Near the End?

 

On 5/16/2008 Jilby wrote:

I posted yesterday that I wished my Dad would move in with me. He had his 2nd ressection done in April after we learned of regrowth this past Feb. June 6 will mark 1 year ago when his journey started.

Anyways, my dad was going to have a 2nd dose of radiation, they felt he was strong enough and he did really well the first time. It was suppose to start yesterday, but he starting declining this week. Major right side weakness. So we took him in for a blood count today....and they did a CT scan...he couldn't even walk...this is the first time we needed a wheel chair. The poor guy! I feel so bad, he's very aware of the changes happening and unable to speak at all. I literally had to help him to the bathroom and to get dressed today. This entire time he's been able to ALL of this on his own....but things have changed.

The CT Scan revealed so much swelling on his left side that it's pushing over to his right side...the normal brain. He can't have radiation with a brain swell like this. He has opted out of any oral chemo or any chemo for that matter.

Today we talked about Pallative Care...possibly hospice?  They wanted to admit him today to Pallative care floor...and I refused and took him home. Home..to his house, where he wants to be.

What am I thinking? I can't be a 24/7 caregiver and I'm not sure anyone in our family can. But I just felt so bad for him and I couldn't dare put him in the hospital to die. We were told things could go really bad for him this weekend...but it also may get better with the upped dose of steroid. I am hoping that works and he at least gets his strength to walk.

I just don't know...the doctor said we are coming to the end of this journey and those words have just crushed my heart of any hope. How in the world do I stay postive? He is not living a quality life that he has stated...and it's obvious he's not getting any better...maybe a little...but not the quality I know he's hoping for.

It's just so hard. I am having a social worker call me to set up visiting nurse etc for him. I'm going to try my hardest to try and keep him at home...I wish he'd come to my house though...but I keep thinking how this beastly cancer has taken so much from him this year, his job, his ability to speak, play his guitar in his band and belt out the Elvis Tunes that he has sung since I was a little girl. He can't go fishing or even go outside to his porch and watch the sunset. How can I take him out of his home...it's all he has left.

Thanks for listening...I pray for all of you beating this disease, the people who are just starting, the ones in the middle and those of us near the end. I also send major hugs to all who have already lost.

Jill

Dear Jill,

My heart and prayers go out to you. Yesterday  was the 1 year mark of my 18 year old son was diagnosed with giloblastoma multiforme IV. We had a long year and right now he is doing well. He had two resections, and a shunt put in place. 36 weeks of chemo and radiation. Followed by a different combo of chemo and radiation. Right now I am not in the place that you are in. I know eventually we will be. I will pray for you and your family. It is hard to know what to do. We have and did have well meaning people tell us what to do all the time. But you have to listen to your heart and most of all respect his wishes. My son and I have talked long and hard about what may come. This is a cruel and unpredictable cancer.

Prayer is everything it's what keeps us going, not looking back to all the things that he can not do anymore all the dreams that will not come to be. As a caretaker myself it is draining and it's hard because we carry the burden. Take care of yourself or there will be no one to take care of him.

Let others in and let them help. Most of all savor the time you have.

Lynn

 

Thank you for all of your messages. They mean so much, I'm in tears. It's been a long weekend. My dad is only getting worse. We have increased the dosage of Decadron and it seemed to do nothing. He is getting so very weak...he can't make it to the bathroom. He can't walk, we have a milk jug cut open for him to pee in. #2 only came once so far and we had to clean him up. I am just waiting for tomorrow to come so I can get in contact with Medicare the VA facitlity and the Social Worker that is suppose to call me. I almost had to call 911 on Sat. night because while I was helping him to the bathroom, he fell down. Didn't hurt himself, but I was there..alone and could not lift him. Thank GOD I was able to get a hold of my step sister and husband and they came over quickly and we did it together. We didn't call 911...we are trying so hard to keep him home...but I know in my heart that isn't possible. He is refusing the decadron now, he only takes it in the am and pm...not in between....we were told on Friday that his disease has taken a different path that just 10 days ago...I think it's taking over regardless of any steroids. He's still on the seizure meds...but I'm so heartbroken. He's still in there and the look on his face is so sweet. He is smiling and is so thankful for everything. He is trying SO hard to do things on his own. He is still eating w/his left hand...his right side is pretty much paralyzed...he's drinking and peeing. That's a good thing. He can answer yes/no questions...but today he kept answering No...so I'm wondering if he's really understanding? I looked on the brainhospice site and he has many of the symptom for 3-6 weeks...even 2-3 weeks...even 1-2 weeks....it's so hard to know.

