WHAT TO EXPECT AT THE END

lily321 · New User Joined: 23 Jul 2008 Posts: 6

I dont no what to expect at the end with terminal lung cancer.
Can anyone thats experienced it help me please.

sealnomore · Regular Joined: 13 Mar 2008 Posts: 12

It all really depends. I found in my dads case, that the end of life guidelines from hospice were really accurate. He followed the timeline almost to a tee.

I am sorry not to be of more help.
_________________
Debbie
http://cancerforums.net/viewtopic.php?p=31708

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1262

Lily,

It can go in many different ways. One of our great members, Vee Smith, posted this link not too long ago and it really covered a lot of the different signs and scenarios.

http://www.hospicepatients.org/hospic60.html

Here is another link: http://www.cancer.gov/cancertopics/pdq/supportivecare/lasthours/HealthProfessional/page3

Heart rates can go very high if it is having to work too hard. My husband was in and out of tachycardia and Atrial fibrillation for a few weeks before he passed. He was walking and taking stairs less than 24 hours before he passed. There is no rhyme or reason to what shape the end takes. I'm so sorry sweetie.

Another issue that is isn't spoken about is hemorrhaging and exsanguination from tumor encroachment into a major artery. This is RARE, RARE, RARE. My husband was at risk for this, because of tumor location, but it didn't happen. Typically the doctor will alert you to this possibility or you'll know because of tumor location. If you don't hear about it, don't worry about it. I'm not trying to frighten anyone, this is simply an FYI because I've known a handful that have lost a loved one this way.

This link touches on it a bit.
http://www.fraserhealth.ca/Services/HomeandCommunityCare/HospicePalliativeCare/Documents/10FHSymptomGuidelinesExsanguination.pdf

I do know it's an overwhelming experience that no caregiver is well equipped to handle. Don't feel bad about seeking outside help or calling an ambulance. The key is for them to feel comfortable. That and a lot of love is the best way.

(The first link is directed more at caregivers, while the second and third are more for medical professionals -- but by this point, we ALL have more knowledge than we ever cared to have about cancer.)

With a recent diagnosis for your Mom, I'm sure you have more time to make happy memories. Have hope.

Hugs,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

brainman · Posted: Mon Jul 28, 2008 6:46 pm Post subject: Re: WHAT TO EXPECT AT THE END

Lily, I just wanted to say how sorry I am that you even need to ask this question Sad

. I have been where you are with both of my parents and a child. It is an extremely difficult and painful place to be and my heart goes out to you.

PBJ has given you some awesome links that you will find most helpful. Is your mother in the care of a hospice? They are your best source of information since they can examine her.

You are in my heart-felt thoughts and prayers.
_________________
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/

hopeful · Regular Joined: 27 May 2008 Posts: 30

Hi Lily

I'm sorry that you are experiencing this. I certainly had the same question myself. The end differs for everyone, according to everything I have read on line through this site. However, Hospice was spot on with their assessment. They provided us with written materials, phone calls and visiting nurses who answered all of our questions. They really helped us cope with what was happening. I will never forget the hospice nurse who was present at the end. She was a godsend, an angel.

I'll be thinking about you and your mom.

koikkeril · Super Moderator Joined: 29 Jul 2007 Posts: 334

Lily
I am so sorry that you are going through all this...I hope the site PBJ has pulled up, helps you with all your answers. I am praying for you and your mum....God Bless, Koik
_________________
Husband diagnosed with stage 1V NSCLC Febuary 2007.....Lost his battle August 27th 2008 but lives on in my heart.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1262

Lily,

One other thing. There can also be ups and downs, as Koik is experiencing. The desire to live is so strong that it overcomes the impossible at times. There are so many bumps in the road with rallies following, that you never give up hope for another day of life.

I kept thinking that my husband always rallied. He didn't want help and I promised to not bring hospice into our home unless absolutely necessary. I probably could have used the info on the site that Vee Smith posted, but you kind of know in your heart when the end is imminent. If you're a 24/7 caregiver, you may see changes that aren't what your loved one experienced before. It can come fast and unexpectedly or be a lingering process.

