CancerCompass message board discussion started by Bunkydarl on 7/4/2008 http://www.cancercompass.com/message-board/message/all,25735,0.htm Sun, 23 Nov 2008 00:00:00 GMT Sun, 23 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My dad have GBM IV since April of 2007.  He is doing "well".  Lives on his own still.  I as most of you have read before am a 35 yr old, only child, lost my mom 3 years ago.  Husband.... 3 kids.My dad has always been my "everything".  Words would come out of his mouth and I was melt.  No one could hold a candle to him.  Whatever he would ask, I would do it before the words even came out of his mouth.  We are exactly alike and I love him more than anyone else in the world.But lately my nerves have been SHOT!!!!  He is driving me up a wall.  He keeps only wanting to talk about the same things, OVER AND OVER....everyday!!!!  I can complete every sentance.  and he acts as if he never said any of this stuff just moments ago.  I am really having a hard time with it.  He does not understand how to work any kind of electronic device.  TV, Phone, Computer, ect, and then keeps asking me how they work.....EVERYDAY!I just want to know that others are going through this?  This is not my dad anymore.  I don't know this "person" that is living in his body.  I want my "daddy" back.Sorry, but it feels so much better to just RANT! Bunkydarl Fri, 04 Jul 2008 00:00:00 GMT I am so sorry for what you are going through. I lost my mother a year ago to lung cancer with mets to adrenal glands and brain. I remember early on in moms short 6mo battle that she was having issues. She always said it was chemo brain. Which the doc did confirm happens to some people. Anyway it did get very frustrating at times. The cancer in the brain was found 2weeks before she passed. I would get frustrated sometimes when she would repeat herself and always ask the same questions. I think I was more frustrated at the situation not her. I hated that there wasn't anything I could do to make it better. I too wanted my mom back. There was one day when she was trying to eat soup and she kept spilling it on her shirt. She couldn't get the hand to mouth movement down. Anyway later that day she asked if she had eaten all day. It's very hard and it creates a downward cycle. You get frustrated and then you feel guilty and then you are upset bc you are feeling guilty. We just tried to take it slowly and took alot of deep breaths. Mom was on home hospice and no one in our family has any official training on how to handle people in this situation. Well my brother does a little, he works with mentally handicapped people not exactly the same situation. But now that it is over and she is gone I would give anything for another conversation with her.  Anyway.. know that you are not alone. I don't know a caregiver who hasn't been in your shoes. Just remember to take some time for yourself. I know its hard. Good luck and take care. Dothedewmom Fri, 04 Jul 2008 00:00:00 GMT I will tell you the same thing I told my mother when she got upset at mu father who had GBM-" Just put up with him, listen to him even if its nonsense because in the near future you wish for your father to repeat all those things but it will be too late. GBM is no joke-people affected by it will never be the same people we once knew-sorry to say , but you will never have your father back-I lost mine after the surgery-he was never the same-yes everything went well including the radiation and chemo, but they will never be the same. Like most people here, I lost my father to GBM I have been there and experienced everuthing you do so believe me that it's best to just put on a happy face and listen to your dear father until you still can.  best of luck to you.Joe Chiroman95 Fri, 04 Jul 2008 00:00:00 GMT My husband has the same issues with the electronic devices. He can't figure out the TV controls and knows it so it is not only tough on me but even more difficult for him. If he goes to answer the phone many times he'll have the receiver upside down and it takes a while for him to realize why he can't hear what is being said. He said he feels stupid, especially when his short term memory fails him. He can start to have a conversation and before he gets many words out he forgets what he is saying, even if I prompt him he just can't remember.  Maybe if he had a companion come in occasionally to talk with then you will have some relief from the constant repetition. The VNA is involved with my husband and the nurse that came in to see him has requested a volunteer come in to spend some time with him. My husband has always been a very social person so I believe that this is important for him also. I work so he is alone at home much of the day, so I feel guilty if I have other things to do outside the house. I enjoy the time that the companion is here because it gives me a break, I can do things I need to get done outside the house and he gets to see people other than family. CSM51 Fri, 04 Jul 2008 00:00:00 GMT My brother is the same way. TV, cell phone, computer, clock - forget it! I am not a very patient person, but I've learned to control my urge to do things for him. Is your dad on an anti-depressant? That really helped my bro. Also Speech therapy - we were