OT - Brain cancer

[riu girl]

My father has brain cancer. Originally it was prostrate, then bone cancer now his brain. The last week has been a nightmare for him and my mom. Something has definately been going on with the brain cancer. His vision comes and goes, severe pain throughout most of his body, severe agitation, angry and he sees things that aren't there. He talks like he is drunk and makes no sense at all. It is sad. He has been in and out of pallitive care for months now but now the doctor feels he might not be able to come home again. My mother is determined to bring him home again, even if it is just for a few hours at a time. Seeing him is hard, he is not the same person. He seems to have very little control over his emotions/behaviours. But then at times, he seems almost like his old self. My mother is like a pillar of strength. She is managing amazingly well.

Question: Does anyone have any experience with this sort of thing and what should we expect next? We understand that his time left with us is very limited, I just want to be prepared for what we can expect next with his behaviours. I want to help my mother through this as much as I can. My mother is my best friend.

Don't worry about me. I am fine. He has been suffering immensely with this (physically and emotionally) for almost three years. Please don't think poorly of me for saying this, but I just want his suffering to end.
Suzy V.

 

[Anne MN]

My Dad had brain cancer. he died in jan of 1993. he was diag. in july of 1992. he was home for a while. his was in operable. when he was home, my mom had an aid to help. she is 5ft tall, my dad was almost 6 ft. he was fine for a while, but he got unsteady and with the chemo and radiation, it made all his hair fall out and lost a lot of weight. he ended up going back to the hospital in late dec and finally lapsed into a coma in jan and then passed 2 days later. he did have a DNR/DNI, and we had to fight my mom 3 different times to keep it in place.

 

[roseprincess]

riu girl,
What you see going on with your dad is pretty typical as the brain cancer progresses. His irratic behavior, confusion, slurred speech, etc. I have seen this about 17,18 yrs. ago when I worked on a rehab floor at a nursing home as a nurses aide. I took care of a person with brain cancer.

I'm sure it is very difficult to see your dad this way.
and prayers to you and your mom during this difficult time.


Rosemarie

 

[Laurajean1014]

My prayers are with you..............

 

[Stacey2grls]

It is so amazing that I read your post today. My mother died of brain caner 15 years ago today. She lasted 18 months from her diagnosis. It was a very hard road. In the end she wanted to go, even though she was only 47. Take care, and god bless you and your family.

 

[Anniegirl]

My Mom died of brain cancer 5 years ago. She had a glioblastoma. Diagnosed 8/99, surgery 8/99 followed by radiation, and died 5/18/00. I feel for you and your mother, it must be quite tough for her. And for you. Mom went through some disorientation, and mood swings. She progressively got weaker rapidly near the end, lost the use of her left side and fell into a coma. She stayed in a coma at home for 10 days before letting go. My advice is to get hospice involved, and stay close by. Mom died the day my Dad went back to work. I had to call him at work , thankfully he didn't ask why I was summoning him home. She was surrounded by my sister and I, and my newborn son. We kept Mom home (via hospice) in a hospital bed that we set up in the living room. There was a steady stream of visitors who would sit with her. We played tons of family movies and talked alot about her and kept her involved although she was unconscious. Hang in there. this is very hard adn you are being such a wonderful support for your mother. Make sur ethere is somebody to hold you, as well. please pm me if I can help in anyway.....

 

[SueM in MN]

I read this yesterday, but had to get into the right state of mind to reply.
My dad died of non-Hodgekin's Lymphoma (a type of cancer). He had been thru 2 courses of treatment and when he had a relapsee, he elected not to go thru any further treatment. He went in and out of consciousness, more out the closer he got to death.

I understand perfectly what you mean about wanting your father's sufferring to end.
One of the hardest, but one of the best things I did was to tell my dad that he didn't have to "hang on" for us and that if he was ready to go, he just should. He was home with my mom caring for him with support from Hospice care. I went to stay for a week and late one night, my mom and I were talking in his room. I don't remember exactly what she said to me, but it had to do with her feeling he was trying to hold on. What came out of my mouth was "Dad, you don't have to stay here for us. If you are ready to go, we don't want you to hold on for us. We know you are suffering and want you to know that we don't want you to keep suffering for us to have you longer."
And, then I thought "Why did I say that! What have I done now." But, it was the right thing to say. It was like opening up a floodgate for my mom. We were able to assure my dad (who we didn't even know if he could hear us) that my mom would be taken care of. My mom kept bringing up things my dad had been concerned about and we were able to cover all of them.
He died a few days later and we knew he had heard us because in one of his "awake" periods, he told my mom that he had and that it gave him peace.

We didn't have the behavior that you are having to deal with, but I've seen patients who did and had a friend whose dad had brain cancer. The thing that she said helped her deal with it was to tell herself that the language and behavior was not her dad, but was the cancer talking. That helped her to disconnect the dad she remembered from the things she was seeing.

