I wrote a post yesterday and then Blogger ate my homework. Grr.
Here's the short version of the story:
GH came home on Friday. Yay!
He has hepatorenal syndrome. Boo.
I'm on leave from work. Yay!
The reason I'm on leave sucks. Boo.
My mom is here. Yay!
My in-laws are here. Boo.
My in-laws are leaving tomorrow. Yay!
They will be back soon. Boo.
Hospice will be managing the procurement and delivery of all of GH's medications, thus freeing us from the incompetent morons at our local pharmacy. Yay!
GH is on hospice care. Boo.
Overall, GH is doing OK. He's very tired and his abdomen and legs are filled with fluid, making it hard for him to walk around and hard for him to eat. He spends most of the day in bed, and so far has not really had the energy to do some of the things he hopes to do (write some letters, record some stories for the babies). He's going to try to start on some of that today. Emotionally, he's hanging in, although I think he feels very conflicted by wanting his parents around because they are his parents and yet finding dealing with his parents exhausting.
I'm also doing OK. I think it's a combination of the surreality of it all and just dealing with the things I have to as they come rather than thinking about the ultimate outcome. I have social workers coming out my ears: a hospice social worker, an Early Intervention social worker, and an oncology social worker through GH's oncologist's office. Hopefully they can help me figure out how to manage GH's parents and the flood of friends that want to come visit. People want to help and people want to see GH, but I'm very protective of our time together and I don't want him to spend all of his energy on friends and not have any for me. I'm so selfish!
GH's parents are leaving tomorrow. My mom and I are going to go run errands this afternoon and give GH and his parents some time together alone before they go. Then he's mine, all mine! I'm hoping that we can watch 24 together tonight. We missed it last week because of GH's hospital admission, but my mom taped it for us and we watched that episode last night. That show is getting out of control, but I can't stop watching.
I'd thought that when we got to this point, I'd want to take a big trip with GH, or at least get away for a few days alone. I find, though, that now that we're here, I don't care about that at all. Any time together is fine with me. I don't care where we are. Even our alone time in the hospital was wonderful, in its own strange and tragic way.
I also find that I'm obsessed with getting GH to do things for the babies. I really, really want him to write the babies letters and for him to record stories on tape for them. It's hard for me to keep the perspective that while that is important to me, it's up to GH to determine what's most important to him and how he wants to spend his time. I've told him that's important to me, and I know it's important to him, too, but we'll see how he prioritizes things.
We should be getting a visit from our regular hospice nurse today. The weekend on-duty person came by on Saturday. He was very helpful. I hate that hospice is a part of our life, but I hope that the hospice folks will be able to help us find our way down this road.
Next up in posting: more gallows humor. Neither my father-in-law nor my breast pump are involved.
Subscribe to:
Post Comments (Atom)
Posts
20 comments:
It sounds like you have help, some wanted, some not. I'm sorry about all the negative circumstances and glad to hear about the positive ones. Was thinking about you yesterday and hoping you were doing OK. Glad you're home and glad you're back to blogging. We're here to listen.
You are NOT selfish. Put that thought out of your mind. You love GH and your kids. Never make excuses for something so beautiful.
Hospice truly helped me and my family when our Dad died. The two nurses who were there when he finally succumbed to heart failure helped me help HIM to die with dignity. They're angels.
All my warmth and love coming to you guys!
Thinking of you...
If what you are is selfish, I'd say, "have at it." You and GH are entitled to anything-any feeling, any activity, or lack of it, any hope. I'm glad you have the help of hospice. I'm glad you have your mother. I'm glad for whatever wonderful moments you and GH have.
I wish I could help. I send my love.
I hope you find the time for you and GH to just be for a bit, and I hope that Hospice can be a real support for you as you navigate this difficult path.
You all remain in my prayers and thoughts.
I'm glad to hear he's home and that you will be able to have some alone time with him.
We also found the hospice people to be very kind and helpful, in contrast to a lot of the other people we dealt with in the medical establishment.
You, GH, and the twins are on my mind a lot lately. Sending thoughts/ prayers your way.
Thinking of you, all the time.
The hospice social worker must have experience with managing well-meaning friends. I know if I were the friend, I would want to visit, but I would also want to be told when it was time to go (assuming that you and GH know better than anyone else how much visiting the two of you can handle physically and emotionally), because I know that I don't always gauge that well by myself. I'd certainly understand your need to have time with GH alone.
During my friend's last days his wife threw a party at their house. We were surprised at the thought but it was actually very very nice. Everyone brought a little something to eat and drink, everyone cleaned up as they went, and everyone left very early after spending some time together and visiting with Kevin. I realize now it was his wife's way of compromising between her need to spend as much time with him as possible and having his friends be able to say goodbye.
Not suggesting this to you, just sharing.
Thinking about you a lot.
I don't blame you for being selfish with your time with GH. I would be too. You all are always in my prayers. Jill
Don't know what else to say that hasn't already been said. Thinking of you daily. Hugs all around.
There is so much I want to say, even knowing that none of it really matters.
Keep as much time for your family (nuclear) as you can; GH will let you know which friends he really wants to see, and everyone else will simply have to deal (and they will, with grace).
Being home is best. Glad you have help and the wisdom to treasure even the hard moments.
Crying too hard to type; it's all so familiar, and so cruel.
i also have nothing that hasn't already been said - and more elegantly than i could. but as always, wanted to say that i'm still thinking of you and GH and the twins often.
I find no selfishness in your actions. You are protecting your family, your relationships, and your memories. While it sounds like the social workers might be a bit overwhelming, it sounds like a good problem to have. Lots of people wanting to help out. Same with your friends wanting to visit. Too much love.
Thinking of you.
I'm thinking of you.
Oh sweetie, I just can't even imagine. You take all the time you need. The most important thing is you, GH, and those babies.
As always, I am thinking of you all.
Here is a smile to make your day a little brighter
Thinking of you.
Doctor Mama sent me. I wish I had the perfect words to send to you - I hope that the hospice people are wonderful and helpful to you. All best to you and your family.
I have some friends who are going through the same thing - her husband is in the end stages of brain cancer. I marvel at women like you and my friend Amy - so graceful under such sucky circumstances. But I wish you peace and joy in these days.
Post a Comment