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Mom started hospice at home last week-refused feeding tube

Heeran's picture
Heeran
Posts: 173
Joined: Aug 2011

We received results of a cat scan a week 1/2 ago and it showed that tumor at surgical site got bigger and has spread to kidney and liver.  Oncologyst wanted to switch to a different chemo drug and get a G-tube immediately but mom refused the G-tube.  She was adament that no more doctors will poke, prod, slice, or put her to sleep.  She had 5 dilitations and then a stent put in and had all sorts of trouble afterwards.  Oncologyst and I begged her for an hour and then me the entire weekend and she wouldn't change her mind.  I was heartbroken so we started hospice at home.

 

It's horrible to watch the person most dearest to me die in slow agony.  Just last week she was able to drink and eat watermelon and porrige and a week later, the tumor closed everything up and she goes into massive coughing fits and throws up bubbles & saliva.  Sometimes she can't breath while throwing up.  She has horrible side effects from the meds that are supposed to keep her "comfortable".  What a joke.  She's miserable.  I have the night-time shift so I watch her all night and most of it she's coughing or gagging.  I keep wanting to wake up from this nightmare wondering why we didn't try this or try that or why the doctor didn't take a scan a week or two earlier and switch chemo drugs right away so that she wouldnt need the G-tube yet.  

 

I feel so desperate and grieving as I'm about to lose the most important person in my life.  I've never watched someone die before so I don't know how much scarier this is going to get.  I pray every night that she dies peasefully in her sleep but then my whole family has to watch her coughing, throwing up, massive mucous coming out, and the hospice team/oncologyst are telling me this is the norm of EC during hospice.

For those of you who have gone through hospice as a caretaker, can you please share your stories so I know what will happen in the next few weeks?  Doctor gave my mom 1 month to live since she is not getting nutition and 1 week has already gone by.  I'm still giving her daily fluids and I don't know what to do.  I don't know how to be an advocate at this point.  I'm scared I'm going to keep making mistakes and making her last few weeks more miserable.

 

Heeran

wakeling
Posts: 1
Joined: Aug 2013

The situation with my father was different in many ways from your mother's however I just wanted to assure you that it sounds like you are doing everything that you can. Respecting her decision will de difficult but the only thing you can do is be there for her and try and make her as comfortable and happy as you can. Just be you that is the best gift and comfort you can give.

Experiencing the death of a loved one is a very individualistic experience. I was there when my father died and I would not have had it any other way. I knew he was ready to pass and so did he. It's difficult but it's not as though they ever truly leave you. 

 

Wishing you and your family only the best,

 

~Wakeling

Ladylacy
Posts: 482
Joined: Apr 2012

I am so sorry to hear about your mother.  Please remember this is her decision and hers alone as hard as that is for you and your family.  My aunt fought EC for 3 1/2 years.  Radiation, chemo, surgery and then more radiation and more and more chemo until she said enough is enough.  She did have a feeding tube that was inserted directly into her intestines but she used to say it cause more problems than it was worth.  She went into a coma at the end and passed peacefully according to her family.

Now my husband has been fighting cancer for 3 years, first laryngeal, chemo, radiation and surgery.  Then in April 2012 we found out that he had a second primary at the cervical of his esophagus.  Surgery was ruled out for several reasons.  He underwent more chemo and radiation and was NED for about 4 months.  In February we found out that the cancer had reoccurred and was a much larger tumor and had also spread to his right lung.  Only thing offered was strong chemo, but he declined further treatment.  While I and our sons don't agree with him, it is his choice and he is very capable of making that choice.  Chemo would have possibly hastened his death.  To date he is doing okay.  He is able to do what he wants when he wants, energy level very low, pain level is controlled with medication (at least that is what he tells me).  He does have a PEG tube since he is unable to swallow foods.  Says when he tries feels like something is stuck in his esophagus.  The doctors didn't tell us how much time he has left because they stated they didn't know.

Enjoy the time you have left with your mother.  Don't push her regarding more treatments.  In-home hospice can only give so much pain medication and when they aren't able to control her pain, they will talk about putting her into a hospice facility.  That is what we were told and when we had hospice for my mother, we were told the same thing, but thankfully she went into a coma for the last few days of her life and she died in my home with family around her.  My mother was not able to take anything during the last week and half of her life and she had refused a feeding tube and any type of fluids.  She did not put out any urine during the last week of her life.  The hospice nurse was here checking on her the night she passed.  We were sitting out in the family room when our son called us back.  She passed then and the hospice nurse told us that when she heard us talking and laughing, she knew we would be okay and she let go.  Her last two days, her breathing was very irregular and slow.

Wishing you peace and comfort -- Sharon

paul61's picture
paul61
Posts: 1111
Joined: Apr 2010

Heeran.

