Hi, everyone. About five weeks ago, the doctor gave my mom 6-8 weeks to live, and this week, she started at home hospice care. Prior to Sunday, she was able to walk pretty good, ate fairly regularly, and was perfectly coherent. She started taking morphine and methadone that day. The next day, and ever since, she's been completely out of it. She has barely ate, or drank, and can barely talk. Can't walk, much less stand up, without a lot of help. And today, the nurse came to see her, and left a pamphlet about the dying process and what to expect. (I wasn't there at the time, so was unable to ask questions.)
I am CONFUSED. These medications are not helping her. Whenever she does talk, it is to complain of pain. These medications are only taking away her ability to function. It's like they're intended to speed up the dying process by keeping her from eating and drinking, and "helping" her organs shut down, or whatever.
For the record, I'm 23, still live at home, and my mom's been sick for over a year now. I am angry and confused and SCARED, and feel completely helpless. She's had a few chemo sessions this last month, and is supposed to see her oncologist again in a few weeks. She actually seemed okay before they started doping her up. This whole situation just feels incredibly wrong to me.
My mother was diagnosed with StageIV Lung Cancer in 9/06, she had no symptoms of Lung Cancer Except three years ago her primary doctor who is a pulmonologist said she had asthma and put her on asthma meds. My mother always came to my house and helped me with my children. She left my house on a Friday night and the next day woke up with dizzy spells and double vision. My father brought her to the ER. They did a chest xray and said there was nothing wrong with her chest. They did a brain MRI and found many tumors in her brain. They kept saying they didn't know where it was coming from. They were really worried about her brain so they started radiation right away to the brain. After the 15 treatmnets they said everything was clear. They did a cat scan of her chest and that is where they found a tiny lesion on her lung and lymph node, but they weren't too concerned because she really didn't have any difficulty breathing. They then started 6 months of chemo to her lung and after that was done they did another scan and they said everything was clear. Well not even being off the chemo for one week, she started having severe pain in her jaw and it was very swollen, they kept teeling her that it was just inflammation and they gave her antibiotics, but it wasn't going away. She had a severe stroke in May 2007 and while she was in the hospital they had an oal surgeon look at her jaw and he didn't like the looks of it. She then went to him after she got out of the hospital and he found a massive tumor there and the only treatment was radiation for the pain. Then they did another pet scan and it showed that the cancer was in her L2 and L3 and it was back in her chest again at that time she could only have radiation to her hip for the pain. The radiation really didn't help her. She started going down hill everyday. Her oncologist told my sister one day that she was stable and then 2 days later he told my father that she was luck if she had 2 weeks left. We noticed after the stroke, she started not wanting to eat or drink anything, she started losing weight, she was hallucinating alot. One day she was really bad so we brought her to the ER. My family thought she was just dehydrated well it turned out to be that her body was shutting down and we did not know it. They told us in the hospital that she had a urinary tract infection and that was not the case. Her kidneys were failing and then everything starting shutting down. She was in so much pain in her jaw and in her back. They started giving her morphine, but it wasn't really helping. When she was brought to a differnt hospital, where they just deal with cancer patients, that is where they were giving her mrphine everytime she was in pain. It was so horrible. Her last 3 months she was suffering so bad. She passed away on 7/28/2007. I held her hand for 3 hours that day and the minute I stepped out to go to the bathroom she passed. I couldn't believe what I was seeing. Her last 2 weeks was really bad she tried to talk to us and open her eyes, and she couldn't. I am so lost without her. She was my best friend and I miss her so much. I still can't believe that she is gone. I think that I am still in shock. Two months prior to her getting diagnosed she had a physical and her docto said she was very healthy. She was 70 years old. She did smoke, but she had quit 10 yrs. before that. Thanks for listening to me. I hope this made sense to you.
I am not a trained medical person by any means.....but I think what you are sharing and feeling can be very common with someone on hospice...and in my work...i have had the pleasure of working with hospice...and they helped my mom and dad both in their final days..morhine is used to help people be more comfortable...and i am sure it does not control all pain...but i can't imagine what someone would be feeling without it...the medications you are talking about...in my own personal experience...are used really towards the end...they can slow down breathing in an already compromised body...so I do personally feel that it may hasten passing...it probably could...but I feel only by hours or days...not weeks or months...and I would rather have my loved one as comfortable as they could in their remaining days...than do have them with me a few more hours and days being physically miserable and in pain...the medications didn't cause my parents death...it was the cancer...I know that...Hospice should be available 24/7...so if you have any concerns about the medications....call them...that is what they are there for..my thoughts and prayers are with you an your loved one...I know personally how very hard this journey is for all...take care...c
Thank you for your replies. I'm sorry for what you have both endured.
I just feel so helpless. Despite how medicated she is, she is still in pain. And she is so disoriented...doesn't know where she is, or who I am, or who ANY of us are. It's just so scary.
my heart goes out to you. My mom has been in hospice care for three weeks now due to small cell lung cancer. We thought she was going to go two and a half weeks ago, mostly because of things like you have been saying; confusion, weakness, lack of eating. But she rebounded for almost two weeks of fairly good days.
talk to the hospice people. they WILL help. sometimes it takes a few days to get the meds straight. Mom was on haladol and morphine (5:20) for the first few days, then we moved her to pheobobarbatol and 1:20 morphine. I might have the ratios wrong, but basically we went from a weaker morphine to a stronger morphine. That and the phebobarb seems to have helped my mom have some good days. she's been for the most part coherant and seems to not have difficulty breathing that she had before.
then again the disease is effecting your moms body. sometimes the decline can happen in hours. lack of oxygen to the brain can cause the confusion as the body is concerned about the core organs, and the brain is expendable to an extent.
