Mom got moved today.
We moved from the palliative care unit to hospice. We knew this was coming.
I wish we could have stayed at palliative care, but there is a time limit on how long you may stay. At palliative care, she could still get IV antibiotics, pain meds, etc. Currently, at hospice, she is only getting IV pain meds, and they are actually bending the rules so she can have them. We explained to them that as she is unable to absorb almost anything taken orally, including food, that the oral pain meds would be insufficient and therefore negate what hospice is there for.
We are nervous about this.
Mom dehydrates so quickly once her IV's are gone. She did fine with removing her "milkshake" IV (the nutrition) and actually ate about 1/4 of her soup for lunch. She asked for grilled cheese for dinner, so Dad and I picked it up from Panera's, along with some baked potato soup. I guess I'll find out in the morning how it went.
She has an infection at the moment, in the area where the surgeon repaired her perforation last Saturday (oh my Lord, has it really only been a week?). When he removed her drain in that area yesterday, there was all sorts of lovely stuff coming out. I know most people reading this aren't medically oriented, so I'll just say it was really gross. I have helped the nurses to clean it several times over the past 2 days, and more gunk keeps leaking out. That's the medical term for it. :-)
I'm concerned about this infection. I know that people who die from this cancer die from the complications, such as not being able to absorb the nutrients from food, or their small intestine closing off, etc. I can accept that, in theory. However, I absolutely REFUSE to accept my mother dying from a perfectly treatable infection. I am aware that hospice has to play by certain rules. But I feel that treating infections should be part of their job. It is certainly part of mine.
We really only have to wait till tomorrow for the hospice Dr to look at it and make a decision, it just feels like so long. I am also slightly irritated that the oncologist we have been using who is in charge of this hospice unit will not be here for the next week or so. He was why we picked this unit. I know he needs a vacation too, believe me I get it. It would just be really nice to have continuity of care rather than ANOTHER new doctor.
I guess the longer this goes on, the more stress I am feeling and the shorter my fuse gets. I suppose it's normal, whatever normal is at this point.
Pray that our fears will be alleviated. Pray that Mom won't be in pain. Pray that this infection clears up. Pray that we can make it.
My dad says the most appropriate things. This one he has said before, but he repeated it tonight, and it is exceptionally appropriate. God knows how much we can handle, which proves He knows me better than I do.
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So glad she made it to hospice safely. I understand your aggravation with the infection issues. Hopefully the doctor will be able to get right on it. When Matt said it would be Vitas, I breathed a sigh for you. VITAS is a really good, well-qualified hospice. They make their staff go through more extra training than required by most hospices. She'll be in good care, especially with you staying on top of them.
ReplyDeleteMatt says for you to start carrying some molding clay. It''l give you something to grind down on without ruining your teeth when the aggravation starts to rise. I'm considering buying some caramels for myself.
I love that last paragraph - your dad says appropriate things and you say the truth SO well.
ReplyDeleteWe're praying for you.
Nic, remember what we talked about. This is the time that doubt and guilt will bombard us.
ReplyDeleteWith both of us having medical training that tells us to treat infections and heal patients, hospice care seems so wrong. I kept telling myself that if only we hadnt put my mom in their care, or had tried one more thing, that she might still be here. "These people should be doing something to help my mom instead of putting their effort into pain meds." The thought that she was mad at me for not insisting on another option was always in the back of my mind. It took me a while to see this for what it was-crap sent from satan to chip away at my faith.
Dont fall into this hole sweetie. Its a hard climb back out and satan would like nothing more than to keep us there.
God has shown us that healing on this earth,in a human sense, is not to be. We now have to focus on the reward of heaven that He has promised her.
I have since come to realize that God created hopice Dr.s with the gift of understanding this process. They know the futility of treating infections and such that are going to prolong suffering. She has had too much of that already so we have to focus on where she is going. It will be indescibably wonderful for her, even though we will be miserable.
We are not ready for her to go and never will be no matter how much time we beg God to give us. Remember that she has said she wants no extreme measures and is ready to go. She has entrusted this job to you, a hard burden to carry, but she knows you are strong enough to follow through. I will pray that God will intercept any negative or doubting thoughts and banish them from your mind and for rest, peace and comfort for all of you.
We may be up later today as Roy has finally made it home but has to leave again in the a.m. Hold on to your "sign" and tell your mom I love her.
Continued prayers for your entire family...I think of her all day long, I tell everyone I know to please pray for her and you guys. I like what your dad said...gosh, I want to remember that one..." God knows how much we can handle, which proves He knows me better than I do." God does know...He knows everything...from the beginning to the end.
ReplyDeletePlease tell your mom, I love her!
Today while at my daughters, my granddaughter who started her first day back to school today, pulled out this book, and said, "Maw, this is my prayer book" I said what do you do with it, she said, i put down peoples names so we can pray for them at school ( she goes to a Christian school), I had already told her about your mom, she said" I'm going to put Miss Donna's name there" so even little children are praying for your mom...God loves little children, I think He oftens listens to their pure hearts, maybe even before anyone elses. I just wanted to share that with you. and to let you and your mom know, we love you all, and continued prayers are being said...even by little ones.
ReplyDeleteNicole,
ReplyDeleteThank you very much for sharing this with us. I enjoyed wisiting with your mom last Thursday. I am glad she was so calm. She told me that she will wait for me in heaven.
I pray for peace and comfort for her and you. God bless you. I love you all.
Viesha Kaminska