instructed to not complete his sentences, so I let him struggle until he ASKS me for help. In fact it irritates the hell out of him when people try to finsih his thoughts. Don't be so hard on yourself. You have a very full plate. I suspect that what you are feeling in NOT ANGER at all - it's sheer terror.We have a woman who comes in once a week to handle alot of stuff for him. He also gets out with his friends - a lot. ( At least the ones who are still around) My Bro is Mr, personsality and he was not easy to deal with when he was first diagnosed either. But we are going on 18 months now and the past 9 months or so - have been much easier as he has learned to accept his limitations. I also have no problem telling him when he is OUT of LINE. He swears I LOVE doing that.:) He's right.:)Hang in there sweetie - find some one to give you a break once in a while.and take care of your self. Wissis Sat, 05 Jul 2008 00:00:00 GMT My wife would ask me the same questions over and over again all day and night. She would say she needed to go to the bathroom every 5 minutes and I would take her 60 times in one night until 5 or 6 am. She would want to move from one place to another and was always restless saying she wanted to move to another place to sleep. She would walk in and out of the house, drop things, fall down, and demanded constant supervision. Sometimes I would follow her everywhere to make sure she wouldn't endanger herself. Her retention span was probably 1 minute at times and would completely forget that she asked me the same question. I felt sometimes my tolerance threshold was driving me crazy and it took every ounce of patience to deal with it. My wife apologized to me and said I am sorry I can't help it and it hurt me so deeply to see it in her. I know she was frustrated as well and trying so hard to live a normal life.But as I see the condition she is in now and struggling to survive. I would give anything to see her the way she was again. I would gladly deal with those challenges over and over just to know that she is better than she is now. The way I coped with it is I would imagine what it would be like to be her. You got to remember that people with this condition can't think normally and it is hard to fathom that they can't function mentally the same as the rest of the world. We found that Lexapro helped with the OCD behaviour. You may want to try it as the doctors recommended it. I would cherish the time that you have with your loved one even though it is frustrating. You may regret it and feel bad when things have gotten severely worse. Trust me, I think about times that I was frustrated or annoyed but sometimes you just think of other ways to handle it. Sometimes I would make jokes like when she would ask me where are we going 20 times in a row driving to the hospital. I would answer it differently each time. Puerto Rico, Hawaii, New York, and actually make it an amusing game. It actually helped stop her from asking the question and got her to laugh.It takes a strong person to deal with this condition and I am sure you would find it in yourself. evancheryl Sun, 06 Jul 2008 00:00:00 GMT You are not alone...my stepfather has GBMIV he was diagnosed 7 months ago had surgery and has done pretty well. recently he has become very verbally abusive to my mother and yells at her most of the time. My stepfather has always been kind of mean( also a mean drunk years ago) My mother says she feels like she is living in the old days when he drank alot....yesterday she left me a message saying that he sent an e-mail to my cousin that was horrible....my stepfather thinks my cousin is a loser because he lives far away and never visits his family. Let me say my cousin works for American Idol summer tour..he is the musical director and is busy all the time. Also my cousin was physically abused as a child and mentally from his father and looked up to my dad. I feel horrible today that my dad did this to my cousin. My mom says she wants him out of the house that he is insane. SOOOO you are not alone. Medications and the cancer do bad things to them. My stepdad is on steroids and I am sure that is not helping but if he didn't take them his brain would swell and that brings on even worse things......hang in there at least your dad wants to talk to you Stacy1 Sun, 06 Jul 2008 00:00:00 GMT I know what you mean about your dad not being your dad. I too am an only child and Daddy's Little Girl. My dad was diagnosed with brain tumors 8 years ago. When I explain my dad and our relationship, I usually refer to the dad prior to Aug 6, 2000 and after. Prior, my dad was the happiest, funniest guy. He spoke around the country for a major financial company and was very easy-going. He was always the life of every party. But after his diagnosis, he hated being around people and was usually pretty moody. Although he was dramatically different, he was still my dad and he still loved me more than anyone (and I loved him more than anyone.) Now that he's in a hospice and unable to speak or comprehend much, I feel guilty with all of my frustration I had with him in the recent years. I know you're just venting, but cherish the time you have with the person who he is now. ireland314 Sun, 06 Jul 2008 00:00:00 GMT I'm in the same boat Ms. Bunky!  