onlychild*

Thank you all so much for your support! It really means A LOT to me. I did try to do things on my own this week to honor my mom. Worked on the old 1910 house and ate a burger from her favorite place (I used to be a vegetarian so this is a big HONOR - hahaha). I volunteered as usual at a women's shelter and did facepainting for some kids at the shelter. Randy, I even had a good cry/babble under the stars too. Ry, that was no tangent! I'm so sorry you lost your husband and in turn went through that with your friends. Thank you for sharing your experience and reassuring me. Now that the anniversary has passed, like a storm, I feel more like my old self and will just keep working on building relationships with people who are worth it and not make huge efforts for the ones that aren't (because I am sure it's not just me, I am sure they are probably like this with everyone). I will try to plan something in advance for the 5 year anniversary, maybe send out a formal invite to 2 of my mom's friends for a picnic in the park to honor my mom or a walk through the museum. Thank you all again. And now that I remember my login info I will try to check-in more often. I hope I can be of some support to others too. xox k

Mom died 4 years ago last night. Although I usually can keep a smile on my face and my chin-up, today I just needed somewhere welcoming and understanding to go, to openly & honestly grieve. Am so grateful you are here! These past few days hit me really hard... My mom was an only child and I am too, and thus there is no one else to remember her with today. I would love for today to be about having a picnic, eating burgers (Mom loved burgers!), sharing memories of Mom and having a laugh, cry and hugs. But, sadly, I am the only one who remembers her. <> Mom was a quiet, shy person and had few friends, but she always remembered people's birthdays, anniversaries and sent gifts during the holidays and called people for no reason just to see how they were doing. But those friends only called her when they needed something (even when she was dying the friends that did email her said how much they would miss her "always being there when they needed something", but never said anything more). And why don't I ask my friends for support? My friends... well I just realized how alike I am to my mom. <> AND my friends are young and never lost anyone (Mom died when I was 29). My epiphany: I was stuck in the house for the past 6+ months in a wheelchair (I am now luckily able to leave the house - am so grateful! And SO lucky!) the only time I heard from anyone was when they wanted me to take care of their kids, dogs|cats and/or house, and even my 'closest' friend got upset at me for being in a wheelchair at an "inconvenient time" for her. Note:I was not in a wheelchair by choice, trust me. Honestly, I am still in utter disbelief and shock - if it had been anyone, I would've brought groceries, called to have a good conversation, sent cards and silly things, flowers, brought movies - I would've been there to offer any kind of support. In fact I have done so many times, in good and bad during; break-ups, colds, birth of kids... I even cared for my mom's out-of-state friend for 2 weeks when no one else, not even her own daughter would take off work to care for her. I did it because I cared, and I didn't even think twice about it. Que sera... So... Writing this I realize, that I guess what I am saying is this anniversary has become a time of major reflection on my mom's life and what her worth was/is and also mine. It makes me so sad to think that someone so loving existed, that was there for others whenever they wanted, on their terms, always with a smile & never a complaint... and now, it's like she never existed. And I am just so selfishly sad to not have any family or friends to remember her with, or anyone to even remember me on this difficult day. <> When you lost someone, were you alone too? What did you/do you do on 'anniversaries? Have you been able to build more unconditional love & support? Again, I am SO grateful for everyone here, for everyone being so open about their experiences, thank you for letting me have my moment <> and for listening and understanding. pffft! I said it all. <> Much love to everyone on this journey. xox k

