DGB Posted October 1, 2007 Share Posted October 1, 2007 I'm Dusti, age 39. My mom is 59 and is in what the doctors say is stage 4 lung cancer and end stages COPD. They've told her she's not a candidate for treatment as giving her a biopsy would kill her. They say without "tissue" biopsy they can't refer her to oncology for treatment. They say that treatment would be futile as she has so many other health issues. They're giving her lots of antibiotics for constant infections in lungs; prednisone; and dilaudid and darvocet for pain. She's allergic to morophine. She lives alone and flat refuses to go to a care facility. I am the only family in town and not available 24/7 to provide care so she can't get hospice. I have a 6 yr old daughter and a husband. Mom can barely walk and can no longer care for her self without help...She doesn't care...she insists on going home and living alone. She's currently in hospital with more infections and shortness of breath and cardiac problems. She smoked for 40+ years. Doctors found abnormal nodes on CT in April and ordered PET SCAN...it lit up like a X-mas tree in several locations...left lung, lymph nodes, esp in chest wrapping around aorta, clavicle, 7th Rib L side, subcaranial, etc. She went into respiratory arrest 6x in 2006. Since 2006, she's been hospitalized every 6 to 8 weeks. I'm just feeling really torn up over the fact that there is no hope and nothing anybody can do. I also have a ton of guilt that I can not move in and take care of her and she can't come live with me... I'm not sure if this is a place to post or not. Mom will be released from the hospital in the next few days and going home. I am so scared that she will fall or burn the house down by trying to cook. I will be there at least 8-12 hours a day when not working. It's those times when I'm not there that I worry about. I don't have the # and my mom has NO MONEY to hire help. Mercy Home Health should come out 2x week for 9 weeks. Any advice? Anybody else going through this? Quote Link to comment Share on other sites More sharing options...
DGB Posted October 1, 2007 Author Share Posted October 1, 2007 My mom has had all the Mercy doctors look at her chest CT's as well as the pet scan and all agree that she is NOT a candidate for a needle biopsy...They say they can't do a thing. I would love to have info on meal delivery...my husband and I have been cooking and delivering meals daily for the last 8 months or so. What I need the most is volunteers to help when I'm not there, etc. I'm new to this and appreciate any all advice or resources. If they can't do a biopsy, then how can they prescribe any radiation or chemo or anything else? Her pulmonologist says nothing can be done and the hospitalists and her GP agree......sigh.... She is weak and end stages COPD...the cancer is growing and spreading. She hasn't lost her appetite though...quite the opposite... Thank you for allowing me to post here... Quote Link to comment Share on other sites More sharing options...
DGB Posted October 1, 2007 Author Share Posted October 1, 2007 Forgot to add that she has been receiving IHSS (in home support services) for 95.5 hours a month..I am the provider of these services...on top of other part time jobs... I have requested that IHSS contact her doctor for updated assessment of need. Orignal 95.5 hours was based on COPD...not lung cancer... I will look into other resources and continue calling her DHSS worker.. Thank you! Quote Link to comment Share on other sites More sharing options...
fillise Posted October 1, 2007 Share Posted October 1, 2007 Unfortunatley you can't make your mom do something she doesn't want to do. You CAN, however, get her a second opinion. If it is determined that your mom is truly in the end stages of COPD and/or LC, you can call in hospice. Perhaps your mom would be more willing to let them in if it is presented to her as a way to stay in her own home. Let us know what we can do to help. Susan Quote Link to comment Share on other sites More sharing options...
Don M Posted October 1, 2007 Share Posted October 1, 2007 Hi: what a tough road you and your mom have. I agree that your mom should get a second opinion and/or hospice care. Also, I have been treated for my third cancer without a biopsy because it was deemed too risky. Although, in my case, the first 2 cancers were known adenocarcinomas and so the likelihood of my 3rd cancer being adenocarcinoma is very high. Don M Quote Link to comment Share on other sites More sharing options...
