Need Tips To Stay Positive....

Hello,

My dad just went thru his 2nd surgery for GBM. He is SO depressed this time and I don't know how to snap him out of this. He seems like a completely different person.

When he was first diagnosed in July, 2007...he had surgery and did quite well. We kept the win all attitude and because the tumor was out, we just prayed that is wasn't going to come back. He had his complaints about the meds and that his speech wasn't perfect. His tumor is in the left temporal lobe close to the speech scensory. In January, his follow doctor appt. went well. The MRI was good. So, he thought he could scale back on some of the anti-seizure meds he was taking. He had weaned down off the steroid already (doctors approved that), but they never wanted to touch the seizure meds because he had two very bad seizures after the 1st surgery.

Well, in Feb 08 we learned of the regrowth of the tumor because his speech was getting worse. I immediately thought it was because of scaling back on the seizure meds. That was wrong, so they started him back on decadron. He tried the Temodar for the first time in March. You see, he opted out of that maintenance chemo and only did the radiation. He tolerated the Temodar w/no troubles at all. In April, he was having a very bad day and struggling...I was worried about a seizure again...(from scaling back on the meds)...well, we found out the tumor had grown quite a bit from Feb. Chemo did nothing. The tumor was big enough to have a 2nd surgery...which they did almost the following day. Not enough time to even think about what he was going to go through.

So that's where we are at. My dad lives alone and wants to be at his house. He lost his wife to cancer right before being diagnosed w/this tumor. He has been through so much the past 2 years...and I don't blame him for being unhappy. I know this tumor takes away the person you know...but it seems like it happened overnight. I know he won't take any more pills....so even a antidepressant probably won't be the answer.

How do you stay positive when you've been fighting this for 10 months and you don't get a break. Being that it grew back takes away alot of the positiveness from the start. Everything you read or even the doctors tell you eventually it will take over and there will be no treatments and he will die. Knowing that, how can you stay upbeat? Especially when he's feeling so down and can't talk. He's very negative w/everyone in the family. We are trying so hard to keep things normal in his life...but we also are getting worn out. I dont' know how long he can be at home alone....he won't come and stay by anyone. It's been offered many times.

You know, when we first started this journey in July I was reading these boards and thought we were pretty lucky. Dad had a good quality life...of course now that we are in re-growth stages....I'm getting the reality of how ugly this disease really is.

My dad needs something to look forward too....and so do I!

Thanks for reading!!!

Jill

You know, after I just re-read my post...I realized he has SO MUCH to be happy for. He is walking, eating and using the bathroom on his own. Some people aren't that fortunate...to go thru TWO major brain surgeries and beable to function the way he is frankly amazes me. Of course, I am NOT the one going through all of this either. I just want him to appreciate what he still has...because I know this disease will take over. And he really has gotten a lot of quality time. How do I try to make him understand that???

The biggest deficit for him is his speech...and that is killing him. My dad was a lead singer for a band most of his life. 50's and 60's...he was singing up until the day this all started. HE LOVES HIS BAND.

What can I do to get him to realize he still has time to look forward too?

I guess I am just frustrated with him. I want him to be happy....and I want to help him. I'm just running out of energy!!!!

Jill

On 4/24/2008 Jilby wrote:

You know, after I just re-read my post...I realized he has SO MUCH to be happy for. He is walking, eating and using the bathroom on his own. Some people aren't that fortunate...to go thru TWO major brain surgeries and beable to function the way he is frankly amazes me. Of course, I am NOT the one going through all of this either. I just want him to appreciate what he still has...because I know this disease will take over. And he really has gotten a lot of quality time. How do I try to make him understand that???

The biggest deficit for him is his speech...and that is killing him. My dad was a lead singer for a band most of his life. 50's and 60's...he was singing up until the day this all started. HE LOVES HIS BAND.

What can I do to get him to realize he still has time to look forward too?

I guess I am just frustrated with him. I want him to be happy....and I want to help him. I'm just running out of energy!!!!