Mom died 4 years ago last night. Although I usually can keep a smile on my face and my chin-up, today I just needed somewhere welcoming and understanding to go, to openly & honestly grieve. Am so grateful you are here! These past few days hit me really hard... My mom was an only child and I am too, and thus there is no one else to remember her with today. I would love for today to be about having a picnic, eating burgers (Mom loved burgers!), sharing memories of Mom and having a laugh, cry and hugs. But, sadly, I am the only one who remembers her. <> Mom was a quiet, shy person and had few friends, but she always remembered people's birthdays, anniversaries and sent gifts during the holidays and called people for no reason just to see how they were doing. But those friends only called her when they needed something (even when she was dying the friends that did email her said how much they would miss her "always being there when they needed something", but never said anything more). And why don't I ask my friends for support? My friends... well I just realized how alike I am to my mom. <> AND my friends are young and never lost anyone (Mom died when I was 29). My epiphany: I was stuck in the house for the past 6+ months in a wheelchair (I am now luckily able to leave the house - am so grateful! And SO lucky!) the only time I heard from anyone was when they wanted me to take care of their kids, dogs|cats and/or house, and even my 'closest' friend got upset at me for being in a wheelchair at an "inconvenient time" for her. Note:I was not in a wheelchair by choice, trust me. Honestly, I am still in utter disbelief and shock - if it had been anyone, I would've brought groceries, called to have a good conversation, sent cards and silly things, flowers, brought movies - I would've been there to offer any kind of support. In fact I have done so many times, in good and bad during; break-ups, colds, birth of kids... I even cared for my mom's out-of-state friend for 2 weeks when no one else, not even her own daughter would take off work to care for her. I did it because I cared, and I didn't even think twice about it. Que sera... So... Writing this I realize, that I guess what I am saying is this anniversary has become a time of major reflection on my mom's life and what her worth was/is and also mine. It makes me so sad to think that someone so loving existed, that was there for others whenever they wanted, on their terms, always with a smile & never a complaint... and now, it's like she never existed. And I am just so selfishly sad to not have any family or friends to remember her with, or anyone to even remember me on this difficult day. <> When you lost someone, were you alone too? What did you/do you do on 'anniversaries? Have you been able to build more unconditional love & support? Again, I am SO grateful for everyone here, for everyone being so open about their experiences, thank you for letting me have my moment <> and for listening and understanding. pffft! I said it all. <> Much love to everyone on this journey. xox k

Thank you all for your lovely words... it has helped to know others out there understand and are sending warm thoughts. Wishing everyone the best, hopefully someday I can give back what I have received from you all. Many thanks again! k.

I am trying to get everything ready for mom's funeral tomorrow and just needed a place to go... which is here. I can't believe in a few hours she will have been gone for a year. It still feels like only a few days ago. I am nervous about the funeral and if I did everything right for her... it's a bit unorthodox to have a funeral 1 year later, but then again my mom never followed the rules. I hope the service will bring a sense of closure for her friends. For me, I am not sure what to expect... I just miss my mom and wish she were here and wish she could hear me. Thank you for being there for me and listening. Warmest regards to everyone taking care of a loved one and having lost one... my heart goes out to you. Kate

I know, I wonder when or if it gets better as well. It was so hard to face my first birthday without mom. Now with Mother's Day coming up I have no idea what to do without mom. I'm no longer anyone's 'boo' or 'kate-o.' Am thinking of you! If I have any lightbulb moments that give me hope or help will let you know. <> warmest wishes, Kate

I can completely relate to what you have written. My mom died 9 months ago tomorrow ... I turned 30 in January and mom's birthday was in March... not to mention all the holidays... it was very hard to face those dates. Am thinking of you. Warmest wishes, Kate

"Deserter" by Matthew Dear "... You sound deserted... Lost and alone...Don't be afraid. This is what you have been saving for. Everything that you have done, nothing seems to be what it's worth..." I had never heard the song before. It came on the radio as I was driving home at 5am on the foggy summer night after seeing mom's last breath. Everything looked so different. Was very surreal. Note: The record label for this album is "Ghostly International".

Sarah I am SO sorry to read about your mum. It breaks my heart. My mom also died within 50 days of diagnosis. She was 62 and I 29, this was 6 months ago. I still have not yet had a funeral for her. Your mum's decline was so fast yet it wasn't the shock of loosing someone apparently healthy to a sudden car accident, yet it wasn't a slow decline of 18 months giving you and her some more time to check out all treatments and to maybe take a last vacation, etc. I don't know if you feel this way or not but it's like being in a kind of limbo world. It seems so unique to this disease that one day someone is fine and then 40, 50, 60 days later, after a life changing diagnosis, they are gone. It's so much to take in and to come to terms with. My heart goes out to you. Please let me know if there is anything I can do. Feel free to e-mail me if you ever need to talk... and if your mind is like mine and keeps you up most nights I am here to listen. Warmest wishes x Kate

