Well I didn't meet any of my goals this week. I have also avoided the scale. Tuesday I start the 2 week pre-op diet so I should at least stop gaining but I have really done quite a bit of "self medicating" with food this week. Things are kind of progressing a little bit faster than I thought they would with my dad. I think I may have to start spending the night down at my parents house to help out with my dad. We will see how it goes. Below I have cut and pasted an email that I sent to my friends/prayer group. Any advice you guys can give me would be much appreciated. I know what my dad wants....I guess we just need to be brave enough to follow through with it.
"Hello all,
I am updating you all because I don't really think I can do it over the phone and most times that you call, I am not alone and can't really talk. Also, please be warned that I am not emotionally equipped to sensor myself right now and this email may be a little dramatic. (and long...sorry)
On Friday, I got a call from mom (during a fabulous marathon ARD), that the hospice nurse wanted to bring in a hospital bed for dad. This freaked mom out as she finally recognized how much dad had changed just from Tuesday when we had our first visit with the hospice nurse. She didn't want to/couldn't make any decisions concerning the bed so I came home to be a part of the decision making process. Since Tuesday, when we started treating dad for his pain, he has basically been asleep. Even when needing to go to the restroom he has been unable to wake up enough to stand and sit in the wheel chair. I am not quite sure how mom was handling it during the day except to say that he wasn't eating or drinking so there wasn't much output, but when I was helping it took all of my strenght to lift him and get him in the chair so I know it had been difficult for her.
Friday, while waiting for the bed to arrive, I called my sister and she agreed that she was going to come up to Dallas. We eventually got dad set up in the hospital bed in the living room where he continued to sleep until just a few hours ago when he finally woke up and drank some water and had some yogurt. During all of this craziness, we also had my aunt and uncle, my cousin and his wife and the twin boys up here running around the house. I don't think any of us minded though because it was a great distraction and kept things feeling normal in a very not normal situation.
Now everyone has left except for my sister and we are all just sitting here in the living room, watching dad sleep. Here's where the email gets ugly....
Here are the questions that I need answers to (and I understand that you all can't answer them but I just need to write them down and ask that your prayers for me are specific to these needs)
Are we overmedicating my father? How is it that we can go from Tuesday when he was discussing his pain with the nurse and could hold a somewhat lucid conversation, to Friday and him barely being able to stand up and having lost the ability to determine what is reality and what is hallucination (ie....he keeps trying to get up because the bell is ringing and that means it is time to go home, and no matter how much we reassure him that he is already home, he just thinks we are crazy) and not eating or drinking? If that's not being overmedicated then I don't know what is.
If we are overmedicating him.....should we care? Is this how hospice works? Did I just not fully understand what hospice would mean for my dad? Which is totally possible because I can barely understand what a world without him would be like so how could I understand this? He did say to us that all he wanted to do was sleep so should we honor that and just let him? Is this an answer to dad's prayers? I don't know that I could handle the fact that I have had the last real conversation with my father, which would be the case if we keep going down this path.
How long is this going to last? I was ok with dad being on hospice for a long while because in my perfect world scenario he was still able to have a conversation with me, and sit in his chair and sleep in his own bed all while receiving hospice care. Praying for his suffering to be quick is the equivelant of praying for him to die. How am I supposed to do that?
Ugh...I swear I am not losing it. I am holding things together pretty well but these are things that I can't answer and I don't like it and it makes me uncomfortable. So there it is. Your dose of crazy for the evening. I don't expect any kind of response, I just needed to get it out there which has always been hard for me to do.
Love you all..."
Goals for the week. 1200 calories a day/liquid during the day and protein at night. Walking....I think boot camp is a little overwhelming for me right now so I am going to focus on walking a minimum of 4 days this week. Plus I think I have injured my right arm and would only aggrevate it with the exercises we do at boot camp.

16 comments:
Angela,
Reading your post/email was like listening to myself a few years ago. I hated that my mom was so medicated that 'she wasn't there' but I hated it in a selfish way (and I still do). Because she needed the relief from the pain and just wanted her to be here for as long as I could have her.
In my case, it also happened fast. Well, she was sick for a long time but when hospice came, it happened fast.
I remember that this is what she wanted; she was tired and wanted peace.
It hurts us, but my mom and probably your dad, have hurt so long that they just want peace from the pain.
I am sorry, Angela, I really am. Crawl into that hospital bed with him and just hug him while he sleeps.
Oh Angela. I'm so sorry. I don't have any answers for you, but am absolutely praying (and specifically) for you and your family. I have intense faith and believe that the right choices will be made for both your dad and the rest of you.
I think you are exactly right that boot camp would be too much right now. You need to take care of yourself - the emotional part - more than you need to take care of the physical part right now. Give yourself a break. Make your goals and do the best you can and if you go off your plan forgive yourself and move on.
I love you.
I don't have anything helpful to say, I'm sorry for these difficult times. Wish I could give you a big hug right now. Thinking of you and your family.
Hugs hun - hang in there xxx
Wow... you are dealing with a lot. I'm glad others have some first hand experience with this. I've only seen it by a claims point of view. It tends to go the same way they all described. And when I think back to my grandmother... she was out of it too when we had our last conversation.
You and your family are in my prayers though. ((HUGS))
Don't fret too much on the weight loss stuff... You have a lot happening right now.
Don't have any advice for you but will keep you, your dad and family in my prayers.
Prayers are going up for you and your family during this time. I can't imagine the grief and confusion you must be feeling. I'm here for you if you need me. Try to hang in there.
Sending you lots of love and prayers. I am sorry and hope that you find your answers. <3
Angela, I'm so sorry that you and your family are going through this. You will continue to be in my prayers. I know how hard it is. I do know that the medication is a blessing and a curse in this situation when you just want to know that you're doing the right thing. Take care of yourself too. Hang in there, we are here for you if you need us!
Angela, I am a Hospice nurse so if you need to talk I can help you explore some of these questions you have. email me at scottkelli@cox.net and I will give you my number. in the meantime hang in there and I will keep you all in my prayers.
I don't have any advice for you because I haven't had to go through this. I am praying for you and your family!!!
You and your whole family are in my prayers Angela. My only advice to you is to take advantage of the time you have left with your dad. Tell him how much you love him at every opportunity. Leave nothing unsaid. Hospice gives you this time.
I will say that having him medicated and in no pain is the humane thing that you can do for your father. Dying is very painful, when the organs begin to fail. Being able to give relief is a wonderful feeling. I know that feeling of wishing you had more time oh so well. The hearing is the last organ to fail. So please, make sure you read to him, talk to him and even sing to him. These will be comforts that he CAN respond to but perhaps not with words.
My heart breaks for you, and I do wish I could hug you.
You are so strong, and you will be ok with your weight. Concentrate on your dad right now.
I've never been through this so I have no words of wisdom for you. You and your family are in my thoughts and prayers and I hope that God eases you and your father's suffering. ((HUGS))
just sent a prayer up for you girl, with tears in my eyes....this post hits home for me. I pray for divine guidance for you and your mom and for God's will to be done in regards to your daddy. big hugsxxx
I've also never been through this so have no info/advice. Still, you and your family are in my thoughts and prayers. I hope that God eases all of your family's suffering.
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