tex-mex Posted May 31, 2011 Share Posted May 31, 2011 (edited) (UPDATE on this thread on message #16.) ********************************************************************* (UPDATE from previous threads... see here.) Long story. (See previous posts above for the entire story.) I've been gone from this WTM Board with my 74 yr. old MIL's cancer. It has turned for the worse in the last week. Hubs is now at her side trying to help his father care for his mother. (Son and I are here in TX.) She is developing a new brain tumor. The Gamma Knife Laser she needed a month ago was offline for repairs and now the new model is ready. But her appointment is June 8. What we thought was a recent stage IV malignant melanoma tumor (surgically removed 7 weeks ago -- it spread to the lymph nodes and 1/2 of the node were malignant) in her lower back later (we thought) spread to her coccyx. She chose to not go thru chemotherapy -- as it showed in late stage malignant melanoma, it is ineffective. She was in agonizing pain to the point where she could not sit, lie down, walk, or use the toilet on her own. FIL took her to see the rural (i.e. tiny) clinic where the Nurse Practioner prescribed her Percocet. It did not work. She was still in much pain. The ER in another town (30 minutes away) saw her and prescribed her an Opiate class drug which made her sleep (she went 3 days without eating and could not communicate). Then upon taking her back to her MRI appointment in the same ER location -- the MRI revealed she had L5,S1 disc degenerated (sciatic nerve pain), they lowered her dosage to Oxycodone. It finally woke her up and she spent the last 3 days this weekend in pain. Same thing all over again. No appetite, cannot sit, etc. She is acting erratically. She will wake up in the middle of the night and try to go outside. One time this weekend, she left the house (they have to bolt the doors, but she still will get out) half dressed saying she had to go to church. Hubs (her son) tried to reason with her that it was Monday and so on. I don't know if this is the side effects of the pain meds or her brain tumor growing due to the long wait for the Gamma Knife laser? She cannot be left alone due to her strange behavior. Today, hubs and FIL decided to drive her to Albuquerque (3 hour drive one way) to see her onocologist at UNM Hospital. They did not have an appointment. But were at their wits' end with the pain MIL was in. They arrived at the ER to be told to wait. Seven hours later... they did not get seen. It sounded like whomever triaged did not put a 74 year old woman with terminal cancer, Sciata, dehydrated, not eating and experiencing delusional behavior as a priority? :glare: Hubs is ripping mad. They are headed home (3 hour drive) to the rural area they live in. I don't understand how she can wait 'til June 8 to see the onocologist. FIL has called him and was told unless she is admitted, they cannot see her? What does one do in a situation like this? Demand to see the onocologist and drive 3 hours (one way) again? Call 9-1-1? Edited June 3, 2011 by tex-mex Quote Link to comment Share on other sites More sharing options...
Cindy in FL. Posted May 31, 2011 Share Posted May 31, 2011 Does her oncologist have an answering service? If so, I'd definitely contact them and explain the situation and ask what they recommend you do. I don't see how they can just wait for the appointment. It seems that action needs to be taken now. It sounds like a nightmare for everyone and I am very sorry for you and your family having to go through this. :grouphug: Quote Link to comment Share on other sites More sharing options...
KnitWit Posted May 31, 2011 Share Posted May 31, 2011 :grouphug: I'm sorry I have no advice, but your story is heart breaking and I just wanted you to know that I read and I will pray for your mil and your family as you try to care for her. :grouphug: I'm so sorry. How awful. Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted May 31, 2011 Share Posted May 31, 2011 (edited) -- Edited November 10, 2021 by prairiewindmomma Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted May 31, 2011 Share Posted May 31, 2011 You have a few choices:1. Go get her admitted--call the oncologist on call, tell them you're bringing her in and they had better get a bed ready by the time you get there. 2. Go into hospice. :grouphug:It sounds like she is end stage, and hospice is WAY better at pain management than most hospital people. They can take care of everything at home. We had oxygen, morphine, ativan, scopalamine--all of the usual end of life stuff. Hospice could even hang an iv had my dd needed one. Most hospice will allow pallitive radiation as a form of pain management. 3. Call the oncologist on call and see what your options are. If you need an additional advocate, call her primary doctor to have him/her chew out the oncologist. Calling 911 isn't going to do much unless they will transfer her via heliocopter because of the long drive. Whatever you do, don't give up until you get her pain managed. That is insane. :iagree::iagree::iagree: Quote Link to comment Share on other sites More sharing options...
Hedgehog Posted May 31, 2011 Share Posted May 31, 2011 Your poor MIL.. and all of you! That is heart-breaking! Whatever you do, don't give up until you get her pain managed. That is insane. Totally. I do hope you can get it worked out soon. It must be so stressful. :grouphug: Quote Link to comment Share on other sites More sharing options...
tex-mex Posted May 31, 2011 Author Share Posted May 31, 2011 I can't imagine WHY her oncologist would not want to find out what is going on with her right now and either prescribe meds or place her in the hospital. I agree. It makes no sense to me that a doctor is like this. I am thinking that my FIL is too polite (he is not a pushy person) and due to this, he is not being aggressive enough to demand help. My hubs did call the pain specialist (Sciata) and he returned back the call minutes ago and made an appointment for MIL this Thursday. Hubs said she sat in her wheelchair in the ER and cognitively seems to understand where she is at... but it is so sad to hear where she is at. 6 months ago, she was sharp, active, and top of her game as a Senior Citizen. The irony is all of her life she adhered to a healthy diet, exercised, and took care of herself. Now it looks like skin cancer is taking her life. Thanks to everyone who replied. Will keep you all informed. :grouphug: Quote Link to comment Share on other sites More sharing options...
