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last days

bugs_mommy
Posts: 24
Joined: Dec 2012

i have another issue about my husband with gmb stage iv, i have read in books how cancer patient r in their last weeks/days but i would like to know how it is from a person perspective, just need to know what to expect, if anyone has seen please can u let me know so i am not surprised when it happenes and i will be prepared..well i guess i will never be prepared just a little more ready..

-janelle

jalu
Posts: 58
Joined: Jan 2013

Hey lady, I know what you mean.  I want to know what is ahead.  Having faced the REALITY that I am losing someone I so love, I need to know what is ahead.  What suffering will be involved? 

My Mother has brain tumors that are growing/multiplying and I asked my oncologist what kind of death will it be?  What will happen?  My doctor stated of course that it all depends on how and where the tumors grow and develop, BUT in general, with any brain cancer -- she will suffer a "neurologic death". He says: "Problems will start when the tumors grow and press on the vital parts of the brain. When the problem grows, she may slip into confusion or coma depending on the area of brain involved. She might have recurrent seizures. Speech or movements may be affected. It all depends on the part of brain involved."

Your Hospice will be with you every step of the way.  I am counting on that for my Mother.  They WILL step in to MINIMIZE suffering.  You (and I) have to be strong and face what is ahead.  For your husband -- for my mother -- we have to be strong!

And it hurts!

 

bugs_mommy
Posts: 24
Joined: Dec 2012

thank u i have been trying to stay so strong but i dont know if i can witness my husband dying. its going to be hard but if i know what to expect then it should be a litle easier.

bugs_mommy
Posts: 24
Joined: Dec 2012

i dont know if anyone has been reading my sotry or not but my husband gave me a scare, he was falling asleep while eating supper on january 15 2013, and after supper he fell asleep but didnt wake up and would not respond to anything not even pinching his fingers or toes, or rubbing his chest, so nurse and on call doctor said calling family would be a good idea to let them know, so my inlaws drove in, and o did all our friends and his cousins, finnaly by 3 am he started slowly opening his eyes and then it took a day for him to respond again but only with nodding his head yes and shaking it no.

doctor said it could have been more bleeding in his brain that caused that but they cant tell.

so anyways we got transfered to a different hospital, something closer to home that way i can still go home at night to my girls, and we r still waiting for a bed at the local hospice for my husband, closest place we can get him to home, because his wishes were to pass at home but we cannot do that we need too much help with him so the hospice is the nest best thing .

thanx for reading my stuff i need to get this out one way or another :)

jalu
Posts: 58
Joined: Jan 2013

...hearing your story and you are sounding strong for your husband (and your children).  Keep me posted -- when it is time, we will have my Mother in hospice (I understand in a matter of "months"), so I'm not far behind you.  I appreciate your sharing -- your feelings -- and knowing the painful reality of what is ahead for my Mother.  THANK YOU.  Plain and simple -- she is dying of brain cancer metastasized from a spot in the lung.  Targeted radiation killed the initial spots they saw, but the latest MRI shows new tumors growing.  Doctors can only offer whole brain radiation treatments (WBRT) which are not a cure -- which cause horrible side effects -- and I just cannot put my Mother through that.  She will die with WBRT and she will die without WBRT.

I do hope your husband is comfortable and not suffering.  Hospice will certainly make that so.  I have a lot of faith in hospice and know that I am thinking of you and your family.  I'm lurking in the posts everyday -- looking for that miracle cure for brain cancer.  Take care and I'll keep you posted on my Mother as well.

P.S.  My post was:  DOES WBRT WORK?  IS IT WORTH IT WHEN IT IS NOT A CURE? 

 

 

nikist100
Posts: 3
Joined: Mar 2013

Hi, Bugs.  :)  I too, am in a similar situation.  My husband was diagnosed with stage 4 Glioblastoma in June.  Every day, I get the exciting task of waiting and watching to see what other skills have declined that day.  I'm not trying to be depressing, but I'm in the medical field too.  I'm a speech pathologist, so I usually work with patients that have TBIs and have to relearn their skills.  Exciting...  But not when it's your husband.  So far, he's doing well, but I know it's just a matter of time, realistically.  I do have to say that I did talk to my doctor about getting on some anti-depressants b/c watching your soul mate die a little bit everyday is a little tough to handle.  It's been almost a year, and he's doing well, by the way.  I asked my husband's doctor, and knowing from my own (be it limited) experience that he will most likely go quickly from a seizure.  He is, and will, experience more loss of skills, but his death, I was reassured, will most likely be very quick.  I know this appears to be a somewhat depressing post to outsiders, but I think the quicker and less painful way anyone can go, the better.  This is a tough road for anyone, but God has given us this experience for a reason....no matter if we know/agree with the reason or not.  I like to look at it that my husband's work on Earth is almost done-he was such an exceptional person that he doesn't need to be here anymore.  He gets to return to the Heavens and look down and make sure I'm taken care of.  Lots of love and prayers, Bugs.  Stay strong.