On top of ALL of this, my husbands Grandpa is waiting to die...end of life for him too....he fought so hard to beat his many cancers and heart problems...but it is his time to go. So..I got a few hours of relief today so I could go say Goodbye to another family member.

I feel like I'm floating on air right now.

I know in my heart I've done what I can and I know he appreciates me and loves me so. I am just praying for a uneventful evening tonight...I'm staying there w/my brother and tomorrow will be OK...it will work out..it has too!!!

I told my husband today I was wishing he would of passed last night in his favorite chair..peaceful. You know you've gone thru so much with a person when you are praying for them to go. I just hate to see the suffering in his eyes....

I'll be in touch!!!

Jill

Jill, I posted to your previous message, so no need to repeat what I and others have said... Hospice can be a godsend to you and your family. Another theme here has been the use of steroids. They can make a big impact on the brain swelling. With my mom, we went through a 6-month period of "1 step forward, 2 steps back". She went through a period of rapid decline (weakness on the affected side, unable to process day to day tasks, falls, fogginess, lethargy). Then she seemed to level off and has now compensated for many of the losses. She really could not live by herself, but is doing pretty well living in our home. One day at a time.

Hi Jill,

My prayers are with you.  I know all too well what you are going through right now.  My mom, 49yr old, dx GBM IV on 3/28/08 is now in hospice.  She was admitted by the ER on Monday 5/12/08 after she could not get rid of a headache she had the entire weekend.  Hospice is truly a Godsent!!  she is not in pain and she's comfortable.  She's not always in her right mind, but at least she is not crying in pain!!  I understand you want him home, but sometime it's safer from them to be where they will have 24 hour care.  Please look into it.  From my understanding, hospice will provide 24 hr care in your home if need it.  But just follow your heart and do what you feel is best for him and your family.

 

You along with everyone else that is fighting this monsterous disease are in my prayers!!

May God Bless You!

 

Kim

LJill,  I have been busy with my dad and have not had a chance to get on in a few days and was shocked by a later post which I responded to. 

 

I am so sorry.  This just sucks, if I may say.  My other reply is kind of ranting because I just got the news of how ill your father was and did not give myself s chance to reflect a bit. (about hospice----I was shocked)

So I almost don't know which one I want you to get first, lol.

Listen, you ARE an fantastic daughter!  You fathers must love you soooo much.  Just the fact that you are constantly on this forum with all of us other crazys must say something!

Your father knows that you, Jill, never gave up on him!  You are fighting as hard as you can for him.  You knew going into this that it was an evil battle, with no survivors.  But that did not stop you.......you have listened to every doctor and every person that would pay any attention to you, just to do the right thing for your dad.  And maybe he can't say it, or maybe he has.....your dad is sooooo gratefull to you Jill!!!!   You are much stronger than a person usually is, and your dad is blessed to have you by his side.

Trust me, I know it's tough......but no one could ever say that you didn't care, or that you did not do your best!!!  I am praying for you and your dad.  I pray for your dad to be peaceful and for you to feel peace!  You have done all that you can do now Jill and your father is sooooo proud of you!!!!!

~Bunky

I don't know if we are allowed to give out e-mailed on here, but mine is

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Get intouch with me....I am very worried