I'm sorry and hold you and your Mom in my thoughts. She just may surprise you.

Hugs,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

Erica1980 · New User Joined: 14 Aug 2008 Posts: 2

My Mother in Law passed away of NSCLC on 3rd August 2008. She had been fighting since April 2007.

I am medically trained and I knew the clinical signs and symptoms of "the end" and she had them all. Let me tell you, it doesn't make it any less distressing having more knowledge about "the end".

My MIL had Lung cancer with mets to the brain. We weren't sure if the brain mets were affecting her at all, but she was saying some really funny stuff that didn't make sense. On Thursday she was admitted to emergency with acute SOB. She was transferred over to a hospice where she spent her final 3 days. On the Friday is was having alot of trouble breathing, and she was very distressed. She was constantly uncomfortable, and couldn't get comfortable to rest, because of her breathing. The nurses put her on a morphine pump and gave her oxygen. She finally found a position to sleep in, her head resting in her arms, slumped over a desk. It was a strange position and we thought she must be very uncomfortable.. but she slept most of Saturday in this position, waking up every now and then, looking around like she was disorientated and didn't know where she was. Her face was also very puffy.. due to the IV steroids they had given her. Her breathing was distressing for us to witness. A normal breath in, but a struggle to push the air back out.. every breath was like that.. The nurses assured us that she was comfortable and out of pain.
Over the saturday night, she deteriorated. 7am on Sunday morning, we got a phone call to come to the hospice as it looked as though she had only a few hours to live. When we walked into her room, she didn't look like who she was.. Her skin was a sickening greeny grey colour, she was in bed, but her head was slumped forward and she was drooling. She looked like she was a little old 90 year old woman. Her hands were blue, her breathing was shallow and slow. My husband kissed her on the forehead, started to weep and walked out of the room. I followed. At 10:30am she passed away. We were not in the room. It was our preference not to see her pass or to see her afterwards.

The pastor came to us saying that they were going to conduct a little memorial service by her bed side (she had passed at this stage). My husband declined to be a part of the service, and I supported his decision. However, his father wanted him to be with him and his brother. My husband did attend the memorial service, with his dead mother in the room. This was most distressing for both him and I. She looked dead... but not the peaceful kind of dead you see in movies. She was lying back, her mouth was open, and you could see her hands. Her skin was a horrible colour and it didn't look like the MIL I knew! My husband cried throughout the whole service. He was quite distressed by it. He said to me that he regrets seeing her after she passed, as this is his FINAL image of her.. and my final image also. I have been showing him photos of her when she was free of cancer to remind him of what she was like.. but we will always be stuck with this image... I didn't need to see her dead body to know that she was at peace and her suffering had ended but I knew that my father in law needed us there.

Anyway, sorry for the ramble. I am sorry to be so graphic.. but this was my experience watching someone with cancer pass..

My advice - feel OK with yourself if you don't stay at the end. Discuss it with the person who is dying BEFORE they start to deteriorate so that they know how you feel. You're the one that's going to have to live with this memory for the rest of your lives. Don't feel guilty if you cannot be there. My MIL didn't die alone... if you're the person that's there with them at the end, make sure they know the are not alone..

Death is a part of Life..

Best Wishes

LizNDale · Posted: Thu Aug 14, 2008 2:16 pm Post subject: Re: WHAT TO EXPECT AT THE END

Erica,

What a powerful post. It really gives me pause, I haven't thought yet about this aspect of it all. Imagining my mom like your MIL, I feel both ways: "no way, I couldn't witness that" and "Oh my gosh, my poor mom, I couldn't leave her"...