Jill

You do have  a lot to be thankful for, you also have a lot to be frustrated about.  I know you just want your dad back as he was before all of this happened, as any of us would.  All I can say is be grateful for the good days, unfortunately when this terrible disease is present in our lives, all we have is uncertainty.  It is imperative that he is as optimistic as possible, and I know that is difficult with his speech effected.  I had esophaegeal cancer four years ago and was given a very small chance of survival, (20%) and I am convinced that my thinking always about what I was going to do next year, and my daughter getting married in the fall, and I wanted to vacation in a certain spot helped me think beyond the cancer, chemo and rad. and helped me survive.  Cancer at its worst does not always mean that you will die.  People beat the odds everyday.  Although, I admit that I dread the CT scans and always pray that they will be clear.  But that is something I will always do. Test the waters with your dad talking about the band and when he gets well enough to sing with them again, if it upsets him, don't mention it again, but it might get him thinking about tomorrow, not how sick he is today.

Other than those thoughts, all I can do is pray for you and your dad.  Also, I admire you for the wonderful job you are doing taking care of him.  Remember to take care of yourself also.  Stay strong!!

Gerri

On 4/24/2008 Jilby wrote:

Hello,

My dad just went thru his 2nd surgery for GBM. He is SO depressed this time and I don't know how to snap him out of this. He seems like a completely different person.

When he was first diagnosed in July, 2007...he had surgery and did quite well. We kept the win all attitude and because the tumor was out, we just prayed that is wasn't going to come back. He had his complaints about the meds and that his speech wasn't perfect. His tumor is in the left temporal lobe close to the speech scensory. In January, his follow doctor appt. went well. The MRI was good. So, he thought he could scale back on some of the anti-seizure meds he was taking. He had weaned down off the steroid already (doctors approved that), but they never wanted to touch the seizure meds because he had two very bad seizures after the 1st surgery.

Well, in Feb 08 we learned of the regrowth of the tumor because his speech was getting worse. I immediately thought it was because of scaling back on the seizure meds. That was wrong, so they started him back on decadron. He tried the Temodar for the first time in March. You see, he opted out of that maintenance chemo and only did the radiation. He tolerated the Temodar w/no troubles at all. In April, he was having a very bad day and struggling...I was worried about a seizure again...(from scaling back on the meds)...well, we found out the tumor had grown quite a bit from Feb. Chemo did nothing. The tumor was big enough to have a 2nd surgery...which they did almost the following day. Not enough time to even think about what he was going to go through.

So that's where we are at. My dad lives alone and wants to be at his house. He lost his wife to cancer right before being diagnosed w/this tumor. He has been through so much the past 2 years...and I don't blame him for being unhappy. I know this tumor takes away the person you know...but it seems like it happened overnight. I know he won't take any more pills....so even a antidepressant probably won't be the answer.

How do you stay positive when you've been fighting this for 10 months and you don't get a break. Being that it grew back takes away alot of the positiveness from the start. Everything you read or even the doctors tell you eventually it will take over and there will be no treatments and he will die. Knowing that, how can you stay upbeat? Especially when he's feeling so down and can't talk. He's very negative w/everyone in the family. We are trying so hard to keep things normal in his life...but we also are getting worn out. I dont' know how long he can be at home alone....he won't come and stay by anyone. It's been offered many times.

You know, when we first started this journey in July I was reading these boards and thought we were pretty lucky. Dad had a good quality life...of course now that we are in re-growth stages....I'm getting the reality of how ugly this disease really is.

My dad needs something to look forward too....and so do I!

Thanks for reading!!!

