CancerCompass message board discussion started by Jilby on 5/16/2008 http://www.cancercompass.com/message-board/message/all,24113,0.htm Thu, 21 Aug 2008 00:00:00 GMT Thu, 21 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ 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 Jilby Fri, 16 May 2008 00:00:00 GMT Perhaps you should look into getting a power of attorney for his medical situations  - that would enable you to take your dad wherever you think he should be (including your house). It's practically impossible to manage things from far away for someone in your dad's condition. CaregiverScott Fri, 16 May 2008 00:00:00 GMT I do have Power of Attorney for Healthcare for my Dad. But making him come to my house  may just as well be putting him in Pallative care at the hospital. Plus I have two children that are 8 and 11...I'm not sure they need to be around this environment either. No matter what decision that is made, it's going to be hard. There is no good answer when you are at this point. But thanks for reminding me that I have that paper, I didn't realize I could use that to get him to my home.Thanks,Jill Jilby Sat, 17 May 2008 00:00:00 GMT Hospice can be very helpful in this situation, making regular house calls for at home care. If and when the situation calls for it, they can make the transition to a hospice location for the remainder of palliative care. Hospice is very different from a hospital, but either would likely be psychologically difficult for your father at first. Most people I know who have experienced hospice were very pleased with the environment. Your doctor should be able to coordinate with hospice to start at home care and most people find that insurance covers all the costs. Things like walkers and other equipment are often provided for free. Are the doctors attempting to control the swelling with steroids? Steroids can make a dramatic difference to symptoms such as these and there is no reason for your father to needlessly suffer. Maybe a dose adjustment would help? All the best to you and your father. Brandon-cg Sat, 17 May 2008 00:00:00 GMT Jill I'm not help here, but I understand your heart ache. Your dad sounds like my brother- remaining on his own in his home is so important to him also. BUT - with two small kids you must be realistic. As suggested - get on board with Hospice - they will be an amazing help. I dread the day when I have to make this decision and your story is another one of the heartbreaking messages that are so often posted here. Thank God for this community of support. They will guide you and help you sort this out.Hugs to you and your family.Eileen Wissis Sat, 17 May 2008 00:00:00 GMT Jil,I am so very sorry to hear about your Dad.  You are faced with horrible decisions and I truly wish there was some way to make things easier.  I agree that hospice could really help you at this point.  Please keep us informed and remember  you have friends here.God Bless you all.Connie Houston Wife Sat, 17 May 2008 00:00:00 GMT Follow your heart, you know what is right to do for you and your father deep down inside. We only get to do this once. I want my Mom (lung and stomach cancer stage IV) to live whatever way she wants while she is here, I want her to die in her home if that is her choice. It will be hard for me and my siblings (and kids) but I have alot more time than she does. That is kinda how I have to do it. My dad died last August, Mom used respite through hospice because she was so tired. They cared for him in the hospital while she rested. Up until then he had been at home. It was gonna be a day or two. He passed away two hours after she left the hospital. He died in the hospital without her. It really put her in emotional termoil. I don't want regrets like she has. Maybe I'll have to change my mind when it gets bad for her (and me). I'm gonna try my best to do what she wishes. I am scared and honored to be a part of Moms journey. I will pray for you and your Father. What a lucky man to have a daughter so full of love. Take care of yourself as well, Jilby.Maggie   MaggieBee Sat, 17 May 2008 00:00:00 GMT Jill: Maybe if your Dad's insurance will pay he can have an aide stay with him. Some insurances offer different coverage for the hours they will cover. I had my husband home for 2-1/2 months. I had to work but dropped to part time so I had the aide in the morning and if she stayed I paid her the additional amount. I came home in the early afternoon so he was never alone. When the Hospice Nurse recommended he would have to be admitted I only agreed if I was able to stay. They provided me with a cot and bedding.I wish you the best, and God watch over you all.Best regards Wilmabc Sat, 17 May 2008 00:00:00 GMT Hi there;  how  are  you  today: i  hope  all  is  going  okay  we  are  here  for  you  God  bless            FAIRY  DUST fairydust Sat, 17 May 2008 00:00:00 GMT Jill,  I'm practically in the same boat as you except with my mom who now lives in my home with my husband & I and 6 & 9 year-old!  It is so hard & some days I barely have strength to do anything or care about anything (like today!).  Whatever help you can get, look into it - whether it be hospice, home health, private agency aids.  Anything to help you.  Steroids could turn him right around - I've seen it in my mom.  Just 2 wks ago after Gamma Knife, she could not walk or feed herself with her right-side shaking so bad (she looked like a Parkinson's patient).  I had my old baby monitor in her room for 3 nights in case she needed anything - I was totally exhausted.  My poor 9-year old started crying in school for no apparent reason (highly unusual for her). This disease is soooo evil!  I received pieces of advice from others who have taken care of their parents & the one piece I hold onto is "no regrets".  I know I am doing everything within my power to help so when the day comes & mom passes on, I will NOT have one shred of "what if" or "should have"!  Whatever your comfort level is with your own personal situation, go with it the best you can & you won't have regrets either!  And most importantly, you are NOT alone! :0) Nikki Smilie Sun, 18 May 2008 00:00:00 GMT  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.JillDear 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  lmars31985 Sun, 18 May 2008 00:00:00 GMT 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 Jilby Sun, 18 May 2008 00:00:00 GMT 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. Louzda Sun, 18 May 2008 00:00:00 GMT 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 Kimba0612 Mon, 19 May 2008 00:00:00 GMT 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!!!!!~BunkyI don't know if we are allowed to give out e-mailed on here, but mine is--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- Get intouch with me....I am very worried  Bunkydarl Tue, 20 May 2008 00:00:00 GMT