mighty6
Posts: 47
Joined: Sep 2011

Janelle,

I was hoping for a better results than this. So sorry that your husband's bleeding affects him so much. Nobody knows what is next.

But please keep writing, hopefully, venting out here on this board helps you in anyway. You are not alone. 

 

-- Jane

bugs_mommy
Posts: 24
Joined: Dec 2012

my husband is now moved to the hospice care, for the last week he hasnt been talking much, once in a while he will nod yes or no but just stares at u most the time, food and drinks dont go down so easy him. my tep daughter has brought in a monkey with arms and legs that velcro and h loves it, to me its the he is becoming a child again, jus the way he plays with things..anyone else have this happen?

jcwinnie's picture
jcwinnie
Posts: 9
Joined: Dec 2012

I have been acting more childish (quirkier) with my spouse (principal caregiver) and I appreciate how you husband is dealing with the last days. Thanks for sharing the humanity of it.

(Dx with GBM Stage IV on 5 Nov 2011)

Raani01
Posts: 68
Joined: Mar 2011

Dear, it is been 6 months since my husband died from brain tumor. The loneliness without him Is making me kind of non- funtional.my kids are 16,18,and 25 years old so they don't demand any of my time (which is a good thing because I can relax and do nothing , but bad thing because it leaves me with a feeling that no one needs me!). There is a lot of things I could keep writing. I  haven't post much after my husband's passing even though I wanted to , I couldn’t make myself up to doing it. I was heartbroken reading many who were with me in my journey lost their loved ones in the last 6 months on this forum. But I couldn’t not  help myself not writing to you  as I feel like you are following me. My husband was much older than your husband (he was 52), and I thought I have carefully made all my decisions and I have done everything right while he was sick. I had all the support from my kids and family. Still, now I second guess and regret that I haven't done everything. I feel like I was in somewhat denial state or that I was desperately hoping that he would be with me little more time and my grief  made me little blind from the reality. I somewhat resent that the people who were emotionally stable and knew what was ahead didn't make me understand (say point blankly out of love) he wouldn't be with me in 2013 and encourage me to do more stuff with him. Please know that I am not complaining and I know and very grateful for every support ,what I am trying to say is that even when my husband was bedridden and not talking, I had the comfort that he was still with me. I never knew that not seeing him ,and touching him would be this hard.

Why I am telling this to you now as you are going through the most difficult time of your life with 2 little kids and doing everything in your power?! Only reason is that I just want to remind you that , you should take personal responsibility and find time and ways  to do the things that you can carry on as memories. My husband was just like yours, doing ok after surgery and got a bleed and lost cognitiveness. He answered all our questions with one word and eat well until 2 days before (I thank God for that mercy). He came on hospice on April 2,2012 and passed on July 18th 2012. Doctors gave 2 weeks and he was with us almost 4 months. Since you sounded like emotionally stable and asking to share other’s experience, i am sharing my 2cents. I don't know your financial situation. but, if you can take time off from work, it is a good idea to take him home on hospice and make memories with your girls; pictures, sleeping by his side ( i pulled our master bed close to his hospital bed and slept holding him!). Once my husband was bed ridden, it was not too much work for me. Especially, hospice help was available. Even though I was fortunate to take time off from work and spent time with him for the last  4 months of his life, I now regret why I didn’t take time off  the last whole year. My husband didn't le t me take time off because he wanted me to work to make sure we had good insurance for his future treatments and the bleed came from nowhere and he is gone!Sometimes I felt like I did everything putting his interest first and forgot about me competely(that is the right way as we all know in our situations!).However , sometimes I feel like I forgot to do things that I wanted to do and keep as memories. All the good intentional people; family and kids, will move on with life and we will feel like we are left alone with our pain (simple reality!). One thing I remember was that everyone advised things that would make my life easier in the most difficult time. So,you are left with the responsibility to figure out what would make you at peace today and in the future.