Jill

Jill,

 I can tell you are very tired.  You seem discouraged and frustrated.  All of this is very normal.  My sister has been fighting GBM IV since May 2005.  She went through the surgery, chemo and radiation and was recovering when her husband, her caregiver, dropped dead of a heart attack in June 2007.  She slipped into a deep depression and we were unsure how this was going to affect her prognosis.  We had family members staying with her taking care of her and at the same time she had to move because she could no longer afford the home she shared with her husband.  It's been a tough road.  It IS a tough road.  When you are feeling overwhelmed, the best thing for you is to get away for a while and go do something for yourself.  Find someone to sit with your loved one and get away to cry or to scream or to do something to get out of the situation until you can gather your thoughts and your emotions again. Thats what we do.  My other sister is this one's primary care giver now.  She lives 45 minutes away from my ill sister.  My ill sister is now in an apartment that assisted living arrangements.  She REFUSES to live with anyone which is very frustrating for her caregivers.  However, we have to understand this is how she wants it.  So, we have the neighbors alerted and the office is alerted to keep an eye out when we are not around.  They have the necessary phone numbers in case something were to happen.  We are lucky that way.  It takes several people working together as caregivers so each can have a break when needed. 

Your emotions are totally normal and its OKAY to feel how you feel.  The key to staying positive is to take a break when you are feeling overwhelmed.  It doesn't take the sadness of what's happening away but it helps to regroup your thoughts to get back in there and deal with it some more.  And, when my sister starts to get negative or she starts to cry and sob, I have to make jokes and say things to make her laugh just so I won't cry.

My thoughts and my prayers are with you.  You are not alone in this.

Amy

On 4/24/2008 Jilby wrote:

Hello,

My dad just went thru his 2nd surgery for GBM. He is SO depressed this time and I don't know how to snap him out of this. He seems like a completely different person.

When he was first diagnosed in July, 2007...he had surgery and did quite well. We kept the win all attitude and because the tumor was out, we just prayed that is wasn't going to come back. He had his complaints about the meds and that his speech wasn't perfect. His tumor is in the left temporal lobe close to the speech scensory. In January, his follow doctor appt. went well. The MRI was good. So, he thought he could scale back on some of the anti-seizure meds he was taking. He had weaned down off the steroid already (doctors approved that), but they never wanted to touch the seizure meds because he had two very bad seizures after the 1st surgery.

Well, in Feb 08 we learned of the regrowth of the tumor because his speech was getting worse. I immediately thought it was because of scaling back on the seizure meds. That was wrong, so they started him back on decadron. He tried the Temodar for the first time in March. You see, he opted out of that maintenance chemo and only did the radiation. He tolerated the Temodar w/no troubles at all. In April, he was having a very bad day and struggling...I was worried about a seizure again...(from scaling back on the meds)...well, we found out the tumor had grown quite a bit from Feb. Chemo did nothing. The tumor was big enough to have a 2nd surgery...which they did almost the following day. Not enough time to even think about what he was going to go through.

So that's where we are at. My dad lives alone and wants to be at his house. He lost his wife to cancer right before being diagnosed w/this tumor. He has been through so much the past 2 years...and I don't blame him for being unhappy. I know this tumor takes away the person you know...but it seems like it happened overnight. I know he won't take any more pills....so even a antidepressant probably won't be the answer.

How do you stay positive when you've been fighting this for 10 months and you don't get a break. Being that it grew back takes away alot of the positiveness from the start. Everything you read or even the doctors tell you eventually it will take over and there will be no treatments and he will die. Knowing that, how can you stay upbeat? Especially when he's feeling so down and can't talk. He's very negative w/everyone in the family. We are trying so hard to keep things normal in his life...but we also are getting worn out. I dont' know how long he can be at home alone....he won't come and stay by anyone. It's been offered many times.

You know, when we first started this journey in July I was reading these boards and thought we were pretty lucky. Dad had a good quality life...of course now that we are in re-growth stages....I'm getting the reality of how ugly this disease really is.

My dad needs something to look forward too....and so do I!

Thanks for reading!!!

Jill

Jill it was heartbreaking to read your post.   You have all been through so much this last year I am sure you feel as if you are spinning out of control.   You would be amazed at the help that is out there for care givers such as yourself.   You have to take care of you first before you can even think of taking care of your Dad.   Your Doctor at your Dad's hospital can steer you in the right direction but you do need help, ask for it, demand it

as you need to share your story with those that can help you AND help with the care of your Dad.

