onlychild*

Hello, Am so scared and frightened by all of this. I can't sleep. I hate seeing my independent, strong, stubborn mom deteriorate right in front of my eyes. Since the nurse told my mom she thinks mom only has a few weeks left (just as my mom was getting better! Not good news for the spirits) mom has gone downhill... last night I couldn't tell if she was still breathing. I touched her foot and it was stone cold. I was so scared. I shook her foot and she woke, confused at what I was doing. Today the little bit she was up and awake she wanted me to gather little presents to send off to her friends as a good bye. It was heart breaking. I tried to be strong for her. But then I started to feel very bad... as here she was awake for just a short time devoting all her energy to friends that are not here with her 24/7 (they're not here at all - they're in other states), who don't sleep on the floor next to her to be there every moment she should need water, more air or help with toileting or to listen to her fears or to reassure her that she is doing well. No one else is here. What really set me off and got me thinking about all this was she had a children's book she wanted me to wrap to send to her friend for her friend to give to her first grandchild. Her friend is not expecting any grandkids! Just as expected from an only child I thought: "What about me? Why don't you have a children's book to give to me for your own grandkid that you may have someday? Why a present for someone else's non-existent grandchild?" Since this is my mom's wish and possibly her last few weeks or days I did not risk asking this question or breaking down in tears in front of her for fear of ruining her waking moment. As I want her to have some peace and happiness and feel supported by me. I'm just selfishly scared that she won't be able to take the time to say good bye to me or have anything for me to hold onto as a reminder of her love for me or anything for any kids I should have. <> Thanks for letting me babble. I just really needed to say something and be heard. Feel so scared and alone. My warmest regards to everyone* Kate

Hello Donna, Am so sorry to read the news of your mom's diagnosis. My mom is just 62yrs and was just diagnosed on 5/25 - she has decided to not seek treatment as well. It looks like your mom did seek different options first which is great. But it can still be hard when you love someone and want them to be around (to be the same as they have always been) but at same time you love them so much you want them to have best quality of living even if that means less time. My mom did not have an appetite for a while which scared me, and she kept rapidly loosing weight... cachexia. The hospice nurse gave her 2 weeks to live. But mom said she wants to live, she feels cheated and she wants to be better as she hates being weak. Alas, my mom is still stubborn and won't eat good foods to help her gain strength, such as veggies, fruits or proteins. And she hates health shakes/drinks like Boost, Ensure, Instant Carnation, Enlive!. But I recommend trying these as your mom may not be as stubborn as mine (let's hope!). Since my mom will only eat a 1/2 of a small Mc.D burger a day and sometimes some applesauce one thing I found was to hide Organic Flaxseed Oil in her burger. Is very good for the heart (and I think can help reduce/prevent edema) and adds extra 45 calories per teaspoon. Also Vit A, C and E have all been recommended for pulmonary/cancer issues. Mom sometimes will drink the Orange-Orange Vitamin Water from Glaceau and I add a pack of Emergen-C Super Orange to it for extra Vit C and nutrients. She always says she feels a bit better after having some of it. Sometimes I add Polycose to some applesauce to help give her a few extra calories as well. I am no doctor, so check with your mom's nurse/doctor first to make sure no alternative measures (extra vitamins, certain foods, etc) interact badly with your mom's specific condition. I have enclosed a few links below that have helped me some. I too am also looking for other alternatives (especially ones you can hide in foods/drinks for those stubborn parents that only like Mc.D's!) so I look forward to reading others responses. * http://www.aicr.org/site/PageServer?pag ... foods_home * http://www.curezone.com/foods/fatspercent.asp * http://www.cancure.org/cancer_fighting_foods.htm * http://www.metromedicalonline.com (currently has cheapest offers on Enlive, Polycose and Ensure. Can buy a case or individual) * http://www.prevention.com/topic/0,5768, ... -0,00.html * http://www.lungcanceralliance.org/facin ... ments.html * http://www.drugs.com/cg/high-protein-hi ... -diet.html * http://www.caregiver.org/caregiver/jsp/ ... nodeid=344 * http://www.lungusa.org/site/pp.asp?c=dvLUK9O0E&b=22547 * http://www.hospicefoundation.org/hospiceInfo/faq.asp My heart goes out to you and your family. All the best wishes* Kind regards, Kate

Sitting here with my mom as she sleeps I want to scream, cry, sputter... something. But all I can do is be still as she finds comfort sleeping when I am sitting here quietly. My heart goes out to you as you sit next to your husband and care for him. Wish I could do something to make it all better, I hope you find some comfort knowing you are thought of and are not alone. And allow yourself to be angry, with no facade - smash plates (what a great idea!), write a nasty letter and then burn it or flush it, rant out loud... anything. You deserve it! You are not crazy, never doubt that. You just love someone very very much. ------------^@