 Please know that I am confident that you are doing the right things and the best thing in your own unique situation. My only intention is to help you remind you that now you might think you don’t want to see your husband in suffering ( I prayed God to take him home the day before !).But, you will even miss this sad time of seeing your husband sick. I am  at work now and I just miss the anticipation of seeing him at home in the evening.So keep listening to your own heart more , when it is hard to find time to listen.

With prayers and love

Raani

 

jalu
Posts: 58
Joined: Jan 2013

...And you are not alone.  There are so many of us, having to watch our loved ones fade away.  For all of us who will have to face the "hospice" experience in our last days, has your experience been positive?  Are they keeping your husband comfortable with minimal suffering?

You are so strong girl -- and right now I realize you have put your needs last -- your husband's and children's needs come first and they are all so fortunate to have you.  But I know inside you are suffering and I am so very sorry.  Don't forget -- you are not alone.  Little consolation, but so many of us suffer with you.

Again, you are in my prayers don't forget...you are not alone...there are so many of us out here. 

jalu
Posts: 58
Joined: Jan 2013

...And you are not alone.  There are so many of us, having to watch our loved ones fade away.  For all of us who will have to face the "hospice" experience in our last days, has your experience been positive?  Are they keeping your husband comfortable with minimal suffering?

You are so strong girl -- and right now I realize you have put your needs last -- your husband's and children's needs come first and they are all so fortunate to have you.  But I know inside you are suffering and I am so very sorry.  Don't forget -- you are not alone.  Little consolation, but so many of us suffer with you.

Again, you are in my prayers don't forget...you are not alone...there are so many of us out here. 

GeraldYolo
Posts: 2
Joined: Jan 2013

I feel what your going through with your husband, I'm on stage 4 (oligodenglioma) , have been medicataed like crazy Temodar (140 mg) for about 13 weeks, then had a break for about a month, then started up again at 300; this went on through June, July and August. September and October I was at 400 mg. November is the same (right now I'm the middle of a eight-day cycle). I finish out this month and then my condition will be monitored by MRIs every few weeks, unless something happens, always a possibility.

 

Worst part is all this time my fiance has gone through everything with me, i call it my "gift and my Curse" I have come to appreciate my life more taken less for granted...my biggest worry is her and how things will be the day Im gone. I few days ago I was given the news that I didnt want to hear....but yet again I feel inspired reading all these stories. Just stay strong appreciate the little things!

 

bugs_mommy
Posts: 24
Joined: Dec 2012

my husband passed january 29th at 8 pm....

The night before he was doing soo good! he moved his right leg for the first time in a month, he was trying to climb out of bed, he was answering my questions and even smiled at me, I got to spend one last night sleeping beside him.

The next day around 11am I had noticed his knees and feet and elbows were purpleish, and cold so I calleD the nurses in at the hospice to see what was wrong, they said its called motling, when the body can circulate enough blood to those spots..next thing I knew 12 noon his pupils were big even with light in them.

Around 2pm the doctor came in and said he had days, that's it. So I called everyone in. then around 3 pm the nurse said she will be surprised if he makes it the night. so his 9 year old daughter comes in to say goodbye to him. by this time his eyes were rolling in his head, he was breathing so fast! 

My 2 year old was at a babysitters so asked a family member to go get her so she can say goodbye.. cory was looking so bad told him to hang in a little longer for ouaby girl

bugs_mommy
Posts: 24
Joined: Dec 2012

our baby girl... she made it just in time to say bye, she climb in with him kissed his nose said love u and bye. she got off the bed and layed on one side and my mother in law layed on the other side.

730 pm told him its ok to go, we will be fine here when he is gone kept saying love u over and over again..I said to him u need to worry so go. it was the hardest thing had to do but knew he was holding on for me!

His eyes stopped rolling and settled on me. he looked into my eyes as he took his final breaths...

maca2004
Posts: 13
Joined: Jan 2013

what a moving story. so sorry to hear of your loss. may your husband rest in peace. 

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Absolutely heart wrenching. Watching your children having to say goodbye, then seeing your husband die.....this is so wrong. It's not supposed to be this way. I'm so very sorry for your pain and the loss of your husband and the father of your children. Im crying for you, for your family, for me, and for our friends here on CSN who have lost and are losing their loved ones. May God give you strength and grace and peace for these days ahead.

When my son David died, I laid next to him like your mother in law did and I held him in my arms one last time. He was 29 years old.