I am so sorry to hear about what you and your mom are going through. It must all seem so unreal, so painfully unreal. I agree with others suggestions, if your mom is up for getting a second opinion that would be good. Also doing things to keep her interested in life and to keep her energy up as much as possible helps. For a while I thought my mom was getting better, she did to as well! She had much more energy and started to regain some weight. Someone on this forum gave me great reassurance and advice that I am always thankful for. Right after the Hospice nurse told my mom she thinks mom had 6 weeks left, which shocked us, I was encouraged to just remind my mom how much I love her each day, every chance I got and I worked hard to make sure she still felt independent as much as possible even in her quickly fading condition. Basically live your life and use this time with no regrets. Leave nothing unsaid, so should she pass away you will not have those horrid regrets filling your mind. And should she make a wonderful recovery she can then tease you about how much love you surrounded her with, so much so it almost annoyed her. Children are allowed to still drive there parents crazy. Again i am so sorry you are going through this, it breaks my heart. Please let me know if there is anything I can do, if you ever need to chat I am here. Warmest wishes x Kate

Steph, I am so very sorry about loosing your mom so quickly. There are no words that I can think to describe it... it's just devastating. Please know we are thinking of you. You did such a wonderful job with her, you are amazing. If you ever need someone to just talk to please feel free to contact me. I too am up most evenings thinking about my mom and her quick illness and almost unexpected death, so can relate. My heart goes out to you. Warm wishes x Kate

Sorry, I haven't been here for a while... I just wanted to say thank you for all of your kindness and support. Right now I REALLY needed to read that I was a good daughter to her. So thank you for reassuring me! I wish I could have done more for her and feel some guilt/regret. BUT I logically know the "what if's" do no good and I unconditionally loved her and without question did everything I could for her. As she told me, I was the love of her life and thus far she has been the same for me. I read part of her sketchbook/journal and she wrote she was scared of dying alone (I think over the years she carried regret for not being there when her parents died). Well, I think she died knowing (or I hop she dide) that she was not alone, in fact I basically never left her side (the number of times I almost wet my pants!). In fact I think she held on for days because I kept "waking" her. Oops! One of the last things she spoke before she went unresponsive was when I was groveling over her, crying, telling her I loved her, asking her to give me the thumbs up if she was comfortable, basically being a sputtering idiot and she said "Kate, just sleep". It made me laugh and I apologized and said I would let her sleep, she gave me the thumbs up sign for the last time. And she certainly slept... for days! Anyways, I am rambling now. Thanks for letting me talk about her and for being so supportive. All my best to you all! Kate

I have been wondering how you are. Not sure if this helps but I became severely ill 1 day after mom died and found out I need surgery. The worst part of it is not the pain, or finding out I should have taken care of it sooner (I couldn't, I had to take care of her!) but she and I have always hated hospitals and needles and now I have to go alone without her comfort or understanding. Just like you are going to have surgery without your husband there. There are no words to express how sorry I am for what you are facing right now... anniversaries, surgery, etc... But I am thinking of you. (((hugs))) Kate

What a little darling Xaiver is! Is understandable to see how happy and sad you can be at the same time. You've been through A LOT! I miss my mom too, and wonder if she hears me. I just don't feel her around and it makes me sad. The day after she died I found out I have to have surgery... right away I wanted to talk to her, and ONLY her. I even sent an e-mail to her. Sorry this may not be much help, but I am thinking of you. (((hugs))) Kate

Hello Mary, My mom was so stubborn and hated the taste of anything! If I even mentioned that something was to help her gain weight or was a vitamin she would refuse to eat it. Someone recommended Polycose to me on this site. I hid it in her food and drinks. She gained weight and got some energy back! She was so excited as her biggest complaints were feeling weak. I finally told her what I had been doing... hiding Polycose, Flaxseed Oil, Vit C and A in food and drinks, and she supported it and had me buy more. Polycose is nongluten. Also Juven is supposed to help counter cachexia. I have extras that I received just after mom died if you would like me to send them to you - if the oncologist approves of course. Unfortunately there was a complication, not related to the food, that led to her being unable to eat/drink and then she died a week later. I ONLY wish I had started hiding all the nutrients in her food sooner or hired a nutritionist - as she just hated being weak and that wore down on her having hope (even though her blood work was all good etc). If your mom has an oncologist (mine didn't, she refused all treatment) double check with them to see what would be best to counter cahexia/help gain weight. If they approve of certain supplements you can try one at a time and hide them in foods/drinks and watch your mom to see how she reacts to them. I wish you all the best in this tough time! Warmest regards, Kate