DGB Posted October 1, 2007 Author Share Posted October 1, 2007 Thank you all. We've been told that in order to receive hospice that my mom must have 24 hour care at home which means that somebody must be with her 24/7....which is physically impossible for me alone. Her lungs are in really bad shape...they have been for the last few years...the 6x respiratory arrest was before lung cancer was diagnosed... Her pulmonary doctor says that it's not worth the risk of deflating her lung to get a biopsy as she'd likely not be able to come off the vent. If they were to give any general aneshesia, she's likely to not wake up from it... So it's Monday, a new day, a new week... Thank you all for your assistance. I'll keep you updated. Quote Link to comment Share on other sites More sharing options...
DGB Posted October 1, 2007 Author Share Posted October 1, 2007 My mom told the hospice folks at the hospital...without asking me first...that I would stay the night with her and stay with her until further notice...until they can come out to her home and evaluate her. So based on this, she has been discharged from the hospital. I have to go pick her up as soon as I pick my daugher up from school. I have a family of my own. I feel extremely taken for granted and taken advantage of. I am so upset about this! Before somebody slams me for being selfish, please understand that I'm not! I am trying to be realistic. Thanks for letting me post. Quote Link to comment Share on other sites More sharing options...
wendyr Posted October 2, 2007 Share Posted October 2, 2007 Hi Dusti and welcome. You and your mom are in a tough situation. Is it possible to move her in with you. I realize that may not take care of the 24/7 care she needs but it may be easier on you. Even though you may not be a member of a church there would be no harm in contacting the closest church of your faith and explaining your situation to them. They may not be able to help, but what the heck, nothing ventured, nothing gained. Keep us posted. Good Luck & God Bless wendyr Quote Link to comment Share on other sites More sharing options...
fillise Posted October 2, 2007 Share Posted October 2, 2007 Dusti--There are different hospice organizations, so call around until you find one that seems to be right for your mom. I think others on this board have been told the same thing and called round and found out it wasn't necessrily true. I'll be thinging about you, Susan Quote Link to comment Share on other sites More sharing options...
DGB Posted October 2, 2007 Author Share Posted October 2, 2007 Mom refuses to leave home. We live 1.5 miles away so very close. Her mental and physical situation continue to deteriorate. Bizarre behavior and haulcinations...in and out of reality/mental stability..I stay with her during the day, at night, and come home at 6am to shower and get child to school. It may end up that I am forced to get a conservatorship? Just taking it a day at a time. Thinking of getting a friend to videotape Mom so people don't think I'm exaggerating and maybe her doctors will help get her into a facility? My mom is aware that she isn't acting normal when she's lucid. I am not sleeping well, as would be expected. She gets up a lot at night so I sleep with one eye open. This will all be over soon so I'm making the best of it. Thanks for well wishes and support. Off to take child to school and make more phone calls. Quote Link to comment Share on other sites More sharing options...
DGB Posted October 3, 2007 Author Share Posted October 3, 2007 Good news. The hopice people from Mercy Hospital came out today and spent several hours setting up services, supplying Mom's pain meds, etc. . My mom is being set up on a 2x weekly hospice nurse visit and referred for other services. Hospice is now handling all of the pain meds, etc. For now, I'll continue being at mom's as much as possible to help. Hospice is not requiring I be there 24/7 at this point. My mom has agreed to not cook...take it easy..follow THEIR guidelines/rules. Thanks for all the well wishes and prayers. They are appreciated! Quote Link to comment Share on other sites More sharing options...
recce101 Posted October 3, 2007 Share Posted October 3, 2007 "DGB" My mom has agreed to not cook...take it easy..follow THEIR guidelines/rules. You might consider removing or disabling any appliances that could be a fire hazard if she "forgets" -- keep you from worrying QUITE so much when you're not there and help you sleep a LITTLE better when you are. You're doing a wonderful job in a horrible, often thankless situation. My Aloha, Ned Quote Link to comment Share on other sites More sharing options...
michellem Posted October 3, 2007 Share Posted October 3, 2007 Ow you poor thing, I have been reading your posts. You are doing so much for her you are really so great. We know here you are not exagerating, well i do anyway because my mum has had an awful time recently with pain, hilusinasions and weekness. You are taking on so much. I hope things get easier for you and you get some help from people around you. I will think of you and your mom in my prayers. take care Quote Link to comment Share on other sites More sharing options...
