Sometimes you just need to cry. I find myself doing that more and more lately. My dad has had a gliomatosis cerebri for 7 years. I feel like he's tired of the fight...he's in a nursing home because he broke his hip about 3 years ago and never gained his strength back. One thing led to the next and he requires skilled care now. Its the hardest thing I have ever gone through and it's hard for me to even be posting this right now without wanting to cry. He recently had a seizure and since then he has not been himself and we are trying to find out why. You would think I would know how to cope with this by now but I see my dad declining and it's an emotional roller coaster for me. I know I am not alone, but I definitely feel that I am.

I am not sure you really learn how to cope. I have been a caregiver to my wife for over ten years. I find it just as hard today as it was ten years ago. You do it because you love the person. Last November my wife was diagnosed with her 3rd tumor, most of it was removed. this one is a GBM-4. Yesterday we learned that the treatments are not working. Now we move to the last phase. And I ask also, how do we cope with this. We do it for love, we do it because they need us. We do it, because for us, there is no other choice.

John is so right on. We do it because we love them and want to make sure they know we are there to see them through all that is coming. To help the survive and beat it!

I have been writing on this web board since 2004 when my wife Becky had grand maul seizure and surgery for "plum-sized" AA3 in right frontal lobe. After 1st year of radiation and Temedar local hospital thoght there was recurance and had no plan B to offer. So we went to MD Anderson in Houston... there, they MAKE plan B's! They write the books! After more sugeries and clinical trial chemo they saved her life. 6 years later she is on 6 month MRI shedule at M.D.A.

Now to add to why John's answer is the good one... Becky was Dx'd with BREAST CANCER in Oct. '09. She is in midst of chemo and will face surgery and radiation for that and we expect to beat the demon cancer again!

A care giver has to overcome those "pity parties" and pull our loved ones through their difficult battles! It's my job because cancer is a WE thing... not a me or their thing!

That said... are there any other old members of this board out there who can't seem to get back in touch with those old friends and members? I really don't like how this thing works!
Gene

This is all so true, and I am glad someone else finally responded. I was feeling so down when I wrote last time. My father is my life and I am slowly seeing him decline and it's killing me. Although he is in a nursing home there have been many occasions where he has been hospitalized and I have had to do things for him that I never thought I would ever have to do. I realize now that I could never do these things if it weren't for the person my father taught me to be. He has always been so passionate about his family, loving life and doing things for others. He has made me who I am, created the person I have become and will grow to be forever. Being a caregiver for my father was never an option, I was going to do whatever I could to make his life easier. Sometimes I feel resentful because my parents divorced when I was young, my father's current wife is out of the picture and has abandoned him and my only sibling lives 500 miles away. Although I have support from my fiance, friends and family it's difficult to not feel so alone in this journey. I have learned to cope with the situation and feel as though I have already lost my father to this disease because he is such a different person.

Dear Christina, I’m so sorry for what you are going through with your father. I’m the BT patient in my family, but I’m also the caregiver for my father who has several health issues which limit his ability to get around and do things for himself. Though he’s incapacitated in many ways, in others he’s doing well so I can only imagine how difficult it must be for you. However I can identify with much of what you’ve said. I find myself doing more and more things for my father that I never thought I’d be able to cope with. With each task I’ve had to take on I think that I can’t handle anymore and sometimes I break down. But then I think about all he’s done for me and never complained; I think about how he’s had to support me through all that I’m going through with my BT. Like you said, not being his caregiver was never an option. But I also often feel so alone and isolated, and like you, sometimes resentful. My parents are divorced too, and I had never had any negative feelings about it until now; I sometimes feel like my mother should be the one to have to deal with my father. But she’s done so much for me during my fight with my BT. She does come over and take care of us both during my chemo, and I appreciate the break; but after spending time with the two of them together, I realize it’s all for the best. She takes care of me, I take care of Dad.

Please take care of yourself and remember you are not alone. I wish you and your father all the best.

my husband isstill able to care for himself, he is actually taking care of his mother who has moved in with us after a fall around new year, he waits on her , she is suppose to be able to call me at work if he has a seizure, but she does not even know when he is having a seizures, his are more like mini strokes, his speach is affected most, i work as a hospice nurse, i love my job but at times i feel hopeless when i know the facts and stats about glioblastoma grade4,he feels fine so he does not think anything is wrong, he still drives , but i refuse to let him drive his 18 wheel truck, so he has drivers working for him, we go this friday to have 2nd mri after radiation and temodar, i keep reading surviors stories,this gives me hope. i still cry.

I'm new to all this, and I find it hard to watch a wife of 41 trs. just seem to go down, and down. On 11/20/09 she found out she had a tumoe. On 12/01/09 she had the surgery to remove it. It was a glioblastoma multifoem grade 4. They left 15% of it in. Said that they couldn't get to it. She has done 30 radiation, and 42 temodar 140 mg. treatments.After a month, now she's doing 300mg of temodar for 5 day's, and off for 23. this will last for 6 months. Have ya'll found this to be the normal treatment?? I guess during the surgery, they stopes removing the tumor as it was near her left side motor cntrol part of her brain, and they didn't want to have her parrilized. ( sorry,,, can't spell ) But the thing is,, I have to watch a once vibrent woman sit and shake, and can't walk very well. Copeing is rough, but like all the other postings, It's got to be LOVE that keeps the caregiver going. I've done thing's I never thought I could have. Bear with me please, but like I said,, WE are I guess just starting our jounery,,,, and I don't know the way. Pray for us, as I'll pray for all of you.

