Mom is Stage 4 and out of options...Caregiver advice?

socrossedup

After fighting off months of pnemonia and it coming back, my Mom was diagnosed in April 2014 with Stage 4 NSCLC with a softball sized tumor in her right lung and a golfball sized tumor in her left and mets in the shoulder and spine. Surgery and radiation were not options. The oncologist recommended chemo. The first cycle of Taxol, Carboplatin and Avastin worked briefly. Then she developed pnemonia again and the doc said the chemo was becoming increasingly toxic to her nerves. Then her next cycle of chemo was Avastin and Alimta. A month into this cycle she got pnemonia again and they drained her lungs again. The doctor told her she had only one other option...Tarceva. So between 3 hospital stays in December 2014 and January 2015, she started Tarceva. Then they found more mets in her upper spine because of back pain and new mets through her chest cavity. The pain has been so bad the doctor recommended radiation for pain control and she will be completing it today. 

But I've noticed since mid-January (her last hospitalization) that she's exhausted all the time and often sleeping 12-18 hours a day, barely eating, she's lost 20 pounds since Christmas, she's relying on a walker and her balance is almost gone, her right foot is completely numb, and needs my help with tasks that were easy.

The doc came back a few weeks ago and told her hospice needs to come in soon and gave her less than 6 months to live, but she has such a strong will she won't consider them until (I think) the very end....

My Mom has always been incredibly independent. But the doctors, nurses and helpers have all told her Hospice is needed and she absolutely refuses to acknowledge this. I've been off work to be her full time caregiver since early December taking care of her everyday but she's pushing me to head back to work now saying she'll be fine and she doesn't need to be babysat, that everything will be fine, and pretty much seems to be in denial about needing help and her health declining so quickly. The doctor tells her straight to her face, you are dying. Nothing can stop it. Nothing can slow it down so you will have years, because for some reason (despite the doctor and nurses telling her) she believes Tarceva will keep her going for years. Even with the Tarceva the doc said she'd be lucky to get 6 months because this is growing and spreading so fast. 

Her most recent checkup this week her blood pressure was down, she had a visibly hard time breathing and moving, and is in pain all the time and in a cycle of painkillers. 

 

I guess my question is....what do I do? I don't want her to go any faster, but I don't want her to be in pain either. She's in denial about how quickly this is happening (talking about getting a new car, but she can't drive) and talking about future plans....I've just been going along with it, but it's kind of scaring me that with point blank discussions with everyone important she won't make any decisions about end of life (except a DNR waiver). I don't know if this is me trying to rationalize it her going but I want to know her wishes and plans and she just won't tell me. She goes over things like where she wants to eventually be and wondering about heaven, but that's it. I have so many more questions and everytime I bring it up (usually after the doctors are brutally honest) the subject is changed quickly. 

 

Should I just be patient? 

 

Thank you in advance for any help...I just have no one to discuss this with.

Matt2015

Advice

Well -- I just signed into this site to read information on lung cancer, 85-yr father just diagnosed with stage 3A.     But..on your mom, with the discussions she is having with you sounds so much like my mom was.   I think she knew I would have the hardest time so was pretty positive for me, always talked to me.   Told me things she wanted to do, places to go but I knew she was too sick.   I would only say try to go with her wishes as long as it's pretty safe for her -- she just wants her independence I guess.   So glad you are having this time with her.   I stayed with my mom the last few weeks and will love those moments of when she woud smile or try to talk to me.    Whe it gets too much on you....then you will need to get some help.       If you have friends asking what they can do, just see if they can drop in for an hour or so just for your mental support -- my friends would drop a sandwich o donuts or drinks by for me and that gave me the mental breaks I needed.     HOpe all goes easy for you and family.   P

Ladylacy

Hospice

Please tell your mother that hospice doesn't mean the end is near.  My husband has been on hospice since Sept 2013 and they are great.  The nurse comes once a week, more if needed.  They supply all pain medication and any medication that she takes dealing with her cancer.  They also provide oxygen, hospital beds, someone to help bath her if she is unable.  My husband has been on a feeding tube since May 2012, hospice also provides his nutrition and has had to replace the feeding tube once and did that at home.  Being on hospice doesn't mean you can't go anywhere either.  The only thing is that you can't see your doctors for anything dealing with the cancer and have to notify them first if you need to see your primary for anything other than the cancer.  You can always come off hospice too.  My husband fell and split the back of his head open and I had to call them first.  The nurse was at our home within 30 minutes.  She told him he needed stitches but he refused so she cleaned the wound (it had stopped bleeding) and put strips on the open wound to pull it close and then checked him out.  He was okay.  The fall was because he is getting weaker and had been refusing to use either the walker or his 4 prong cane.  

Medicare, if she is on it, covers everything.  Most health insurance companies cover it also.  They offer a social worker and minister also.  Many people think hospice is for the very end.  My husband is on in-home hospice as he refuses to go to in-patient hospice.  Many patients do not need in-patient hospice as long as their pain can be controlled at home.  

Wishing you and your family peace and comfort -- Sharon

socrossedup

Thank you Matt2015 and LadyLacy for your replies.

Most of the people that started out saying If we needed any help are too busy...friends and my brother are near but it seems like whenever help would be greatly appreciated, they have plans. It sounds ungrateful, but it's been an eye opener lately because so many people said, "If I can do anything LMK" but the newness has worn off. So it's just me. My brother let it be known he doesn't want to interrupt his life with even visiting her.

We have a home care company come in, but they're not at all helpful. Mostly they come maybe once a week to take her vitals and go over her medicine again (not  a single worker has the correct list even when we've just updated it with them). 

The doctors have told Mom that Tarceva is just putting off the worst and Mom wants any time she has even if it does make her weak and tired and sick. 

We talk about the future, I just don't know how to talk about her future. Everything is depressing and from what people have told me, hope means everything....

 

 

Thank you.