 

[kerrynic78]

I just wanted to say I am so sorry to hear this about your dad and to give a hug to everyone on here who has lost someone to cancer.

I lost my mom when I was 16 to brain cancer, she was 48 and it all happened so fast. One day she started having very bad headaches to the point where she would throw up. She would then forget how to get to her job that she had been at for 3 years and would back out of the garage with the driver side door opened. She went into the hospital a week later and never came back, it was so devastating to have to watch.

Prayers for you and your family.

 

[rbork]

riu girl - Sorry to hear of your dad. Get hospice involved. They will counsel your family and let you know what to expect from your dad with both the physical and mental aspects. I lost both my parents. My father suddenly and my mother over the course of 14 months, 5 years later. I finally called hospice to make an appointment for a Monday and my mom died 2 days before the meeting. I think it would have helped very much to have met with them. I now know the services that they offer by working in the medical field. I think it's wonderful to support your mother. I had no help. I still get weepy remembering the terrible times in the last months. (My mom had ALS)
The most emotional and peaceful part was sitting with her during her last hour. A night nurse let me know when "IT" was happening and I just held her hand and stopped the O2. I spoke to her and it was closure for both her and me.
People do "change" going through terminal disease's. THey are not the same person and that is one of the most difficult things to experience IMO.
God Bless and Good Luck.

 

[LoveWDW]

I am very sorry. You all have my prayers and hugs.

 

[riu girl]

You have no idea how much I appreciate the compassion of the people on this board. I know you all had to dig into your memories of loved ones for the support/advice that was offered on this subject. I hope that this was not too painful for anyone. That is the last thing I want for any of you. The information provided to me on this subject was invaluable. I don't know what I would do without you all.

Thank you all again for everything.
Have a wonderful weekend.
Suzy V.

 

[SueM in MN]

I hope that this was not too painful for anyone. That is the last thing I want for any of you. The information provided to me on this subject was invaluable. I don't know what I would do without you all.

Thank you all again for everything.
Have a wonderful weekend.
Suzy V.

One of the most positive things to do with painful situations is use them to help someone else get thru their pain.

 

[MomOf2DisneyKids]

My thoughts and prayers are with you...

 

[Nik's Mom]

Hugs go out to you! My father died of lung cancer only 3 months ago. We suspect that it spread to his bones, and he was gone in a matter of days after that. It was so hard to watch him suffer. In his last week, he really didn't make sense a lot of time, and began hallucinating. Then he'd have a moment of clarity and tell us he loved us. He died at home with my Mom and his favorite sister and her husband at his side. That is what he wanted, but it was torture for them to care for him. It was a lot of work, and hard to watch him suffer. And it was hard for me to be there because I didn't want my little ones to be there when Grandpa died. My autistic ds would get very upset when he saw his Grandpa. He knew he was dieing.
I really feel your pain. I will pray for your family tonight!

 

[arubalisa]

I read this yesterday, but had to get into the right state of mind to reply.
My dad died of non-Hodgekin's Lymphoma (a type of cancer). He had been thru 2 courses of treatment and when he had a relapsee, he elected not to go thru any further treatment. He went in and out of consciousness, more out the closer he got to death.

I understand perfectly what you mean about wanting your father's sufferring to end.
One of the hardest, but one of the best things I did was to tell my dad that he didn't have to "hang on" for us and that if he was ready to go, he just should. He was home with my mom caring for him with support from Hospice care. I went to stay for a week and late one night, my mom and I were talking in his room. I don't remember exactly what she said to me, but it had to do with her feeling he was trying to hold on. What came out of my mouth was "Dad, you don't have to stay here for us. If you are ready to go, we don't want you to hold on for us. We know you are suffering and want you to know that we don't want you to keep suffering for us to have you longer."
And, then I thought "Why did I say that! What have I done now." But, it was the right thing to say. It was like opening up a floodgate for my mom. We were able to assure my dad (who we didn't even know if he could hear us) that my mom would be taken care of. My mom kept bringing up things my dad had been concerned about and we were able to cover all of them.
He died a few days later and we knew he had heard us because in one of his "awake" periods, he told my mom that he had and that it gave him peace.

We didn't have the behavior that you are having to deal with, but I've seen patients who did and had a friend whose dad had brain cancer. The thing that she said helped her deal with it was to tell herself that the language and behavior was not her dad, but was the cancer talking. That helped her to disconnect the dad she remembered from the things she was seeing.

Our family had a nearly identical experience with my grandfather. He was mostly unconscious at the end and late one day my Mom told him, "you don't have to stay here for us". He then passed very quietly the following evening with all of the family present.

Even though he died 5 months after diagnosis of his brain tumor, I was totally devastated. We were extremely close and he would have done anything for me . Now almost 20 years later, the hurt and longing are gone and all I have left are warm loving memories of my Pop-pop. My only regret is that my grandfather never knew the joys of being with my dd as my grandmother (his wife) who is now 92 has so greatly appreciated. Sometimes I think this is what keeps HER going...