Father Dying of Brain Tumor - Looking for information

[Dolores]

Hi Everyone
Our family has been dealt a terrible blow this Christmas season. My father has been diagnosed with a brain tumor which is a matastisis of his kidney cancer. He is currently in Douglas Fir Lodge being given 6 months or less to live.

I am not looking for sympathy, I am wondering if anyone out there has been or is in a similar situation and can help me to understand what is happening to him. I am looking for answers as to how much time he has as well as responce to steroid use etc.

If you have any experience with this please post your experience so I can be helped to understand what to expect etc.

Thanks and Merry Christmas to all

[ferri]

i'm very sorry to read this Dolores.

[CoffeeCanuck]

Have a sit down with the nursing staff on DF. They are very caring, compassionate, knowledgable, and will certainly be up front and honest, in a supportive manner. The one piece of advice I will give you is, be as involved with your dads needs as you can be, specifically his pain control. Have you talked with your Dads Doctor?

~D

[crash 99]

Have a sit down with the nursing staff on DF. They are very caring, compassionate, knowledgable, and will certainly be up front and honest, in a supportive manner. The one piece of advice I will give you is, be as involved with your dads needs as you can be, specifically his pain control. Have you talked with your Dads Doctor?

~D

I agree 100%. These caregivers rank among the best, and can help you immensely with understanding, what to expect, etc...

My heart's with you and your family.

[Dolores]

Have a sit down with the nursing staff on DF. They are very caring, compassionate, knowledgable, and will certainly be up front and honest, in a supportive manner. The one piece of advice I will give you is, be as involved with your dads needs as you can be, specifically his pain control. Have you talked with your Dads Doctor?

~D

My father was only admitted on Christmas Eve so a doctor has not even been notified!

I will have to wait until tomorrow to do this. I already am very involved with his pain meds but I question the sanity of giving him Decadron. When my father and I discussed a similar situation in the past, he has always told me that he does not want ANY type of medical intervention. My feelings are that if he knew that he was dying (he has been told but he doesn't seem to remember this) he would not want anything done.

We lost my mother on January 15th of this year and I feel that if he knew that he could be with her again he would tell me to stop everything.

I guess what i am wrestling with is that I feel as if I am not honoring his wishes and that I am only prolonging the inevitable and that he would not want this if he was aware. He can speak but his short term memory seems to be affected by the tumor.

I am considering removing him off of the Decadron but I know that when he is removed he probably will not be here with us for very much longer. I am having a hard time dealing with "pulling the pin" on him and I guess I am still holding out hope that a cure can be found! I know that it isn't going to happen but that is how I feel.

Please if there is anyone out there that has had a similar experience, I would love to hear from you so I can understand things a little better.

[CoffeeCanuck]

My father was only admitted on Christmas Eve so a doctor has not even been notified!

Gotcha, that is somewhat understandable, tho incredibly frustrating.

I will have to wait until tomorrow to do this. I already am very involved with his pain meds but I question the sanity of giving him Decadron. When my father and I discussed a similar situation in the past, he has always told me that he does not want ANY type of medical intervention. My feelings are that if he knew that he was dying (he has been told but he doesn't seem to remember this) he would not want anything done.

I'm glad to hear you are very involved, because that is what both you and your dad need. We all have wishes about how we want to be treated when we are dying. I think it's wise to heed those wishes if at all possible. (Some wishes are not, as I know many people who wish to be assisted in ending their life.) I am not a nurse, however I am in the healthcare industry and I have been with many, many dying people. I urge you to talk with the nurses on DF as well as your dads doctor as soon as you can. In my experience, I have seen dying people in excrusiating pain near the end, for a variety of reasons. Doctors who dont properly perscribe adequate pain control, Nurses who wont give it as needed because they feel it will end their life, (hard to believe but true), family members who dont agree for whatever reason on the degree and dosage of pain control, and in rare instances, patients themselves. My personal philosophy is, not one person should die in pain, not one. I have seen people die in agonizing pain and it's always ripped me up and made me very angry.

I can understand your dad not wanting any medical intervention, however, did he discuss the use of pain meds if he was in debilitating pain? I'm thinking of my own dads wishes which are the same as your dads by the sounds of it. He wants no heroics, no life support, etc, but if he is in pain, he wants to be pain free.

We lost my mother on January 15th of this year and I feel that if he knew that he could be with her again he would tell me to stop everything.

That is totally understandable. How old is your dad Delores?

I guess what i am wrestling with is that I feel as if I am not honoring his wishes and that I am only prolonging the inevitable and that he would not want this if he was aware. He can speak but his short term memory seems to be affected by the tumor.

Yes, it could very well be the tumor that is affecting him stm. Because he is not aware for the most part, it is up to you to advocate for him and what is best for your dad, and sometimes that can be a very heavy task. You will know deep in your heart what is the best decision, however I again urge you to talk to the DF nurses.

I am considering removing him off of the Decadron but I know that when he is removed he probably will not be here with us for very much longer. I am having a hard time dealing with "pulling the pin" on him and I guess I am still holding out hope that a cure can be found! I know that it isn't going to happen but that is how I feel.