I'm so sorry you are going through this. I really struggled trying to balance mom and work. Things started to fall apart... what hurt more than anything was the lack of empathy, understanding at work. Mom has always been so important to me in my life and I wanted to spend time with her and then I REALLY needed to spend time with her and take care of her, so I took a FMLA from work. It was the best thing. I tried to maintain some freelance work on the side to keep some money coming in but when it came down to it I cancelled any extras we didn't need and reorganized my whole life and budget and moved in with mom. I miss my mom so much and only regret I didn't kick my work to the wayside sooner - I didn't know she'd be gone in less then 3 mos. Not sure if this helps but I understand that struggle and am just so sorry anyone has to go through that. I have friends in UK whose employers didn't bat an eye when they needed time off, whether they were sick, hung over or needed to care for a family member or friend. Am thinking of you and wish you all the best! Warmest regards, Kate

Hello Peachy, I am so sorry you are going through this. But it sounds like you are active and able to travel and visit friends and family which is great! From a caregiver/daughters point of view I wish my mom would have sought or allowed help sooner or treatment. I miss her. At same time I respected her and also understood how independent and stubborn she was - I loved her for it. She was a spitfire even if her body was not. And she did not suffer. I never pressured her into treatment or anything. I did everything I could to help her feel strong and independent as possible even in a wheelchair. Whereas I think she would have possibly suffered if she had treatment after letting the disease progress as far along as it did. But you are much physically stronger than my mom and have so much energy and hope. If your oncologist thinks treatment would be good for you, you could talk with them about stopping if it starts to effect the quality of your life (although there may be some rough days with treatment). My mom's friend was a very active woman who ended up having treatment and a lung transplant and feels great now! Point is everyone is different, in mind, body and soul. Trust your instincts. Sorry not sure if this helps or not. It sounds like you are on the right path, seeking help, having fun, being active, etc. I wish you all the best!!! Kate

My Mom is gone. She passed as I watched the horror of the 35W Bridge Collapse unfold. Am so devastated but feel such relief seeing her pass very quietly and peacefully (even the nurses were amazed). She went so fast. I feel some guilt as last night was the first time I felt at ease/peace enough to fall asleep in 5+ days. But I slept next to her on a cot and woke up every 30 mins or so to kiss her cheek, smooth her hair and tell her that I was still here and loved her more than anything. The nurses at the 'Little Hospice' were amazing. They gave me long hugs and when I felt ready to leave they made me some home cooked Shepard's Pie and sat with me at the dining room table to hear stories about my Mom. They were amazed at the strength of her heart, strength they had never seen in their 10 years at that hospice. They had prepared me for her to only have a few hours on Monday when she became unresponsive, not even 24 hours since she was traumatically admitted into the hospice (was a very terrifying ride over in an ambulance, she was in shock and was drooling and staring off into the distance complete folded over on herself). But once she was there she just kept going and going. The many times she seemed she would slip away as I spoke to her a flood of warmth would go through her hands, she'd take a deep sigh and she'd relax. So maybe it took me giving her a break by resting that allowed her to go. So now life must begin again... will try to give myself some time. I am scared to go home to sort out all the medical equipment and see that she is not there. I am so used to caring for her. I keep waking up thinking I hear her call my name and sitting up to check that she is ok (I have been sleeping on the floor next to her for months now). I still feel her strong pulse/heart beat in my hand. I wanted to thank you all for your support and kind words - it has gotten me through this. I hope the strength my mom and I have had can be of support to someone some day as you all have been to me. Much love, Kate

Thank you all so much for your support. It is very much appreciated. I am currently sitting next to my mom who is dying, is expected only to have a few hours left. I am devastated and have periods of major "what if's" running through my head. But we are not alone now. We arrived last night by ambulance transport to a hospice which is amazing. Very compassionate and caring. Is a house converted into a hospice for 8 patients, but they have 31 nurses and the family can stay the night and get home cooked meals. Am so sad we didn't have at least a few days to enjoy this place together as mother and daughter, to relax and to say good byes. Mom has an amazing view of the garden. But I think she felt safe and thus started to shut down today around 2pm. I keep telling her I love her and am here. Yesterday I think I annoyed her by saying it too much and waking her. But today in her deepest sleep before shutting down I cried and said "You are the love of my life, my heart" and she opened her eyes wide and shook her hand, pointing her finger at me and warbled the words "YOU MINE!" The very last response I had from her was when I kissed her cheek and said I loved her and was just going to step out to go to the bathroom, she opened and then closed her eyes, pressed her fingers to her lips and then touched my cheek and smiled. It was the sweetest gentlest smile. It was something she had never done. Am scared when this is over and go home to the empty house after caring for her 24/7 for the past 2 months or so... Many thanks again.

