One patient with glioblastoma still alive nine years later
by stephanie68 on Mon Sep 10, 2007 12:00 AM
by Wilmabc on Tue Sep 11, 2007 12:00 AM
So sorry for what you are going thru.. Can the hospice agency send an aide to help you. I know I just went thru this with my husband. I could only receive 4 hours of help 5 days per week. I worked and had to wait almost everyday for the aide to show up. My sister, aunt and daughter were there for most of the day which was a big help. For the first month at home I had help during the day, but as soon as I got home I took over. They had him on Morphine 2x per day time release. If he needed a break thru medicine I was able to give him Oxicodiene but that really knocked him out, but did releive the pain. He was also on Neuroton for the pain in his upper legs. I had oxygen for him if he needed it. He was up mostly every night because of the pain. Between working and being up all night the Hospice Nurse took one look at me and advised for him to be admitted to a Hospice Facility. I only agreed if I could stay and did not return to work for almost 2 months. I did not care. There is a law to protect your job when you have a spouse, parent or child that is at their end of life. But the job thought I did not know this, its sad when people cannot understand what this means to a family. Going thru this is a terribly stressful time. Can you talk to your brothers and sisters and set up a plan so all can chip in and give you a break. Believe me it catches up to you, I did not comprehend what anyone would say. I just wanted to try to do it all myself. Even the Hospice aides would say to me let us help you but I insisted doing his care, sitting up watching him, etc. Try to see if you can get some kind of help. I know sometimes the Hospice nurses just come to check the vital signs, make sure they have enough meds, etc. but I would speak with the nurse and explain that you need help. Also try to speak with the social worker. Someone has to help you at this time.
I thought I would be able to keep him home until the end but they were able to adjust his pain medicine at the Hospice unit. He also was given a Fenetyol Patch to wear and it was changed every 3 days. When the time came that he was not able to swallow his received injections for the pain.
I feel terrible for you, you need a break. Try to stay strong, you are going thru a very stressful situation now. Call the hospice facility and speak with the social worker and tell her you need more help. Even if it is for a couple hours per day you can get a bit of a break.
Best of Luck
by VjeanH on Mon Sep 17, 2007 12:00 AM
Yes, I know exactly what you are going through. The only difference is that my husband is the one with lung cancer.
His cancer has spread quite rapidly. He just finished a round of radiation on his brain. I too am the only caregiver. We have three sons, but they work and it's difficult for them to help me. I stay on the job 24-7 just like you do, and often feel like crying. Going to mass helps me along with exercise. There is not much help in our community for cancer patients either. They just shut down the nurse's station so we have to drive into Miami; 80 miles each way everyday. I am exhausted. The American Cancer society sent a gentlemen to help with driving. He's not too alert, and my husband ended up in Fort Lauderdale when his treatment is in South Miami.
Hang in there. The Harvard Medical School informed us there are new drugs for lung cancer coming out next week. They will help our loved ones with a better quality of life. Bless You.
by ruthie56 on Fri Nov 09, 2007 12:00 AM
by champ on Tue Dec 25, 2007 12:00 AM
On 9/10/2007 stephanie-68 wrote:my mother is dying she has stage four lung cancer that has spread to her bones and in her lymph nodes i am her main care giver even though she has four other children and i had to take a leave of abesences from my job and move her into my home. First off i am so scared and i am so tired and i am very upset. my other brothers and sisters do not come over to the house to see my mother nor do they call to talk to her i do everything for her and i do mean everything with no help people are always talking about hospice being such a wonderful and helpful thing well hospice as done nothing except send a nurse to my home once a week for about ten minutes. I am very mad at god for giving my mother such a painful way to die we watched my cousin take his last breath due to lung cancer and he and an alful death my mother never smoked a day in her life and she would due a ten mile cancer walk every year and this is what she has to show for it being in pain twenty four hours a day everyday. i feel so all alone and do not no which way to turn. i am so very mad at my brothers and sisters that i could really go over there and kick all of their asses please i do not want to feel this way i need some encourgement
Pease know that I feel your pain, anger and all the rest of the emotions that you are and will feel. My wife of 49 years has been diagnosed with GBM Deadliest and most agressive brain tumor). It is very normal to ask WHY?. The simple answer is I have found is that it is out of your control and "Fair" has nothing to do with dying. If it were "fair "then young good people would not die. But they do. So much for the preaching. I am finding out that it is counter productive to the patient and you to spend valuable energy on those people who will not assist you, especially family members who, in the early stages, tell you that they will be there, and then when they are needed they have a thousand excuses as to why they can't be there. Take hope in the fact that you are doing your part the best that you can and let the rest wallow in their self indulgence. Things DO have a way of evening out.
God bless you and your Mother.
by stephanie68 on Tue Apr 01, 2008 12:00 AM
by champ on Tue Apr 01, 2008 12:00 AM
Dear Stephanie, Thank you for your thoughts and prayers for my wife. Kay passed away on March 2, 2008 after a five month battle with GBM. Her family (Three sons and me) were with her until the very end . It was a very sunny Sunday afternoon and she passed on peacfully looking out on the beach that she loved so much. I miss her more than I can say.
On 4/1/2008 stephanie-68 wrote:i am so sorry to hear about your wife you are in my pryers. my mother passed away 9/25/07 I am so glad that she is not in anymore pain cancer is a beast and i hate that any of us has to go through this. I hope that my mother did not pass from a broken heart because her children did not come and spend time with her. I know that hurt her more than the cancer did. please love and spend every minute that you can with your wife that is what she needs most.
by VjeanH on Tue Apr 01, 2008 12:00 AM
by faith1god on Fri Mar 12, 2010 01:13 AM
im realy sorry to here about your mom,just fond out today that my mom has lung cancer ,she just battled a hole year try to get rid of cancer tunmer she had on her head,she had 5 operations to get ride of this this ,come to find out it sprend in too her lungs and has a very poor chance of liveing now and i realy cant stand how ur other family would just give up on there only mother its so sad. well im here if u need to have someone to talk to and the lord is there to listen u just need to let him. good bye for now
by ra2010 on Sun Nov 21, 2010 07:02 PM
Out of desperation, I googled "My mother is dying of cancer" and your entry came up. What a shock to read almost my exact situation in your very first line. It was so painful to read what you wrote over 3 years ago. I too, am the main care giver for my mom and last night was the first time she told me that she could not take her blood pressure meds because she would not swallow the pills. Like everyone else who has replied to your blog over the years, it is so painful to watch some die, even worse when it is you own mother. My mom never smoked, and was just diagnosed in July with lung cancer and by the end of August, it was upgraded to stage four and spreading. Two weeks ago she had fluid removed from one lung and this week they found fluid in the other lung. It just breaks my heart to see her go through this. I feel so helpless because I don't know what to do to help. I am the crier in the family and of course I cried when I read your story. I am sorry for your loss and the loss of the others who are going through a similar situation. Peace be to all of you. It was a long and painful cry, but it was a relief to get some of it out. I try so hard not to cry around my mom, even though she knows I am her cry-baby. I am sorry that you lost your mother to lung cancer, but touched that you wrote about it. You don't know how many people your words have helped. I know they helped me and probably many more who weren't able to reply. Thank you and May God Bless you.
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