I am so sorry about your MIL, I hope you and your husband are doing well,

Liz
_________________
My Mother - Stage IV NSCLC - Adenocarcinoma
Mets to Adrenal Glands and Brain
Diagnosed Thursday June 12th 2008
Died Sunday September 7th 2008

Her Story:
http://cancerforums.net/about9639.html
Her Statement of Faith Memorial:
http://cancerforums.net/viewtopic.php?t=10528

bkerber1 · Posted: Thu Aug 14, 2008 5:38 pm Post subject: Re: WHAT TO EXPECT AT THE END

Erica, your post made me cry. I went through a similar situation with my mom in hospice. I however was with her at the end, and as you say, I replay that over and over in my head. It's been 2 years now and most times I think of her that is what I think about. Same for my dad, who died 5 days after her with the same thing. I was with him too. I wont go in to detail, but I see him over and over. I often wonder of the 5 of us kids , only 3 watched Dad die and I was alone with Mom, what do the other 2 remember. I really wished I hadnt been there, but Im so glad I was. The end was very different with both as was the process up to death.
Im so sorry for everyone's loss and pain.

zinger · Posted: Thu Aug 14, 2008 7:57 pm Post subject: Re: WHAT TO EXPECT AT THE END

Hi Everyone,

I've just read the posts in this thread and I've been sitting here for the last 15 minutes trying to compose myself. It's amazing to me how intertwined all of our stories become at one point or another and how, even as strangers, we have formed a common bond of compassion and understanding as we trudge along the cancer highway.

I lost my Mom on June 1st. Her hospitalization and diagnosis was very sudden and within a week she was gone. We hardly had time to digest everything that was happening. She had been in fairly good health up to that point and we never would have suspected that lung cancer would take her. We were never told what kind of lung cancer, they didn't even have time to do any tests.

Upon hearing that news my family went into overdrive. I have 3 brothers and 2 sisters and we all arrived in time to tell Mom the things we wanted to tell her and she told us the things we needed to hear. Mom knew her fate and she accepted it. She consoled us kids and told us not to cry.

We all knew she was ready to go, she had told us that she was ready many times over the 4 years that had passed since my Dad died (from lung cancer). He had been in poor health for about 7 years and she was his caregiver right to the end. Dad died alone in the hospital and the day he died a little piece of Mom went with him. They were married for 63 years and I have have great memories of Mom and Dad gliding across the dance floor to the sound of "The Tennessee Waltz" or some tune that Benny Goodman made famous. They were magical, like Fred and Ginger! After my Dad died Mom would listen to her music and dance around the living room with her eyes closed and her arms in the air as if my Dad were leading the way. She missed him so. She told us many times that she wanted to waltz again.

Mom had a great winter this past winter. She spent a few months with me in Florida, and a few months with my sister in Washington, and we both felt that Mom was doing better than she had since Dad died. She got home in mid-May and it was downhill from there. She was in the hospital for 10 days and upon hearing the horrible diagnosis we decided to take her home. Hospice was wonderful, they provided us with the meds she needed, the hospital bed, oxygen machine, and everything else, but most of all they were the calming force in a turbulent storm.

Mom was awake and alert the day we brought her home from the hospital and was excited to be there in her own house. Her pain had been minimal up to that point, but it was starting to get bad once we got her settled in bed. We started the morphine and she slept comfortably off and on all day waking occasionally to sip water or try and listen to our conversations. At one point she even cracked a joke and made us all laugh. During that night she slipped into a coma and we knew it was just a matter of time. My sisters and I were with her all the next day and into that night. She struggled for every breath and it was difficult to watch but we knew that the meds were keeping her comfortable. At one point in the early morning hours my sisters and I were sitting by the bedside and we joined hands as we touched our Mom, forming a never ending circle that's the love between a mother and daughter and sisters. That's a complex phenomenon that only we (as women) can understand. We told Mom that we loved her, we kissed her forehead and held her hand, and we told her to go, Dad was waiting and the waltz was starting...

My sisters and I were there at the end. Mom started to struggle a bit with the breathing. Each breath became labored and sounded gutteral and raspy. Then she became very calm and her breathing became very shallow, each breath more shallow than the one before. I sat at her bedside and held her hand, watching each breath until there were no more and Mom was free. My sisters and I each experienced something different in that room that night and for each of us it was a bittersweet encounter, but the love we felt for our Mom, for each other, and for our family as a whole, is something that will live in our hearts forever. Mom is at peace, and we are good with that. She raised us well and we have faith that she is in a better place.