Am so scared. Mom is in a very bad way... is so horrid - only 2 weeks ago she had gotten some energy back and was even walking a few steps and scooted herself around in a wheelchair a few times to my surprise! She has been going downhill since the choking incident the Sunday before last - that was scary. Hospice didn't help then when I called and today when I called hospice again they wouldn't come out either. She is suffering. Mom and I are all alone. Why can't I get help from hospice, why won't they come out the only 2 times I called for help? I really thought she was going to die a bad death yesterday. She was so disoriented, agitated, wasn't making sense, couldn't form words and couldn't stand up etc...I have to lift her onto the commode and change her diapers, administer her morphine and other meds, etc... I am up with her now it's about 4 am. I keep putting cold cloths on her to keep her cool, adjusting the fans to circulate air and telling her it will be ok. She wants it to be all ok. I'm so scared. This is an absolute nightmare. I keep thinking it really is a dream, especially when I stare out the window into night, everything is so surreal. Even I struggle to breath at night. I was hoping mom and I could come to terms with her death, that it would be a peaceful transition - but it is nothing such. She is breathing like a goldfish out of water, gulping for air now. She looks at me with glassy frightened eyes, sometimes seeing me and gaining hope and other times looking straight through me, full of fear. All I can do is tell her to breath slowly, that she is doing an amazing job, that I love her - she gives me the "thumbs Up" as if my words of reassurance really do help her. Thanks for letting me get this out, I really don't know what to do. Is it normal to be so frightened? Thank you SO much for your support - I can't even express how much it means.

I'm so so so sorry. What a terrible night! Is so painfully gut wrenching to watch loved ones go through all of this... so many ups and DOWNS. My thoughts are with you and your family. Wish there was something I could do. Many hugs and warm thoughts. Kate

Can I hire you?! Yes, there is a drastic need. I have been in tears daily over the rapid weight loss my mom has experienced over the past few months. She is in hospice - but she does not want to die and hates feeling weak. No one has offered any nutritional advice and when I asked the doctor and nurses none of them had any recommendations. None of them even knew what cachexia was. If it weren't for LCSC I don't know where we would be now! Mom has regained some energy (she can scoot herself around in a wheelchair now) and even looks to be putting on some weight. I have been adding Flaxseed Oil and Vit A to her food and mixing in Polycose and EmergenC in her drinks, etc. I know there are some more hardcore medical nutritional supplements for counteracting cachexia but we have not gone that route yet. Did you find any nutritional supplement or foods particularly helpful for Karen that you wish you would have tried sooner? Thanks for your post - I think you are on to something that is much needed as many people out there wasting away who may not need to. Warmest regards, Kate

Oh forgot - you may have wondered what mom said to me. She said: "You are my Yo Yo Ma, the celloist, who can get me to rise and face anything and enjoy life, even lead the orchestra - you are the love of my life." <> On a side note she says the bath aide is a giant kettle drum that stomps in and disrupts everything for her... I laughed hard! And said we need to work on that so she is more comfortable.

Thank you ALL so so so much for your advice and just taking the time to read and respond. It really helps! Mom and I did have a brief talk now that the rushing to get gifts together and a good-bye e-mail to her friends has been completed. And she seemed to be doing a lot better, she even walked several feet upright and scooted herself around in the wheelchair without help from me! When talking to her she admitted that she is very frightened by what the nurse said about dying in a few weeks (would be this week!) as she doesn't feel it is her time and she wishes she could just get better. Our regular nurse returned this week and says mom looks great and is not dying right now - in fact she wishes mom would see an oncologist and get a second opinion as she worries that the doctor just pushed mom off to hospice to die because mom looked so weak and doesn't have insurance. I keep trying to reassure my mom she is doing great and not to be so hard on herself and have mentioned a few times that the hospice nurse gave me a name of a good doctor to talk to if she wants to try to review some options for getting better. Thanks again for your support! It is a better week - but we all have ups and downs (and really bad downs) don't we? What a rollercoaster ride!

I agree, talk it out with a few doctors and way out the options, pros/cons. My mom only has one tumor - I wish she would go have it removed as I have read about good success rates removing a single tumor. If I was in that 'boat' myself I would seriously consider it too, especially being so young. Best wishes to you! Keep us posted! Maybe I can get my mom to read your message and it will inspire her to fight for her life. Warmest regards, Kate