is terrified of something happening to him and not getting help immediately. When I asked him what he is worried will happen, he includes things like falling out of his chair and not being able to get back in.
Because of his fear of further pain and problems arising, he does not want me to find out if he can have a pass out of the hospital to go to the candlelight ceremony that we have been going to for the last 2 years in honor of our daughter. It is on Friday. I really would like to go but I do not know if I want to go without him. I am not ready to live the life of a widow when my husband is still alive.
Some days, I go to visit him and I don't even know what to talk about anymore. How can we enjoy our time together, however much time we have left? How can we create some happy memories for these last weeks ?
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4 comments:
I know I say the same thing every time I leave a comment, but I am at a loss for words. I've never been in a situation like this and I wish you didn't have to be. I'm so sorry he may not make it to the candlelight ceremony. I love you and my heart hurts so badly for the pain and emotional torture you are both going through. You are both thought of every day by many, hopefully that helps in some small way.
Are there games you two enjoy?
Books you like to read?
Movies to watch?
Try to find things to do together that won't continually remind you of the fact that he is dying. Just some ideas. I have never been in your shoes, but this is something I think I would try to do.
Praying for you.
Mlpinky from Ontario
my heart breaks for you. Perhaps you and Bryan could light a candle together for Tyla on Friday, download a couple of nice songs to listen to and make your own service.
If there's one thing I remember, it's that hospitals are boring. And when you run out of things to talk about, they are mind numbingly boring. Maybe try bringing in a deck of cards or a new board game every few days to play - something to let you both stop thinking for a little bit. Or bring in your photo albums to look through together - or bring in loose pictures to scrapbook together - That might be very difficult emotionally though I suppose. finger paints to paint a picture together?
I've never been in your situation, so perhaps my suggestions are off base, but I think the "together" is the most important part, however you choose to spend the time. As always my thoughts are with you both.
Ter, So sorry that B is having such issues with pain and fear. It cannot be an easy thing to deal with, and I, too, am so sorry that you are both going through this.
As for ideas on how to make your time together memorable.... I like Mlpinky's ideas plus:
have a romantic candlelight dinner for two... pretend you're on your first date
Play obnoxious word games that will make you laugh (those Mad Lib booklets can be pretty hilarious).
Make a recipe book together of Bears Favorite Foods :)
Think of some "conversation starters" and make up cards, then draw the cards out of a box (or whatever you put them in) and have a conversation about those things. They can be as simple as "What is a favorite childhood memory?" or as complex as "If you could go anywhere in the world tomorrow, and money was no object, where would you go, what would you do, who would you take with you?" I have some good ones that Mike and I got from a seminar we did at our church... I'll see if I can find them and I'll email them to you :)
Bring in some pics of Emma that he hasn't seen and make up funny stories about them.
Paint your fingernails all different colors and see how long it takes him to notice/ say something about it.
Give him a massage.
Snuggle and watch a movie. Or just snuggle.
Decorate his room for the holidays and sing Christmas carols together.
These are just some off the top of my head :)
BIG HUGS
Jo
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