my mom/my best friend

rachel26 · Posted: Thu Oct 11, 2007 7:50 pm Post subject: my mom/my best friend

Hello everyone, I just discovered this website. I wish I would have found it earlier it would have been very helpful. I just lost my mom to stage four pancreatic cancer which had spread to her liver, lungs and bones. She was diagnosed with this horrible disease in june, she recently passed away in september. I was her primary care giver, she lived with me and I was with her every step of the way. I was there with her when she passed away. I had so many questions during this time, which most of them went unanswered. I know what the caregivers are going through, and I just wanted to post this message to let anyone know, if I can answer any question you might have, please feel free to ask.

brainman · Posted: Fri Oct 12, 2007 12:39 am Post subject: Re: my mom/my best friend

Rachel, I am so sorry about your mother's death and very sorry that you did not find this site earlier.

My father died of complications due to leukemia in Sept 2006. I lived with him and was his primary care provider. I walked with him literally every step of the way since he could not walk without assistance for much of the last several years of his life due to a hip fracture followed by nerve damage to his right leg.

I am glad that you have joined us. I find that helping others is a way for me to honor my parents and remain productive as well.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

pwilliams8128 · Posted: Wed Oct 17, 2007 2:17 pm Post subject: This must be Fate

I am sorry to hear about your mother, you have my deepest sympathy. I am retiring from the U.S. Navy in Feb 2008. Every deployment that I have been on, my mom stepped in and helped my husband with the kids. Almost every mail call while deployed, I could expect something from my mom. With my upcoming retirement, we purchased a home in Fort Worth, Tx, closer to my mom in New orleans. Then Katrina hit N.O. and we were blessed to have my mom come and stay with us. Her house still is not repaired. My mother is also my best friend, who was diagnosed about two months ago with stage four pancreatic cancer. My mother is now 80 years young and up until three months ago, she was never sick or took any meds. Now, I see her with this constant pain, loss of appetite, rapid weight loss and swollen ankles and the latest one is a noticeable forgetfullness. I don't have any particular questions, I just would like more info on what you think I should know or look out for. I do have three sisters that still live in N.O, they come out to see my mom every other weekend. So any advice given will be shared with my sisters.
_________________
Patricia Williams

skychief · New User Joined: 17 Oct 2007 Posts: 5

Rachel26, I am so very sorry about your loss. I can only imagine how difficult it was for you. I'm going through some difficult times right now, with an identical twin who has Stage IV Pancreatic Cancer which has spread to the liver. Recent scan showed continued growth after 5 months of weekly Chemo and the development of fluid in the abomen and pleura. I've read on-line this is often the sign of worsening conditions. My brother and his wife are still very optimistic about the future and I (he calls me the evil twin)wonder about the need to line up hospice care.
Did you have hospice for your mom? What were the issues that need to be addressed? I know my brother would like to stay at home, but I worry
about his wife being comfortable in the house when he is gone. Do you have any commments? And, anyone else who reads this that might provide some insight and suggestions are welcome to reply. Thank You.

LINDA GALE · Regular Joined: 11 Oct 2007 Posts: 13

Rachel,

I am so sorry to hear about your mom. I am my husbands primary caregiver who has pancreatic cancer that has spread to the lungs liver colon and stomach. They have stopped the chemo because it is not working. Please tell me what i can expect in what time he has left. I am trying to keep him as comfortable as possible as well as trying to console my 13 year old son. Any thing you can tell me will be most helpful. You're in my prayers.

Linda Gale

rachel26 · Posted: Fri Oct 19, 2007 9:10 pm Post subject: my mom/my best friend

First of all, let me tell you all how very sorry I am to hear about your loved ones. I know all the emotions you are feeling. The worst feeling I experienced was being helpless, I wanted to do everything in my power to help mom, but I knew I couldn't. My mom was 65 years old when she passed away. She was the most energetic, happy person I ever knew. Even though she had been through some tough times, she always stayed strong. I never thought anything could get her down.
I hope I can answer some of your questions, I know it would've been very helpful to have someone answer mine.

pwilliams8128:
I know how you must feel, my mom was my rock as well. I depended on her for everything. Mom was diagnosed in June of this year. The cancer had spread to her liver, lungs and bones. Later, it had also spread to her brain, which not only caused mom to be forgetful, but she also lost her sight. She was also in constant pain and had no appetite, she also had a very hard time swallowing anything, I had to blend chicken noodle soup as thin as water, so she could drink it, that was the only food she could tolerate. Mom became completely bedfast by the end of July. I could feel knots popping up all over her back, stomach and neck, which was the cancer, it had pretty much spread all over her. Toward the end, mom didn't even know who any of her family was, and she barely responded to anything. She also completely stopped wanting anything to eat or drink. Please tell your sisters to try to spend as much time as they can with your mom, everyday is precious at this point. Mom died Sept. 21st, which was roughly three months after being diagnosed, hopefully you will have more time with your mother, but remember that this disease progresses rapidly. Just cherish the time you have.

Skychief:
I'm sorry about your brother. Yes, the build up of fluid does sound like a worsening condition, and if the cancer is continuing to grow, the chemo probably is just doing him more harm than good. Mom only took two treatments of chemo, and they weakened her so bad that she decided to stop them. That's when we decided to get hospice care for mom. It was a tremendous help, becayse then, she didn't have to go back and forth to the doctor so much, they gave her all the medications she needed at home. Does your brother and his wife live alone? I ask this because, if indeed he does want to stay home, I don't think his wife should be alone alot after his passing. Mom died at my house, and it has been difficult for me, I don't even go into the room where she died at all. My husband leaves for work at 5 a.m. and at that time, I am left alone (except for my two year old) and it is extremely hard for me. Maybe you all should sit down and talk it over to see what is best for you.