If you live close to N. IL maybe we should get together - the kids can have a playdate & we can have a drink (lol)!  We can let our husbands mingle as well!!!  My mom lives with us - its challenging at times....try to keep humor.  Some may get offended when they hear my mom & I go back & forth but we do use alot of dark humor & laugh about things.  If she can't remember how something goes, she pleads "brain damage" or if a cashier gives her a hard time about receipts with returns we joke about just taking off her hat & tell them she's handicapped & to give her break!  If we don't laugh, we'll cry. Right?  Hang in there!! Nikki :)Mom plum-size GBM 10/07 Lt. parietal lobe; 6wks rad/Temodar; Temodar 2/08, 4/08, 6/08; Gamma Knife 5/08; MRI 7/9/08(having increased headaches/dizziness despite steroid increases) Smilie Mon, 07 Jul 2008 00:00:00 GMT You are entitled to vent - and don't feel guilty.  My Mom has GBM - her second round - she was rediagnosed in Dec 2007.  In the short time since then she's gone very quickly to living independently and being very active in her community to a nursing home where she cannot feed herself, sleeps and hardly talks.  Chiroman and others who say that there will be a time when you yearn for these conversations are correct.  I would give anything to talk to my Mom again.  She really cannot carry on any kind of conversation.  I sit and talk to her, read to her or just with with her.  My Mom and I were always close - although I didn't do as much for her when she was healthy as I should have, I thought she'd always be there for me.  Now that she doesn't converse at all, I miss her talking so much.  When she was at your Dad's stage, I missed meaningful conversations, now I miss any two way communication with her.  She used to ask the same question over and over and I would just keep answering - now I wish she would ask anything. Please don't be too hard on yourself - you are doing a hard job.  Take a deep breath, remember your Dad as he was and how much he's done for you and keep on doing what you can for him.  Think about him as you might a child that keeps asking the same questions or talking about the same thing.  He will take comfort in the sound of your voice and in your presence.  Make sure you get a break and take care of yourself also.  It's good for you and for him.  Someone once compared taking this time to the airline instructions to "place the oxygen mask over your own mouth before assisting a child to put on the mask".  This goes against our nature, but we aren't much use to anyone if we pass out from lack of oxygen.  Take care and God bless. lkatl Tue, 08 Jul 2008 00:00:00 GMT Hi Bunky--It's Jill. How are things today? I read your message and just can feel your pain thru the screen of my computer. It relives so many memories of the same feelings you are dealing with right now. I remember feeling very guilty having the thought that I just wished my Dad would pass away because it was inevitable that he was going to get better and he was so unhappy with everything. I would feel so guilty thinking that thought.  However going thru loosing your Mom to cancer and soon your father being sick...makes us think on a different level. You are so normal for what your saying and I hope you are able to get some time for you. Is there any other family that helps with your dad? I know you said your the only child...but is there aunts, uncles, cousins that can just give you a break and go sit with your Dad? There were some days where I just couldn't go visit my Dad cuz I just couldn't sit there and listen to him say over and over again how he hates the meds and how they make him feel and that the doctors don't know what they are talking about and that he's going to take himself off some of the drugs. It was so hard to hear and so hard to respond back w/what I really wanted to say. I bit my tongue so many times. Alot of the replies you are receiving is telling you to cherish those moments cuz you'll look back on them and wish them back. But I certainly don't wish to have those thoughts that my Dad had back. He was struggling and hurting and his whole entire life was flashing in front of him and there really was nothing we or the doctors could do to take it away completely. It's hard. No doubt about it. But now that my dad has passed, I really do feel a sense of peace when I relive those moments of shear terror. I miss my dad and wish alot of things in life were different, but I don't wish for those dark days. I wish more for the good...so just keep remembering all those great memories you have with him as a child and before this beast entered his head. You are such a strong person and I'm wishing you complete peace and hope your day is better today.Hang in there, I'm here to talk if you ever need to vent.Jill Jilby Tue, 08 Jul 2008 00:00:00 GMT  On 7/4/2008 Bunkydarl wrote:My dad have GBM IV since April of 2007.  He is doing "well".  Lives on his own still.  I as most of you have read before am a 35 yr old, only child, lost my mom 3 years ago.  Husband.... 3 kids.My dad has always been my "everything".  Words would come out of his mouth and I was melt.  No one could hold a candle to him.  Whatever he would ask, I would do it before the words even came out of his mouth.  