Good luck and prayers. Again, talk to the hospice people and tell them your concerns and that your mother is still in pain. They will do what they can to keep her comfortable.
Thank you for replying, Kiasmama. My mom also has SCLC...sounds like we're in a similar "boat." Her pain seems to be under control now. The nurses don't think she has much time left. Maybe a week. But once again, no one ever knows for sure.
There are other drugs available that deal with the pain. Ultram may be one or lyrica. Consult with a pain specialist
[QUOTE=sarahsnow;3558429]Thank you for replying, Kiasmama. My mom also has SCLC...sounds like we're in a similar "boat." Her pain seems to be under control now. The nurses don't think she has much time left. Maybe a week. But once again, no one ever knows for sure.[/QUOTE]
you are right...no one ever knows for sure. Twice I was told my mom had probably only hours and she rallied and came back for a few great days! In fact, yesterday she went for a car ride!!
My mom is going thru a phase now where she thinks we are giving her the medicine to keep her sick. She was refusing to take it, but the nurse finally got her to take it.
It's going to be an interesting process and you'll be going thru a lot of different emotions. From great highs to great lows. I guess it's just part of the deal. Just remember hospice has social workers available and offer a ton of services. USE them.
Talk to the hospice nurse first about your concerns regarding your mom's meds. If you're not happy with the answer you get, talk to the director or the prescribing doctor.....somewhere along the line someone will listen and give you a straight answer.
Kiasmama is correct about the brain / lack of oxygen. The part of the brain that controls our consciousness will start to break down; confusion, fatigue, and eventually unconsciousness results.
So talk to your mom......and I mean really talk. Spend as much time with her as you can no matter what.....blow off work if you have to but spend the time. This is the one time in your life when it really is a life and death issue. Clear up any issues you have between you, tell her all the things you may have been afraid to in the past. You have an opportunity to say goodbye and be with your mom when she needs you the most. You will be glad you were there for her.
I have also questioned this.
My dad is on a very low dose of morphine as needed.
5 mg every 8 hours.
Morphine does slow breathing down,and when given in large doses or constantly-will stop breathing completely.
When my cousin was dying of cirrhosis of the liver in 2005he was in so much pain.
They started a morphine drip so that he could go in peace.
I remember getting off the elevator on the 7th floor of the hospital and hearing someone cry out in such pain "God help me!"-and sadly it was him.
Once they started the morphine,he drifted off and was at peace.
So I guess it's the dosage that matters.
I'm so very sorry to hear what you're going through *big hugs*
This moment in yours and your moms life are frightening but can become some of the closest moments you share together.
I lost my Dad to Small Cell last year and he was in hospice care at the end for a month or so. They had him on morphine and methadone. He hated it, and eventually would argue with me that the drugs were hurting him more then his disease. Hospice is a great help and don't be afraid to talk to them (anytime, even 2am!)...they re-adjusted my Dad's medicines and he seemed to be feeling more comfortable and at ease.
Everyone is right about lack of oxygen to the brain..it does help contribute to confusion, etc. What helped me the most was any of the information that the nurses would give me - especially the book they gave me on what to expect. It helped me to prepare for each stage and come up with a game plan on how to keep my Dad comfy.
It's a scary situation you're in...but being with your mom at this time is the best gift you can ever give her. Death is a natural progression of our life, and although it hurts horribly to loose someone you love, it is something we all must deal with or experience on our own.
By you being there with your mom and letting her know that you're with her during this journey will make her transition a much less frightening experience. Take these moments you have, share them with your mom, remember the good and bad times, let her know you forgive her for any issues you may have, and above all...which is the hardest thing...let her know it's okay to move on. Some people never have these last moments to share with their loved ones before they pass on, and I feel fortunate enough to have been with my Dad during this time. I only hope I have this opportunity when it's my time to leave....
If you need anyone to talk...please let me know...
Take care and stay strong~
I have to agree with Jeanie-both my parents died of sclc-Dad about 20 years ago-Mom 2 years ago this month.
We started giving Mom morphin(liquid form) when she was becoming 'antsy'...we talked with her - told her it was ok - and I'm a big believer that until someone is ready to let go that they will die.
All of her children/grandkids came to see her-she hung on until her grandson who was in the service got home to see her-within 15 minutes she passed away. I don't know if this helps any.
Hi, you make a lot of sense, I went thru the same thing in 1997 with my Mom, it was hard to watch her fade away. No one knows until they go thru something like this how hard it can be on a person. My Mom started with Lung cancer, had two operations to remove it over two years, then finally it went to her brain in the 5th year and that was the hard part...I was thankfull she never didn't recognize us, she always knew us by name until the end, thankfully...I'll never forget her, she meant the world to me. One good thing is that I had a few good years with her and made good use of it. God Bless anyone that has to go thru this.