Love and blessings,

Cindy in Salem, Oregon

janellie's picture
janellie
Posts: 18
Joined: Aug 2011

Cindy,

I have followed your story and David's life on this site.  I left for quite a time after losing my father so quickly but have come back to catch up with all the "family" members who supported us and prayed for us.  I CANNOT imagine how you square each sunrise without David.  But I pray you will find a way to go on and honor his life and spirit.

I am throwing myself into fundraising, and research and really no longer work for a check....but donate most of my company to LLS and other forms of research that have great success and cross over drugs.  I don't know how you will do it, but i'm confident you will

Much love,

 

Janelle

jalu
Posts: 58
Joined: Jan 2013

...all over my keyboard.  I'm so sorry.  No words can comfort.  No words can console.  Time will help.

I know you are suffering -- you've been so strong.  Your husband lives on through his children -- that is the way it should be.  

May God bless -- know you are not alone.   

bugs_mommy
Posts: 24
Joined: Dec 2012

thank u everyone for ur kind words :) it was very hard to see him die, everynight it gets harder for me, but my baby girl makes my days go by, she makes me laugh sp much i just love her and i will miss my husband each and every day :)

janellie's picture
janellie
Posts: 18
Joined: Aug 2011

I had this same experience with my father....I was following your thread and wanting to share with you the signs that would come and the last hoorah is definitely one..and is normally just before the end.  Miraculously they perk up and often talk, eat and accomplish tasks unheard of just days before.....That last time with my dad was our most fun....he was engaging, silly, fun, snacking, drinking and frankly we told him to pipe down and get some sleep, but we definitely laughed, had fun, shared a glass of wine, and then the next day.....the sky went dark.  I think God gives the living the last hoorah, so we can remember and enjoy them.  I pray for you and your baby.  I cannot imagine having to lose a husband and the father of my children.  I lost both of my parents prematurely and yet, I know it does not compare to the loss of a spouse or child.

God bless you and your sweet child.

 

Much love,

Janelle

Susan M.
Posts: 8
Joined: Feb 2013

I am new to this forum, but I wanted you to know that you and your babies are in my thoughts and prayers.   My husband is 63 and I am still somewhat in shock to realize that I will be losing him before long.   But to lose a young husband with young children, my heart bleeds for you!  My sister died early from breast cancer, leaving behind her loving husband.  They had two young children at the time.   It was very hard.  Very hard.  I hope that  you are surrounded by a lot of loving family, friends and support.

I am so sorry, so sorry!

bugs_mommy
Posts: 24
Joined: Dec 2012

thank u susan.m .

everyday is another day, but my 2 year old still talks about him which i think is great :)

jbaumgarten's picture
jbaumgarten
Posts: 2
Joined: Feb 2013

I don't know if you still check this network but my experiences about your husband are similar to mine.

After his first Surgery he kept talking about how beautiful it was on the other side. The surgeons in the room laughed at him and told him it was because of the medication.

But before his Surgery, he received a blessing and received a sacred and spiritual manifestation which calmed him in preparation for his surgery. He told me that as he was coming back out of anesthesia, he spoke about how beautiful life was on the other side and his family...many that had passed on were also there to prepare him for what was to come. They were all the same age if u will (20-25) and as he came back, he began to excitedly speak of the things he saw and especially how we all are brothers and sisters.

Since then he relates to this experience as a confimation of the love of God and the power of love that comes from that divine world on the otherside. He has also seen the resurrection of some of those persons who have passed on. 

These are his words:

"Is there Life after Death? Yes. I have already been there and have seen all our brothers and sisters that have already passed on. 

How? Think about it when you are near to death and your hope for continued existence becomes a reality and everything you have not been taught in religion is made more plain in the life beyond. That hope and faith still continues without our bodies to the other side where all answers and agency are still alive. And I will also add, that a Pure Repentive Life is a Life worth Living in Eternity."

Please consider these words as a feeling of hope. Though we suffer as in Christ, we all will return again, and with gratitude... hold our loved ones in our arms again.  

JBAUMGARTEN

bugs_mommy
Posts: 24
Joined: Dec 2012

thank u jbaumgarten for sharing that with me :) its been almost two months since cory passed and the only real memory i have of him is the last day when we were looking at each other while he took his last breath :( and i dream of him but when i do its bad he is sick and so much worse then he really was, when will i get the good dreams, the happy moments we had of each other ? i need to know he is ok where he is i need to know!

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