JoyfulMama Posted May 31, 2011 Share Posted May 31, 2011 Does her oncologist have an answering service? If so, I'd definitely contact them and explain the situation and ask what they recommend you do. I don't see how they can just wait for the appointment. It seems that action needs to be taken now. It sounds like a nightmare for everyone and I am very sorry for you and your family having to go through this. :grouphug: :iagree: If you are ready to have hospice involved, you don't need to have her admitted to the hospital, but you can keep her comfortable at home. Either the family doc or the oncologist can order that and it can start the next day usually. Quote Link to comment Share on other sites More sharing options...
Sparkle Posted May 31, 2011 Share Posted May 31, 2011 :grouphug: and prayers for all of you. Quote Link to comment Share on other sites More sharing options...
InterestingCase Posted June 1, 2011 Share Posted June 1, 2011 Is she on any sort of Benzodiapine (Xanax, Ativan, Klonopin--aka, alprazolam, lorazepam, or clonazepam)? These are often given to help people rest better and they can produce all kinds of bizarre behavior. Hope things get better for your family. Quote Link to comment Share on other sites More sharing options...
LaxMom Posted June 1, 2011 Share Posted June 1, 2011 Your MIL has experienced mental status changes. At the very least, she should have been admitted for observation. It is appalling how bad our medical system is at dealing with end of life issues. I also suggest hospice, for all the reasons stated before and, not least, the support they can provide for your entire family. I am so sorry you are all going through this. Quote Link to comment Share on other sites More sharing options...
soonermomma Posted June 1, 2011 Share Posted June 1, 2011 She definitely needs hospice care. One of my best friends is a hospice nurse and this is so much like a lot of the cases she takes care of. They will put a nurse at her bedside to help get the pain under control and someone is on call 24 hours a day. :grouphug: to all of you. No one should ever have to see their parent go through that. Quote Link to comment Share on other sites More sharing options...
Little Nyssa Posted June 1, 2011 Share Posted June 1, 2011 Getting the pain specialist involved is the best thing to do! :grouphug: Quote Link to comment Share on other sites More sharing options...
jewellsmommy Posted June 1, 2011 Share Posted June 1, 2011 Just wanted to add :grouphug:. Quote Link to comment Share on other sites More sharing options...
tex-mex Posted June 3, 2011 Author Share Posted June 3, 2011 Thank you everyone! :grouphug::grouphug: I'm holding down the fort here in TX while hubs is assisting care for his mom in NM. I read all of your replies and feel better thinking it just isn't me thinking the same things, kwim? Heavens. Been a hectic last couple of days for us. I'm trying to be supportive to hubs and be there for him when he calls with updates. MIL's only brother will be flying out this weekend to see her (it has been close to 6 years since they have seen each other in person. He understands she does not have much time left. And he will be helping drive her to Albuquerque on June 8 for the Gamma Knife Laser session to reduce the newer brain tumor.). Hopefully, after the Gamma Knife session, son and I can fly up there to help out and be there for Grandma/MIL. Talking it over with hubs yesterday, it sounds like the ER visit was a complete fiasco. Whomever was in charge of triage, did not allow family members to be with MIL for the screening. MIL appears to be pleasant and polite. But she did not tell the screener her cancer, her lack of appetite, inability to move versus regular movement over 2 weeks ago, and more. This is due to her erratic behavior from the painkiller or brain tumor? So, the wait was 7 hours with hubs and FIL giving up in frustration. I did call the on-call onocologist (one of you suggested this) and they were able to call hubs to let him know a bed could be made ready if they could come back to Albuquerque. But by then, they were 2 hours into the 3 hour drive home and they were furious. One good thing was the pain specialist called hubs to arrange an appointment on June 2 for the Sciatica. Hubs told me it was taking 2 people to assist MIL to and from the bedroom to the bathroom -- a 30 minute task. Hubs said he didn't know what the onocologist could do -- I didn't argue with him -- but suggested he call him to alert him of the change in condition in his patient. Today at the pain specialist, the doctor looked at the MRI scans from the other hospital visit and concluded MIL's L5, S1 disc was out of line and protruding. He also said this is classic symptoms for Sciatica. Even the loss of strength and inability to walk in such a short time. She got an adjustment and the much needed cortisone injection shot. The doctor said it might take up to 48 hours to feel relief. (Anyone have experience with cortisone injections into the spine?) MIL is back at home resting. Will keep you all updated. Prayers for her to feel relief with the cortisone injection ASAP. We're still very worried with her confusion and poor cognitive abilities -- but on June 8, the radiation onocologist will see her for a round of Gamma Knife Laser treatment for the new brain tumor. Quote Link to comment Share on other sites More sharing options...
QueenCat Posted June 3, 2011 Share Posted June 3, 2011 Continuing to pray for your mil, your hubby, and family. Quote Link to comment Share on other sites More sharing options...
Farrar Posted June 3, 2011 Share Posted June 3, 2011 From watching my mother deal with these sorts of issues on behalf of her husband for years, I think the only way is to be a complete b***buster and just fight them at every turn when they don't listen. Apologies for my bleeped language there. Good luck and hugs. Quote Link to comment Share on other sites More sharing options...
RoughCollie Posted June 3, 2011 Share Posted June 3, 2011 :grouphug: and prayers. Quote Link to comment Share on other sites More sharing options...
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