DGB Posted October 4, 2007 Author Share Posted October 4, 2007 Mom has done a 180 since yesterday. Today, she forgot how to answer the phone. I came in and found her semi conscious and half dressed. Managed to clean her up some and call hospice case manager as mom agreed she needs full care facility. She started being delusional, etc. (Found Dilaudid spilled on floor, etc.) So long story short...having straight Medi Cal, we will be placed on a waiting list for a room in a facility that takes Medi Cal. The social worker should come out tomorrow. A hospital bed was delivered today. Now I'm waiting for hospice nurse to call me back as mom's pain in intollerable... Called a friend to come stay with me in case I fall asleep (fat chance!) My mom's step mom is here too. So we're taking it an hour at a time...Mom's lucid at times saying her goodbyes...and in la la land the next. We've told her that God will come for her soon. Thank you all for the understanding and a safe place to post. Blessings........ Quote Link to comment Share on other sites More sharing options...
Dollfinn Posted October 4, 2007 Share Posted October 4, 2007 Dusti~ What a situation, I do need to ask, is your Mom willing to accept help? May sound funny but she seems pretty set in the decisions she makes. My LC is being treated soley by the Bx from my chest wall outside the lung. The mass in my lung has never been Bx. I also know for sure, if the hospital can (they SHOULD) give symptom relief, it may give your Mom just a tad more strength to press on. keep in touch, sending prayers your way, Mary Quote Link to comment Share on other sites More sharing options...
DGB Posted October 6, 2007 Author Share Posted October 6, 2007 This is really long, so bear with me! Mom didn't have the strength to fight and lost her battle this morning at 5:15 am. Thanks for all your prayers: The week in review (should be my "profile") A re-cap of my week! Monday, Mom came home from hospital. I stayed night Mon night. She seemed OK..Restless and uncomfortable but OK. Tuesday morning I left and went home to take daughter to school and then went grocery shopping. Also Tues, we set up hospice intake. My mom seemed OK that day. I made a great supper that night but my mom said she couldn't eat and maybe tomorrow she'd eat something? She assured me she'd be OK Tues night so I went home. Wed morning she called me at 6:45 while I was in the shower. She said she was OK and she'd see me at 8:30 am. When I got to her house she was anything but OK...meds spilled, she was a mess, house torn apart, she was delusional. Got her to have a little while of lucidity so I could clean her up, change her clothes and call hospice and a social worker. Mom agreed on Wed that she'd go to a care facility. She said she knew it wouldn't be long and she new she was losing it mentally and physically. Case manager for hospice showed up at 10:30 am and ordered hospital bed for home and called for "worker on call" Social Worker to contact us....Social worker's day off...We were able to get Mom in bed...sort of lucid...back and forth between bed and bedside commode no problem. Got her back in bed. She refused all food and drink. Friend came over to help with mom. Mom got lucid and said goodbyes and had me call people...Then she got frantic/delusional and tried to get out of bed but couldn't stand/walk. Called my mom's step mom, Granny Sharon to come over for back up. We got Mom to get back in bed and take a sedative and pain pills...hard for her to swallow..Called Hospice After Hours Nurse who called in liquid pain and sedation meds to the hospital...I raced over and got them. Got back and gave some to Mom. Thursday: By 12:30 am we got her to sleep...until 4:30 am. I slept 1:30 until 4:00 am. Mom then woke up and was frantic and trying to get out of bed...her leg got caught side ways in bed side commode frame (Th morning). I called hospice for advice, permission to call 911 to get her back in bed. It took 5 men to lift her back in bed as she had no muscle control. She got back into the bed and we blocked off the bed with chairs all around so she couldn't get out. Called Hospice Nurse and begged for Social Services Help. They weren't sure they could get Mom into a Care Facility as she had Medi-Cal and no $. As luck would have it, we found a place. While waiting for transport, mom slipped into a coma. She was transported to facility at 12:00 pm, Thursday the 4th. High School friend who was a paramedic for 15 yrs came and sat with me and confirmed what doctors and nurses were saying and gave me approx time line, etc. Did a lot of journaling and praying. Took a 2 hr break and went back until 11:30 pm. Took photos of mom with me so I could remember what she used to look like.. Friday: Went home and went to bed at 12:30 am Friday morning. Phone rang at 5:20 am on Friday, Oct 5th. My mom died at 5:15 am. I went back over before Hospice even arrived to say good bye. Funeral home transport arrived...The care home hadn't put a transfer sheet on Mom so the hospice nurse and I helped move her to the wrap and bag...not a pretty site...Went and got Starbuck's afterward and made the calls. Did the whole final arrangements meeting and paid the bill. Came back to my mom's and have been sorting and cleaning ever since. I am glad my mom's suffering is over. I wanted the situation to end. I want HER back though. I miss her so much! Quote Link to comment Share on other sites More sharing options...