Aw Delores, please dont feel like you are 'pulling the pin' on your dads life, because you simply are not. This is very much out of your hands. What you can do is be with your dad as much as you can, love and support him, advocate for proper pain control and be with him in the end. We all hope a cure will be found, and they are for many diseases and afflictions every day, sometimes just not in time for some people. My mom passed away 4 yrs ago. She originally had breast cancer and it went into her lungs, bones and finally into her brain, which is very common. Because I work with dying people, I knew there was no way my mom was going to die in pain. I had discussed everything with my family and told them the pain control could in fact assist her in dying, because it slows respiration, but, BUT, she would not be in pain. She too was given 6 months to live, however she died soon afterwards due to getting necrotizing fasciitis, which is the flesh eating disease. It took us all by complete surprise, but now 4 years later, I'm glad she went so quickly and relatively pain free, though I still deal with guilt of not being at her side when she passed. (The nurses at the hospital did not call when she started to rapidly fail, and yeah I'm angry about that.

Deloris, I know Cottonwoods has a wonderful councilor onsite. I really believe it would also help you to go and talk with them, they really do listen and are very compassionate.

Please if there is anyone out there that has had a similar experience, I would love to hear from you so I can understand things a little better.

[Dolores]

Thank you CoffeeCanuck for your insight.

To answer your question about how old my father is he is 69. He will turn 70 in March.

As far as pain medication is concerned, I will give him everything that he needs to control any pain. I do not want him in any pain and as such I will scream for more everytime he needs it.

I did have a talk with the nurses at DF and one of them gave me a great deal of insight and advise regading his situation. I am going to see his doctor tomorrow even if I have to sit there all day.

I need some answers and I need to know that if I remove him from the Decadron that he will be OK (relitively speaking) His family doctor is amazing and I believe that she will only have his best interest at heart.

Thank you again for your time. it is wondeful to know that there are still people in this world that care about others.

[CoffeeCanuck]

69 is far too young to die, however it is out of our hands, and I'm sure most of us would rather go on to our next life, rather than exist here with pain and a poor quality of life, and to have a cherished one waiting for us on the other side, well what can I say.

I'm so glad you had a talk with the nurses on DF, and also so glad you are there to speak for your father when he is unable to speak for himself. I'm not sure how experienced you are in pain meds, and hopefully your dads doctor will prescribe accordingly. Too many people think that getting pain meds every four hours is sufficient, and in the case of severe pain, often it is not. Again, I'm not an RN, however I've seen many patients properly prescribed and their pain is under control by dosage and frequency, sometimes every 2 hours, along with prn's for breakthrough pain when it's needed. You will want your dad to be comfortable all the time, dont wait untill he is in a lot of pain before asking for something more.

I'm soooo sorry you and your dad are going through this challenging time and my thoughts and prayers are with you both.

~D

[steven lloyd]

I'm very sorry for your pain Delores.

[steven lloyd]

I'm not sure how experienced you are in pain meds, and hopefully your dads doctor will prescribe accordingly. Too many people think that getting pain meds every four hours is sufficient, and in the case of severe pain, often it is not. Again, I'm not an RN, however I've seen many patients properly prescribed and their pain is under control by dosage and frequency, sometimes every 2 hours, along with prn's for breakthrough pain when it's needed. You will want your dad to be comfortable all the time, dont wait untill he is in a lot of pain before asking for something more. ~D

I am totally with Coffee on this one (I think). There seems to be some protocol by doctors in delivering pain medication, no matter the prognosis of the condition. Doctors seem to be worried a patient will become addicted to the drug. Excuse me, but if I am dying the last thing I am worried about is becoming addicted to a drug. If I’m asking to pass on to the next world without pain then please give me that right.

I’m very sorry Delores that you are in this position. Not only are you having to deal with the potential untimely passing of your father, you might also have to step up and advocate for him. I don’t know how much time he has, and really none of us do, but I’m sure you’ll agree he deserves to pass as comfortably as he can (if it is indeed his time).

I’m still a ways from that moment (I hope) but I can say I’ve given that moment considerable thought (because I am getting closer). At 69 your father is significantly less than twenty years ahead of me. In considering that time (of passing), I really believe it will be much more difficult for those we leave behind. However, I also firmly believe this is not the end of the adventure – for whatever comfort that might give you.

If I’m wrong and this is just simply the end, then I still want to go as comfortably as I can (even doped up if necessary). To have memories to reflect on and family and/or friends to see me before I go will be a bonus. We are all going to die one day. I don’t believe that is the end, but even if it is it seems like you’re likely a very good person and I’m guessing your father had at least some small role to play in that.

[Dolores]

Hello Everyone yet again

I just wanted to thank you for all of the wonderful advise.

My father passed away on March the 20th. He managed to make it to his 70th birthday and for that I am grateful. He is now with the woman he loved, my dear Mom, more than anything as she passed from this world in January of 07

His obit appears in Castanet for anyone to read.

His name is Pierre Adam

Thank you all again.

[ferri]

so sorry Dolores. another big hug to you.

[Dolores]

so sorry Dolores. another big hug to you.

Thanks Ferri

When it rains it pours eh!!!

[ferri]

it sure does! too much stuff going on for you right now i would guess. but hey, i always think...get it over with all at once and move on.

[Saxon]

Sorry to hear Delores, I am lucky to still have both my parents, I cant imagine losing them it's got to be hard... My heart goes out to you and yours at this time, I recently lost my Grandma, I was often moved to tears and some days still am, it's in those times I try to remember that my sadness is not for her but for MY loss, for I know now she too has gone home and is with the love of her life ..and then there's the good memories we have of those who pass, the meaningful, the funny and the rest...and a sense of humility and a humbling in the knowledge that we were lucky enough to know them..

Peace