Thursday, April 22, 2010

The next phase

BR just got a beautiful batik scarf from Gina in some of the new colors she is using. Makes a lovely IV pole drape!



I didn't get much sleep last night. BR was very restless, but it was a different kind of restless. I could tell he wasn't in pain. The doctor told us this morning that she is pretty sure he is experiencing "terminal delirium" during which he gets restless, has conversations with people who aren't there, and can even try to get out of bed. So we have moved on from treating his pain, to treating the physiological issues that cause the dying brain to be restless. He will continue to receive his pain medications, but they won't be adjusted going forward.

I asked the doctor if we should be encouraging him to "let go and pass on." She said that at this point, he is probably hearing what we are saying, recognizing the voices, but not necessarily catching the intended meaning. She recommended that we tell him we wish he wasn't going, but it is OK that he does. She also recommended giving specifics about how we are going to continue on once he is gone. Not just that I will continue my relationship and care for his mother, but that I will call her regularly and still celebrate holidays with her. Basically, we should put ourselves in his helpless position and imagine the things we would want to hear.

He has received a lot of voice messages from friends that I play for him each evening. With each voice that he hears, he seems to recognize the person speaking and to enjoy what they say. I feel the same way about the comments left here. Thank you!

13 comments:

Stephany said...

Many blessings and love and joy to you Steve. I believe he does hear it, and feel your love and words and all going on around him. Keep speaking to him as if he is here, --he is---

You are a gift to him, you always were, but now even more.

Thank you for sharing this as it happens, it is very profound and I want you to know people around the world are with both of you now.

Peace.

Anonymous said...

Praying for you Steve and thinking of you both every moment of every day. I'm simply at a loss for words.

All of our love,
Meredith and Andrew

Diane J Standiford said...

Yes, those are things I would want to hear---that my partner will carry on and she will be okay. We have discussed this. We are ready when time comes. Sending love and strength your way.

Richie said...

words fail me today.
Just lots of love to you.
Richie

joypugh said...

Steve, you, Bobrobert and your families are in my thoughts and prayers every day.

We all celebrate a beautiful soul that is nearing peace.

Love,

joy Pugh
Chicago

S.S-O said...

Keeping you both in my thoughts always!

Anonymous said...

Sweetie...his Chickenhead Catwoman and I will be there as fast as the Texas State Troopers will allow us to fly tonight!

Sending you comfort and love.

Sharon

zoomdoggies said...

Thank you so much for sharing this experience, showing the end of a life that is just as loving and beautiful as its beginning.

Herrad said...

Hi Steve,
Heart breaking reading about your darling BobRobert.
Like Stephany I too believe he can hear you.
I was very happy to read this week that you have been able to communicate and tell him how much you love him.
Thinking of you both.
Love,
Herrad

Cranky said...

Steve - thinking of you often. Offering whatever support I can provide through the interwebs. I know it may be hard to do in the current circumstances, but please try and take care of yourself.

Love, Cranky

Hayley said...

Thank you for sharing this experience with those that love both of you. It is as exquisitely beautiful as it is exquisitely painful.

Sending you love,
Hayley

mortonlake said...

steve,in my thoughts,tc mort

Shirley said...

Steve,

I just happened on your blog through an MS blog the other day and although I have never had the pleasure of meeting you or BobRobert, I just wanted to offer my condolences and pray that you will find the strength (and you will) to get through this very tough time. It sounds like you had a wonderful relationship and you can continue to have that through Spirit and ongoing love.

Shirley from Canada