4:35am That's the time imprinted in my brain. I have awakened every night since Mom died and have watched the clock roll past 4:35am. The scenario plays over and over in my brain like a video tape that I can't turn off and can never rewind. I know that Mom wouldn't want her kids to be troubled so I have to remind myself daily that she is happily waltzing around the clouds with my Dad. That makes me smile. I had a wonderful Mom and Dad!

My prayer for all of you is that you can find some element of comfort and solace in the heartache and turmoil that comes along with these horrid cancers we all have written about on this forum. Whether it be sharing a quiet time after hearing a diagnosis, or holding a hand and stroking a forehead when the end is looming, there is beauty and love that knows no bounds. Reach for it, it'll be there and will bring you peace in your darkest hour.

Wherever you are in this terrible journey, you are all in my prayers!

I love you, MOM!

Cathy
_________________
Dad ~ lung cancer diagnosed Dec 18, 2003, passed Mar 3, 2004.
Mom ~ lung cancer diagnosed May 27, 2008, passed June 1, 2008
They're waltzing once again...

bkerber1 · Posted: Fri Aug 15, 2008 12:14 am Post subject: Re: WHAT TO EXPECT AT THE END

Cathy, Im so sorry for your loss. I hate to say it, but Im glad in a way that my parents went so close together. Reading your story makes me grateful that my mom or dad did not have to go through the loneliness of the loss, they went together. I remember my dad telling us when he was in the hospital the last time a few days after Mom had died that he had a dream that she was pushing his hospital bed around the halls. I guess that she was waiting on him. I wish you peace. I dont know when this gets any easier, but Im hoping it will....the one thing that has happened is that my brothers and my sister and I are much closer and vow to do things together as often as possible. We started last year renting a cabin in north Ga. and we all took vacation together with our families. We went again this year and it was just wonderful. Mom and Dad would be so delighted!
_________________
Dad diagnosed NSCLC adenocarcinoma 1/06 passed 5/6/06
Mom diagnosed large cell anaplastic lung cancer 3/06
passed 5/1/06

zinger · Posted: Sun Aug 17, 2008 11:29 am Post subject: Re: WHAT TO EXPECT AT THE END

Dear Bkerber,

Thanks for your kind words, I wish you peace as well. I can't imagine losing both my parents so close together. I'm so sorry...

It brought a smile to my face when I read about your Mom pushing your Dad's hospital bed down the halls. Even death can't eclipse the love and devotion between two people who have spent a lifetime together. When my Mom would dance around the living room I could ALMOST see my Dad in her arms... but she KNEW he was there. I completely understand when you say that you're grateful that your Mom and Dad went together. Even in my grief I am happy that my folks are together again. The lonliness my Mom felt was crippling at times.

How wonderful that your family has begun a tradition of vacationing together. If everyone's schedules cooperate, my family will be doing the same thing this winter. Hopefully it will be the beginning of our own family tradition.

Sending prayers to you and yours,

Cathy
_________________
Dad ~ lung cancer diagnosed Dec 18, 2003, passed Mar 3, 2004.
Mom ~ lung cancer diagnosed May 27, 2008, passed June 1, 2008
They're waltzing once again...

koikkeril · Super Moderator Joined: 29 Jul 2007 Posts: 334

Hi
I am not there yet, so I cant say from experience but there is some powerful stories on here and giving me some insight what to expect.

I know everyone is different and has a different illness so the stages can be moved around..

I hope this helps you Lily because you are a new user and you must be so heartbroken to have all this dropped on your lap so quickly...

I want you to know, I think of you often and hope soon you are able to let us know how you and your mum is doing.

God Bless, Koik
_________________
Husband diagnosed with stage 1V NSCLC Febuary 2007.....Lost his battle August 27th 2008 but lives on in my heart.

zinger · Posted: Thu Aug 21, 2008 3:12 pm Post subject: Re: WHAT TO EXPECT AT THE END

Hi Lily,

I was just wondering how you're doing. Please give us an update when you're ready. Sending good thoughts your way.

Cathy
_________________
Dad ~ lung cancer diagnosed Dec 18, 2003, passed Mar 3, 2004.
Mom ~ lung cancer diagnosed May 27, 2008, passed June 1, 2008
They're waltzing once again...

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