Linda Gale:
I really explained alot about what to expect to pwilliams(at the top of the page). Really, the only thing you can do is keep him as comfortable as you possibly can. Even though, I know, you would like for your husband to get better and be hisself again. As I said, helplessness is the worst feeling in the world. But the main thing we can do is trust in God's plan, we may not always understand it, but never lose trust in it. I really worry about your son, I know this must be very hard for him, and you both will be in my prayers. Does your husband have hospice care? I really do want to tell you that, at the time of his death, please be surrounded by family and friends. This isn't something that you want to face alone. Death isn't an easy thing to watch, I held my moms hand through most of it, and I saw things that will never leave my memory, things I wish that would leave my memory. Just be cautious with your son, if he is present during this time, I know he will want to be with his dad, but as I said, death isn't as easy as the movies make it out to be.

My thoughts and prayers are with all of you, I haope I have been helpful. If there's anything else you would like to know, just ask. I will help you to the best of my knowledge. God bless.

pwilliams8128 · Posted: Mon Nov 05, 2007 9:57 am Post subject: Re: my mom/my best friend

Hi Rachel,

I feel like I am losing it. Just last week, my mom was sitting up and talking, not eating much, but she tried. Friday she went from not eating at all, to sleeping all the time,she hasn't used the bathroom in three days, and now she doesn't open her eyes. I know that I have been trying to prepare myself for this, but this is the hardest thing. I find myself yelling at my kids and husband for laughing to loud or yelling while watching football, just doing the normal things that they usually do. I know that I am not the only one going through this, but sometimes I feel like it. Any advice you can give , I will appreciate. My sisters have been here once since I last wrote you.

Pat
_________________
Patricia Williams

LINDA GALE · Regular Joined: 11 Oct 2007 Posts: 13

Hello Rachel,
Thanks for your reply. This week has been the worst yet. I don't know if its the oxyplatin or the cancer. He has slept most of the week. His appetite has been nothing. His pain is getting alot worse. He is so constipated and we have tried everything. His hands and feet don't have a lot of feeling in them at times. Today is the first day he has been up at all. I can't bear to see him suffer this way. Hospice has visited with us but he won't let them come. He says he don't need them yet. He doesn't want any more treatments with the oxyplatin and xeloda. So I guess it's in the Lord's hands now. There is nothing else to try. My son Jonathan is afraid to be in the same room with him. He doesn't want to see him die. It breaks my heart for both of them. They have always been so close. Please keep us in your prayers and if anyone has any advice, please don't hesitate to let me know. It helps so much just to hear from other people who has faced or is facing this horrible monster. To everyone on the forum, my prayers are with you.

Love in Christ,

Linda Gale

rachel26 · Posted: Mon Nov 05, 2007 4:10 pm Post subject: Re: my mom/my best friend

Pat,

I am so sorry that you are facing this. I know exactly how you feel. I tried to prepare myself because I knew the worst was coming, but truthfully, you can prepare all your life and it's still going to hit you like a ton of bricks when it does happen. Losing your mother is really hard, it's the hardest thing I have faced so far. I also snapped at my husband over little things, stress takes over sometimes, I'm sure your family will understand.
I don't know if you feel this way, but I was scared to go to sleep, I was afraid that if I did, my mom would pass away while I was sleeping. The best advice I can give you is , have someone with you at all times, surround yourself with family, don't be alone!! It doesn't sound like your mom is doing well at all, Judging by my own experience with this, I'm afraid it won't be much longer. Cherish what time you have left, even though your mom isn't communicating with you, hold her hand, rub her face, just let her know that you're there and you won't leave.
Again, I am so sorry, I know the hurt you are feeling. I will keep you in my prayers.

Linda, I'm also sorry to hear your husband has gotten worse. It is the hardest thing in the world to watch a loved one suffer through this horrible disease. I'm so glad that you have the lord in your life, because, truthfully, he is the only one that has gotten me through this. Just keep praying. the Lord still has the power to heal, if he sees fit, if not, we just have to trust in his plan. Just as I told Pat, please keep loved ones close to you right now, don't try to go it alone.
I will keep praying for you and for everyone on this forum. God bless.

reenie · Posted: Tue Nov 06, 2007 11:11 pm Post subject: Re: my mom/my best friend

Hi Linda,
I wonder if JD would be amenable to Hospice if he knew how much help they would provide YOU- just a thought. One of my sisters is a Hospice nurse in Florida(Ironically a job she took just around when my husband was diagnosed) and she always says she wishes the clients would let them in sooner. They really are a wonderful resource. I just felt as if I could really focus on Sam once they were helping. Please don't misunderstand, there is still a lot to do but at least with hospice you are provided with every tool needed to make your loved one as comfortable as possible.
I think it is pretty common to see longer and longer periods of apnea toward the end. Knowing that may help Jonathan feel a little less afraid to be in with his dad now.
So very sorry to hear of another family going through this.
Peace, Reenie

LINDA GALE · Regular Joined: 11 Oct 2007 Posts: 13

Hi Reenie,

Strange I should get your email today. My husband decided last nite to let Hospice come in. They are coming over today to set him up. Thank you so much for your words of encouragement. He has also decided to stop the oxyplatin and Xeloda. The treatment was just too much for his already weak body. So it looks like we're about at the end of this road now. We're not giving up but we know it's just a matter of time now. Please continue to pray for us as we will all of you. I'll keep you informed.

Love in Christ,

Linda Gale

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