Sunday, April 29, 2007

Bad Days and End of Life Care

I'm really disappointed that I didn't participate in the Take Back The Blog day yesterday. Yesterday was one of the worst days I've had in a long time. I was only lucid for about a total of thirty minutes. The German took care of me. I do remember him taking my temperature a few times and trying to get me to eat something. I just couldn't bring myself to eat. I understand now about why most cancer deaths are because of malnutrition. Sometimes you'd just rather rest and what's going on around you just becomes less important. I wonder if it's going to be like this more and more towards the end.

At one point, I woke up and got up from my bed and walked to the living room where he was. I startled him. I got on the sofa with him and went back to sleep. At some point yesterday, he brought me back into my bed room. I didn't wake up again until 7:00 a.m. this morning. I feel really awful right now. I just ate a rice cake and a granola bar. Maybe that will stop me from feeling so shaky. I've learned to pay attention to the other stuff that my body does in order to try and tell if I might need to eat. I wonder why I just don't feel hungry some days. The German keeps lots of my favorite foods around the house all of the time in the hopes that I might be tempted to eat even if I'm not feeling hungry.

Yesterday he kept offering to make me tomato soup which is one of my absolute favorite foods. It doesn't require a lot of chewing so when I'm sick it's one of my favorites to choose. Yesterday, he told me all of the good stuff that he'd put in my soup if I'd eat. I feel like crying today thinking about it. He tries so hard. It's not fair for him to have to go through all of this at our age.

I've told him that when I get really sick that I want to be put in a nursing home or hospice. The only thing that makes me kind of wish that I could die at home is that I'd like to be able to spend as much time as possible with VanGoghGirl. But there are a lot of reasons why I think it will be best for me to go into a hospice. The German isn't the kind of person who knows when he needs to take a break. He just keeps going until he can't force his body to keep going any further. He was asleep with the thermometer in his hand, when I woke up this morning. I accidentally woke him up and he immediately started rubbing my back. I don't think he even realized that he had fallen asleep. If I tried to die at home, his health would suffer too much. He wouldn't spend enough time taking care of himself. If he did that, then how would he be able to take care of VanGoghGirl by himself?

If I was in a hospice, he could come and see me and bring VanGoghGirl without having to be responsible for all of my day to day needs. I think he deserves that. So does she. They'd never rest comfortably here if all day long they constantly had to pass by the bedroom where I died. That's just creepy, I think. I want home to be a place where they can feel comfortable and happy and associate with the good times we've had together. I think that when the time comes, going into a hospice will be the sacrifice I make for them and I think that it will make me feel good to be able to do something for them after all they've done for me.


Renegade Evolution said...

BA: You're more important than a blogging day. Take care.

brownfemipower said...

I don't know bint--I know you've probably already consider it and thought about it, but W*'s grandfather died at home with hospice care (he had ALS) and it was really the best thing for the family. They got to hold his hand, and talk with him--they all feel like they "helped him cross". and then after he died, they spent the rest of the day with him, just holding each other, telling stories, touching him--maybe with hospice care at home with you, the german could spend time loving you and being together with you rather than caretaking?

and in regards to the "death room"--Maybe it's a cultural thing, as mexicans sort of celebrate death (we have the day of the dead, for example, and lots of our art work is based on the skeleton figure)--but rather than be freaked out by the room you died in, I would honor it. I would probably put up an altar and spend lots of time in there reflecting on you, on myself-on life. Life is a part of death, just like happiness is a part of sadness. The way I look at it, your life would be as much a part of "our" family as your death would--I wouldn't quarantine/avoid rooms that we laughed like crazy in, so why would I quarantine/avoid rooms that we shared the experience of death in?

I know you've thought about all of this more than you could even give credit to on this blog, so I say none of this with the intention of saying that your choices are wrong bint--just saying that there are different perspectives.

brownfemipower said...

and bint--for real--loving you deeply, hoping your appetite returns.

bint alshamsa said...


I am really glad that you wrote this. It is one of the hardest things for me to talk about. I honestly hadn't thought about it in the way that you look at it. It's just...I don't know, I just don't want to be any more of a burden than I already am. I feel like they are already traumatized so much by having to deal with my cancer experience so far.

It's really selfish but I do wish I could die at home. I'd like to be in my own bed or at least in my own room. But I just don't want to put them through even more.

If I could get hospice care at home, that would be ideal. Even though I couldn't do much with her, when I was really sick the last time, it was nice to be able to hear her skipping around the house, talking to her friends on the phone, playing with her toys. It's really soothing to be able to hear the sounds of home--the television blaring, the toilet flushing, doors opening and closing, people fussing and laughing, food sizzling in the kitchen. I never noticed those sounds until I was stuck in bed for a few months.

It would be nice. But maybe they wouldn't tell me if it got to be too much for them having me here, even with hospice care. Nobody would tell me. I know my sisters and brothers would come but they all have lives and having to put them on hold to deal with a dying sister isn't exactly convenient.

After reading your comments, I think I'm going to talk about this subject with The German and my siblings. I have no plans on kicking the bucket just yet but my life is just so unpredictable that it's probably best for me to dialogue with them now while we can really discuss this together.

BFP, your friendship means more to me than you know.


belledame222 said...

ah, BA. i'm sorry it's so rough right now. ((hugs))

yeah, i agree wrt hospice and the general subject being a difficult but important one that we don't talk about enough in (much of) U.S. culture(s). and i have more to say about it;

but right now i just want to say: feel better!


Anonymous said...

Oh my dear friend, I am so sorry that it has taken so long to respond to you. I've told you before but I am saying it again, I think of you every single day whether you blog or not.

I know I cannot tell you anything that you do not know or haven't thought about deeply but I just want to share this thought. If you were my sister, girlfriend, mum or friend I would want you near at the end and no amount of care or love would be a burden.

My mum has lived (and we have by default) with a "one year to live" rare terminal illness for 40 years. It is hard when she is sick and I know she feels guilty that she is a burden to us. But she's our mum and whatever it takes so that we can be together when the time comes is the best for all of us.

At some point I am sure you will be able to discuss all this with the German and VanGoghGirl and perhaps you will be surprised at the strength of their feelings about you being at home with them when you die.

Anyway, darling, take care of yourself and be well soon. If you want to chat at anytime just buzz me if I'm online.

Thinking of you even more than I already do! Kisses


Trula said...

Oh mama. I have no words. Just ***hugs***

elle said...

bint, you've been on my mind since i first read this. i'm thinking of you.

Hahni said...

All the times I've spent in hospital have made the possibility of dying at home more appealing. You're right, the sounds of home, the smells of home; I always think of having the windows open and listening to the neighborhood kids and the birds, and maybe if I'm lucky somebody will be barbecuing and I'll be able to smell that.

But I respect and honor anybody's end of life decisions. I know they don't come lightly. I wish you well, bint.