This is hard for me to say,here goes.   Your Dad has made decisions, decisions that I am sure went against all medical advice regarding his treatment and now the consequences are evident.   As you know those decisions are affecting his family as well.  

The only advice for you that I can offer is stay in the moment, try not compare your ill Father with the well Father, also take solice in the fact that if you have given him happiness for a second of the day, it was better than none at all.   Love him a lot, it does wonders.   Try and stay positive, the tools are out there for you to use to help you.

I write from experience.   I am a GBM survivor  diagnosed June of 07

surgery July 07.   My Doctor sucessfully removed all of my nasty bit (I will not acknowledge its name) as he said "it is not like plucking a cherry from a bowl of jello" we have something similar to the night sky in you brain where the stars are cancer cells.... 

we have been chasing stars since July, still going strong.   Yes this is a dibilitating thing to have.   As difficult as it may be try to look at the positive maybe with God's help your dad will follow.

Well wishes to your and your family Jill.

Frances Joyner 

Gerri—Thank you for the reply. I’m glad you have been so very successful so far in your cancer journey. I know one can never rely on the doctors prognosis. I do have to say though that so far they have been pretty right on as far as how this thing would progress. I think we were more upbeat and positive after the 1st surgery, hoping and praying we’d be the miracle and that this tumor would not resurface. Now that’s it’s back and we are seeing more deficit, it is hard to maintain that positive attitude. I think I’m just really scared on how this is going to take place and how were going to manage all of it…deep down I know that it will work itself out and we’ll cope just like we have been.

Frances—Thank you for the nice message. I take all of your advice quite wisely being that you are the patient. I know inside my dad is hurting so badly and this disease has taken so much of his life away from him. Anytime I get frustrated, I try and remember that. I’m happy to hear that you are a fighter and I hope things are going well for you. My dad’s journey started in June 2007 also….but we didn’t find out for sure what we were dealing with until July when they took it out. I do have to compare my dad though to sick vs healthy, because I know he wouldn’t be acting this way if it wasn’t for that tumor. He is a very positive, upbeat and happy person. Go with the flow type and this 2nd surgery has changed that. We were VERY positive and we were living each day like the next would be even better. Having this tumor resurface has really changed the mood. (with everyone). My dad seems so much more paranoid with everyone around him, including me and he is more easily frustrated with his speech and surroundings. He has told us MANY times that he does not want to live his life taking a gazillion pills and walking around like a zombie…those are his wishes and we know that. However, this disease requires a lot of meds to keep things good and it is hard for us to keep it all under control. Sometimes I just want to let nature takes it’s course….and put it into God’s hands. Ultimately it is and we can’t change that. However, we still need to take care of him and his home and everything else that is going on. Thanks for the response, it certainly helps to come out here and “talk” to people who “know” what is going on.

Amy—Wow, your poor sister has been thru a lot too! Just when I think I have it tough, I hear a story like yours. That must be so hard for her to of lost her husband during this journey of her own. I certainly can’t blame them for not wanting to live with anyone, but it makes it very hard on the family who is trying to be the caregivers. I also live 45 mins from my Dad. I feel better knowing that there are others who have this disease that insist on being on their own. I wish I could just be there 24/7 to take care of him. But I have a family, a home a job that I need and it’s not that easy. My kids are elementary age which is a key time in their life, I am trying to keep all of this balanced and not disrupt their lives too much, they need their Mom. And I need them, I had them for a reason. I think I am just finally figuring out that I can’t do everything and that I do need to reach out for help w/my dad. We are getting help now from my dad’s brother and sister and we’ll just take it each day, hour by hour to get through it.  Thanks for saying sometimes you need a break from it all…I feel guilty doing that, but I believe now it’s the best medicine for a caregiver. Good luck to your family with your sister, she seems like she has a great support system from all of you!