Last time I updated you on my mom, it was April and she had been to see Dr. A at UNC and started a new treatment called Irinotecan. One of her tumors started growing while she was on that treatment and in September, she started the clinical trial at UNC. In October, scans showed that a tumor had doubled in size. Dr. A at UNC and Dr. W in Greenville told us that we'd exhausted our options. We opted for 5 radiation treatments to "buy us some more time." They told mom that they wouldn't do anymore scans because we would know if it worked or if it didn't. At that time, Dr. W did the paper work for hospice.
Mom started falling some and became dependent on a wheel chair. Her right arm became limp over time, but she was pretty capable of taking care of herself during the day. About 2 weeks ago, her right leg slowly became limp and she started falling more and more.
Last week, she was noticeably different. I don't know how to describe it. Her words were slurred, her conversations jumped around, and she stayed tired. On Thursday, she tried to go to the bathroom and fell. Weston called me, but I couldn't get her up. She was hysterical. We called Dad and he had to pick her up. She napped that afternoon, but when she woke up she couldn't talk. Sound came out, but it was just random syllables. Then, the right side of her face started twitching. Dad was very concerned and called 911.
At the ER they determined that she was having seizures. She was twitching on both sides of her face and her right leg. With high doses of Attivan, the twitching stopped. She was admitted to the palliative care unit Friday morning. Dad and I are 100% on the same page about keeping her comfortable. A while ago, Mom said that she didn't want to die at home because she didn't want us to have to go through that. With her medicine, confusion, and agitation, there is no way that Dad and I can give her the best care at home. One of the nurses in the palliative care unit told us about the Hospice House. His wife and step daughter had passed away - in fact, his wife died 3 years ago on Christmas Eve. He, and the rest of the nurses there, were so kind and caring.
Christmas was pretty crappy.
On Tuesday we brought her to the Hospice House. It is SO wonderful. The nurses, doctors, and social worker are so caring and sweet. They are taking good care of mom and us. The room has a pull out sofa so we can stay at night. We are trying to keep her as comfortable as possible.
She hasn't been sleeping at night. The first couple of nights she was very combative and trying to get out of bed. It took me plus 3 nurses to keep her in bed on Friday night. She is less and less combative, but still very confused. During the afternoon she has some very lucid moments, but nights and early mornings are bad. We've explained to her 4 times now what is happening, but she does not understand and forgets within minutes. To say that she has a hope that exceeds all hope is an understatement.
She still thinks she's going to get better. She thinks she's at the "Wellness Center" (I have no idea how she thought that up) because the doctors are trying to get her medicine under control and she can't walk because her ankle is hurt.
Having to tell her she's dying sucks. Watching her die sucks. Dealing with her confusion sucks. It all really sucks.
Despite all of this I'm amazed at the strength God provides us. I am constantly realizing his timing and planning in everything. The love we've gotten from friends, family, and our church family has been very helpful. We are well taken care of and very appreciative.
We're looking at a week or two... but that could change rapidly. The brain tumors could easily cause bleeding, and then we'd be looking at days. When she is lucid, its hard to believe she could be gone so soon. When she is agitated and confused, it seems like it could happen any moment. The brain is a funky part of the body. We're definitely on a roller coaster with all the ups and downs.