wendyr Posted October 6, 2007 Share Posted October 6, 2007 (((DGB))) Hugs to you. You have been an amazing daughter in the face of terrible adversity. Your situation with your sister will play out in due time, but for now Mom is at rest and at peace. Prayers for strength for the difficult days ahead. God Bless wendyr Quote Link to comment Share on other sites More sharing options...
Leela Posted October 6, 2007 Share Posted October 6, 2007 Dusti, I'm so sorry for your loss. Sending prayers for you and your family. Peace, Lisa Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted October 6, 2007 Share Posted October 6, 2007 Dusti-- Very sorry for your loss. Rich Quote Link to comment Share on other sites More sharing options...
DGB Posted October 7, 2007 Author Share Posted October 7, 2007 Thanks for all your support. I edited the parts about my sister not being available daily, etc. as I don't want my sister thinking I'm back stabbing her, talking about her behind her back. She is sensitive about that (God I better be careful..was that statement backstabbing, lol.) She got really upset with me for venting to our dad over the phone... I should have known better than to talk/vent to anybody where my sister could hear or hear about it. Stupid me should have just called my best friend out of ear shot... Anyway, after being yelled at and almost disowned by my sister we made up. I have to remember to NOT say things that could in any possible way hurt or offend her...she does not forget and brought up all kinds of stuff wherein she felt like I'd wronged, hurt, disrespected her over the last 20+ years... That's a whole other story...Just know for all my alleged wrongs, I helped her without expectation financially and physically and emotionally more times than I can remember! I was warned that if I ever said or did anything "like that" again, that she'd walk away forever, etc... On a happier note, the family decided to go to Disneyland for Xmas so we could have a reunion in lieu of a funeral...Mom didn't want a funeral. All the family and friends are invited...they'll have to pay their own way and we'll just meet there! Quote Link to comment Share on other sites More sharing options...
DGB Posted October 7, 2007 Author Share Posted October 7, 2007 Just read a lot of your bio's and recognized all the meds and ailments. Will continue praying for comfort and health and relief for all of you. I am soooo glad I found all of you. Hugs! Quote Link to comment Share on other sites More sharing options...
ztweb Posted October 9, 2007 Share Posted October 9, 2007 Welcome. Please know you have my prayers. Jen Quote Link to comment Share on other sites More sharing options...
DGB Posted October 9, 2007 Author Share Posted October 9, 2007 Thanks Jen. Your dad is amazing! This is a bit off lung cancer topic but I figured some of you might have info for me to pass on. Dear friend has melanoma (knee) that has spread some inside. She'll have lymph in leg (I didn't know there were lymph in legs, I am so ignorant!) removed soon. She could really use a great group for it for support....Any links? Quote Link to comment Share on other sites More sharing options...
barbara5452 Posted October 9, 2007 Share Posted October 9, 2007 Dusti, so sorry for your loss. Quilt or regrets are something you should not have. Sounds like you did all you we able to do. God Bless... Quote Link to comment Share on other sites More sharing options...
DGB Posted October 10, 2007 Author Share Posted October 10, 2007 Thanks everybody. Today was the first day my husband went back to work and I had to go back to the usual mom things...Didn't cry when I dropped daughter at school like I thought I would. Went and had coffee with a girlfriend and actually smiled for a change. It hurts...like last night at dinner I saw an ambulance go by toward the hospital that was our second home for the last 4 years (COPD for 4 yrs...discovered cancer 6 mo ago)... We were so used to her being "gone" for a few days in hospital then coming home...This time, she's not coming home...It becomes so evident by the fact that my phone doesn't ring 3x while I'm out with friends with my mom needing something... Quote Link to comment Share on other sites More sharing options...
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