I am so very sorry to hear of your Mom's difficulties. I wish I could offer some suggestions on how to her more comfortable. I just wanted you to know that you are both in my prayers for peace and  comfort.

Paul Adams
Grand Blanc, Michigan
DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009
Cisplatin, Epirubicin, 5 FU - Three Year Survivor

 

Heeran's picture
Heeran
Posts: 173
Joined: Aug 2011

Thank you for your thoughts, prayers, and your own stories.  I'm a private person and have not really talked about the last two years of my mom's fights with other people.  Just a couple close friends and husband so it helps to come on this forum.  It is difficult seeing my mom so fatigued and fighting the constant secretions and the bad side effects of the drugs, but there's no where I'd rather be.  My heart feels heavy, I have insomnia all of the sudden, and I really scared.  But I don't know what else to do.  No matter what i'm going through, I know my mom is going through 100x the torture.  I don't understand the rhyme or reason in this world sometimes.  I'm assuming there's murderer's and rapists who get to live a long and healthy life who "get away with their crimes" and then there are wonderful people like my mom and others on this board who are short-changed.  We don't have a religion, but I would like to believe my mom's spirit will go to a wonderful place when the time comes.  That's the only thing that is giving me remote peace.  Thank you for sharing and listening.

ebawa
Posts: 39
Joined: May 2012

Hello Heeran,

I am so sorry to hear about your mother's current condition.

I pray that God will comfort both you and your mom during this difficult time.

Alan

callerid
Posts: 99
Joined: Dec 2012

I am sorry to hear about your mother. It is difficult to watch someone you care so deeply for to suffer.  Ask your doctor if medications that reduce secretions would be of any help. I know they use them with saliva...not sure about mucous. If your mom is able, ask her what she wants. 

Random Element
Posts: 1
Joined: Sep 2013

I am sorry about your mom. I am at this time enduring a similar situation. My dad suffers from dementia and has not been eating enough to substain his health. Odd part is I am hearing about more treatment options from nurses and friends who work in carehomes than I have from any of the doctors I have taken him to. It's their strong opinion my dad's body is shutting down and they don't want to interfere with the natural process by inserting a feeding tube. My dad's home care nurse has told me he has a strong heartbeat, strong lungs and normal kidney function. She said these facts alone is proof my dad's body is not shutting down yet. He just has difficulty swallowing because of his illness. This Friday I have to make my case to my dad's primary care doctor that I believe my dad is a candidate for a G tube.

 I urge you great caution when dealing with hospice. Their motto is no accute intervention. They pump their victims fulll of morphine to reduce the pain for something as simple as a UTI that could easily be treated with antibiotics. My dad suffered a mild heart attack before I finally kicked hospice off from his case. Hopice nurses will console you with kind, caring, understanding words to make you believe that letting the one you love pass is the right thing to do. They are trained to do this. I have a friend who let them persuade her to let her grandfather pass. She followed their instructions and have regretted it ever since. I don't know the full story with your mom so I can't tell you what to do. I can tell you what not to do though. Don't let hospices nurses make critical decisions for you. If your goal is to let your mom pass quickly and painlessly, a steady dose of morphine will get the job done. If she can still consume liquids, Ensure high proteins drinks might help prolong her life a short time without suffering starvation. Rite Aid has high protein ensure shakes with 25 grams of protein per shakes. I have been substaining my dad on these shakes for a couple of months now while trying to convince doctors he needs a G tube.

Good luck with the difficult decisions ahead and trust your instincts.

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

I don't know if you remember me or not, Heeran.  I was a caregiver to my lovely husband, Nick from diagnosis May 19, 2011 until he lost the EC battle on June 19, 2012.  We were posting around much the same time.

There is no right or wrong when a loved one is dying.  They need to be comfortable, kept as pain free as possible, and feel the family & friend love.  Nick's last days at home were challenging for him.  He was in more pain than he would admit to and so very uncomfortable sitting, lying or standing.  He would take pain meds, but would lose control of his bodily functions and he hated that.  When he went for his final radiation treatment - the EC had become brain mets - on June 18th, 2012, he collapsed at the hospital.  His oncologist admitted him and then called me to say that Nick would not be leaving the hospital again.  I sat by his bedside all night long, holding his hand and telling him how much I loved him, what he meant to me and our children, and how much I would miss him but that it was okay for him to go.

I hope your mom is comfortable and that YOU are at peace knowing you have been a SPECTACULAR caregiver to your mom!  I'm so proud of the job you have done for her and I'm certain that she is as well.  You have been devoted to her.  She has been blessed to have you.

Love & hugs, Heeran.  Your story has touched me through the years.

 

Terry V

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