Wow! Thank you! Thank you! Thank you, all. Is very nice to hear reassuring words and have the support. I just feel heartbroken that so many people are going through such difficult times - I wish there was something I could do to help. I hope I can be able to offer advice, resources, reassurance someday. Right now this is all so new. I will certainly try Skandyshake and Polycose. I just won't tell mom and see if she detects it - was pretty funny the look she made when she took a sip of the Frappacino with Boost in it. Is good thing I bought two Fraps for just in case!. I think the hospice nurses think I am crazy asking them questions about breathing techniques and nutritional advice. They only recommend IV or feeding tube and morphine - but mom is still my mom (albeit very thin)and very concious and very hungry for Mc.D's, and ice cream etc... her stomach just fills up fast so we do little meals throughout the day. If my mom wasn't hungry or didn't complain about hating feeling so weak (she really has a desire to be able to walk around a bit again) I wouldn't be trying to find supplements. Must run to pick up some McD's kids hamburgers for her. Many thanks again! Best wishes, k

Thank you all so much for your advice and kind words! I can't express how much I appreciate it... it has been so scary and lonely the past few weeks. I too don't feel comfortable with this diagnosis as it feels like a brush off. I have even tried talking with the doctor on the phone about having my mom's chest x-ray reviewed by a pulmonary specialist or someone else,and asked about pulmonary exercises and nutritional advice, but she says that further diagnostic tests would need to be run before a pulmonary specialist would even review my mom's case. And since my mom is declining to be admitted to hospital this cannot be done, thus she recommends hospice care. I am very upset about this as we were not even given options, nor did the doctor even attempt to encourage my mom to get another opinion or explain that many people with 1 tumor on the lung have lived healthy lives, etc. She didn't even explain that a CT scan can be done in a non-invasive way (no needles). She took one look at my mom and gave 15 mins of her time and that was that. The MN Hennepin Cty Social Worker, the Hospice Social Worker and I tried to talk with mom about other options and that she should seek another opinion but my mom says the Urgent Care doctor was horrible and now this doctor gave her a "death sentence" and she doesn't have the energy or money to seek another opinion. Which it is horrific and very hard on her to get her from point A to B even with a wheelchair because she is so weak and her breathing so labored. I will give her a few more days after she has eaten more and hopefully gained some more energy before I approach her on this subject again. I am hoping when she reads this message board that it will give her some hope or make her think more about it. I will find the Carnation Breakfast and check another co-op on weight gain formulas and check out the hospice website. Maybe I will try to contact U of M or other places outside of this provider and see if they can recommend options. Sorry so long winded, I just don't have anyone to talk to as this hospice doesn't provide family resources or counseling and I am trying to focus all my energy on keeping my mom comfortable - many many thanks again for your support.

Hello, Need some advice/words of wisdom. My mom is only just 62 and only a week ago, or maybe 2 weeks now, did she finally go to a doctor after all my months of pleading (she is very stubborn, independent and hasn't seen a doctor for 10+ yrs). The doctor told her and I that she most likely has lung cancer due to a large tumor taking up 50% of her lung. The doctor right away referred us to Home Hospice Care as my mom didn't want any further tests and has no insurance. It has been very unnerving and scary. Am not even sure yet what hospice is supposed to do. I began leave from work over a month ago when she started to not be able to get around to help her with toileting, feeding, drinking, household jobs, etc. The hospice nurse has been over twice for about 15mins and keeps encouraging my mom to take morphine, but my mom is lucky right now as she is not in pain. Is this normal to be encouraged to take morphine when not experiencing pain? Does anyone have preferences to Home Hospice Care over Hospice Care at a Hospital, etc? Also, any recommendations on foods, nutrients or medicines to help my mom gain weight back and some strength, she hates being weak and it is very scary to see her so thin from cachexia (right now I hide Flaxseed Oil in the 1/2 of a small McD hamburger she craves a day and Vit C in some juice she sips on - she detests Boost and Ensure and detected it right away in her Frappacino). Any advice for my Mom and I? Many many thanks as I feel quite lost and overwhelmed with all of this being so new and my mom and I not having any other family. She's all that I have. Thank you.

I think this topic is a wonderful idea! My mom is only just 62 and only a week ago, or maybe 2 weeks now, did she finally go to a doctor after all my pleading. We were told she most likely has lung cancer due to a large tumor taking up 50% of her lung. The doctor right away referred us to Home Hospice Care as my mom turned down treatment and has no insurance. It has been very unnerving and scary. Am not even sure yet what hospice is supposed to do as I still help her with toileting, feeding, drinking, household jobs, etc. The hospice nurse has been over twice for about 15mins and keeps encouraging my mom to take morphine, but my mom is lucky right now as she is not in pain. Is this normal to be encouraged to take morphine when not experiencing pain? Does anyone have preferences to Home Hospice Care over Hospice Care at a Hospital, etc? Any advice for my Mom and I? Many many thanks as I feel quite lost with all of this being so new and my mom and I not having any other family. She's all that I have. Thank you.