We are exactly alike and I love him more than anyone else in the world.But lately my nerves have been SHOT!!!!  He is driving me up a wall.  He keeps only wanting to talk about the same things, OVER AND OVER....everyday!!!!  I can complete every sentance.  and he acts as if he never said any of this stuff just moments ago.  I am really having a hard time with it.  He does not understand how to work any kind of electronic device.  TV, Phone, Computer, ect, and then keeps asking me how they work.....EVERYDAY!I just want to know that others are going through this?  This is not my dad anymore.  I don't know this "person" that is living in his body.  I want my "daddy" back.Sorry, but it feels so much better to just RANT!It helps to vent and this is a great site to do it - as long as it doesn't carry over in your attitude or speech towards your dad or your treatment of him.  This is the same man that was "everything to you" - the same one that "you love more than anyone else in the world"!  He was there for you for 30+ years - answering question after question when you were growing up - financially, physically, psychologically supporting you all those years.  No one earns the beautiful words you used describing your relationship with your dad by thinking of himself first.  Sometimes as only children WE become a little "me, me, me orientated - aka spoiled (I speak from the heart as a 61 yr old mother of 5 who was also an only child who was spoiled rotten by my mom).  Your father has earned the right to respect from you now (not because he is your dad but because he was a great dad).  Sadly, the time has come that he can no longer be there for you in the same capacity that he has always been - it is now time for you to be there for him (even if it means answering the same question over and over or showing him how to work an electronic on a daily basis).  I'm sure it is frustrating for him having to ask contiually how to work the TV, phone, computer, etc?  Even though he may not realize he is asking the same question over and over, he may pick up on the frustration in your voice.  You say he still lives on his own and therefore I may be assuming incorrectly that you are not with him 24/7; however, if he is staying with you, getting someone to come in to stay while you take time off is wonderful advice.  No one but God knows how much longer you will have your dad with you so live every day to the fullest.  When the day comes that God takes him home don't have any regrets over the way you handled his illness.  Suggestion - while it doesn't sound as if your dad needs any additional medication, have you thought about talking to your doctor about something for anti-anxiety for you (e.g. Ativan or similar med)?  It might help (and prayer helps more than any medicine).             Dlynn1210 Tue, 08 Jul 2008 00:00:00 GMT Thank you for all of the replys.  It felt good just letting off some steam after a difficult day to other people that deal with what I do everyday.  I love my father just as much today, if not more than any other day.  I would never let my father think for one second that I am bothered by any of his behavior.  My father has a home here on Long Island and one in Florida.  He wanted more than anything to live out his days in Florida and I let him go.  I flew down there every 2 weeks--7 hrs door to door-- I did this from August until he called in May to say that "he was ready to come home".  I was on the next flight down there.  I racked up 3 free round trip airfares for flying so much, just because I want my father to be happy.   I would do anything for this man.  For others that have followed my posts you know where my heart and head are. Having just lost my mom 3 yrs ago I am very aware of how precious this time is with my father.  My frustration I believe is completely normal and who better to vent it to than other people dealing with the same horrible disease.  I hope that I did not offend anyone.  My sincere apology if I did.Glioblastoma has turned our lives upside down, and I am so greatful to this website and the people that I have been connected with.  ~BunkyAs always, no proof reading, I'll end up erasing most of what I wrote! Bunkydarl Tue, 08 Jul 2008 00:00:00 GMT sweetheart you vent! my g-mother who has passed from cancer 5 yrs ago, was the sweetest most loving quiet selfless person that ever walked on gods earth, towards the end of her battle, she became selfish, crabby, verbally abusive, very hard to deal with, I could not stand to go to her house, I knew it would be a battle to leave, it is very hard, hang in there honey, you are feeling normal feelings. I am sorry for you, stay strong, your being a good daughter. you are teaching your children a very important lesson, and they will be better adults for having witnessed their mothers love to her father. laurali59 Tue, 08 Jul 2008 00:00:00 GMT alot of people expereince major personality changes because of the drugs associated with the tumor.have you looked at reducing some of the things he's on? Does he really need everything? Make a judgment call yourself and then talk to his doctor for perspective.You'll probably notice your "old' dad coming back.   bijou10 Wed, 09 Jul 2008 00:00:00 GMT