Rexregus, I empathize with all you are going through. My husband was very active, a gifted athlete. He was a superb runner, hiker, and bicyclist. We both were, and this is something we did together. We would spend hours poring over a map of the Desolation Wilderness (near Lake Tahoe) to figure out where our next hike would be. We'd try new campgrounds every spring and summer. We biked highway 89. We enjoyed being physically fit. Since his diagnosis in November 2008, things have changed. He was strong, spry, energetic, and happy with his life. He's not that strong and energetic now, but he's still fighting! Seek the opportunities this presents for you. We've grown leaps and bounds spiritually. We've developed closer relationships with family and friends. We have met many doctors and nurses and other health care professionals who are absolute angels. We have been enormously blessed amidst this chaos. And the fact is, it is chaotic. Try to relax and enjoy time spent together. No one ever promised and easy road. Maintain your sense of humor. When you don't know what to do, pray. When you don't know what to say, pray. It doesn't have to be long and perfect, just speak what's in your heart.

Rexregus, My father had a similar treatment plan when he was diagnosed 7 years ago, but my father has a Gliomatosis Cerebri which can not be operated on. It's so hard to watch him decline because he was in such amazing health before they found his tumor. He was an avid bicyclist and runner in great shape and felt fine until he started having what we found out were seizures. I blame his current health problems on the side effects of all the chemo and radiation. His MRIs have shown slight shrinking of the brain which is normal from all the radiation but the effects are horrible and the progression of these side effects are the hardest thing to watch. Sometimes I think I can't handle watching him like this, and then I think of the amazing father he was, the fun trips he took my sister and I on and all of the life lessons he has taught me. He lived a great life, took wonderful care of me and now it's my turn to take care of him, it's the least I can do. I wish there was more I could do like take his pain and discomfort away, but I can't and it's now that I realize the love I have for him. I pray for caregivers and patients, to give them the strength to overcome their obstacles.

It's so therapeutic for me to hear each of your stories, it's like reading my own family's story, you all know what I'm going through and that feels so good. My dad had triple bypass surgery in December of 2004 but kept on being as active as ever with a full time and part time job. He decided to retire in March of 2008 and only kept his part time job but remained very active. He would offer to mow the lawns of the elderly from our church and would do odd jobs in their homes as needed. The bad thing is that we couldn't afford to pay for COBRA coverage so he lost his insurance. Then in March 2009, our nightmare began when we found out that he had GBM4. Even though the hospital forgave all of my dad's surgery debt, we're still in significant medical debt. My mom takes care of him because my brothers and I live out of town but she has chronic asthma. My dad's ability to reason has declined over time so he gets upset with us when we make suggestions about ways to keep him safe. Sometimes, I just want to scream. It helps though to think about the things that my mom and dad sacrificed for my brothers and I. I think of what my dad would do if things were the other way around and I was the one with cancer. I know that he would stick with me and love me every step of the way. Unconditional love and hope even in the face of despair are what can get us through each day. Thank you for allowing me to vent.

I am touched by all of your comments, I wish I felt that love for my husband. My frustration is with the behavior changes in him. I feel like the man I married is gone. He was not only an active person but he was inteligent and positive. Now I am living with someone who is angry, complains about everything and does dumb stuff all the time. I don't even want to come home after work because I don't know what i will find. And when he was on steroids, I would wake up at 5 am to him screaming and cussing at the computer because he could not remeber his password. My life has been hell and i can't find the love and compassion that I should have.

Dear pbutter ...... I wonder if I can say what I'm feeling or if I should just be quiet.
I am so sorry your life has taken such a dramatic, painful change.
There is hope that your husband's anger and 'confusion' will level out - I hope and pray so.
Is there anywhere/anyone you can ask for help? A guidance counselor might be at the hospital and really help sort things out. Maye just a simple church could help?
Again - I'm sorry you are in such pain. These miserable brain tumors suck big time.
I wish I could offer some wise words
Feel free to talk here all you want - anything you want.

Hi pubutter, I am so sorry. Have you spoken to your husband's doctor about his symptoms? That might be a good place to start. The changes your husband is experiencing are some that my husband has also experienced from time to time. I have found that not taking his behaviors personally work well.

You might consider keeping a simple journal or post it notes with reminders in strategic places for things like passwords. A calendar at the breakfast table with the date and that day's schedule has worked well for us. Keep things simple and without excessive stimulation, noisy TV, loud music, too many visitors staying for too long, etc. Don't overdo any activity. Ask for meal, transportation, shopping, housecleaning or caregiving help. Pour out your feelings to a trusted friend or relative.

I only speak from my experience. Feelings of anger and loss are perfectly normal. Mine have subsided with time. I will pray for you and your husband. Please let us know how things go.

The original question was how do you cope with the day to day ups and downs. I have to say that my answer would be, "Not very well." My husband had his first seizure on Feb 1, 2010, got the diagnosis and had GBM tumor resection on March 25, 2010. He's now doing the 6 weeks of radiation + temodar. I took off 5 weeks of FMLA leave and am back to work (working from home) about 35 hours a week. I'm overwhelmed trying to work and care for him. The motor skills and mental clarity have really gone downhill in the last week, as the side effects of the treatments are starting to really kick in.

I feel like I'm losing it most days. It seems like any little thing will set me off on either being verbally & visibly frustrated or cause me to start crying, especially if it's "one more thing" that needs doing. Could be anything: work stress, another email coming in that needs to be answered, dog puke that needs to be cleaned up, a massive water spill because my husband dropped yet another full cup of water, anything. We have no family in the area who can help on a daily basis, and even though our friends and neighbors are great (meals, yardwork, etc.), it's that day to day stuff that is just overwhelming to me.

I really don't know how people manage who have to go to an office or job site to work. What do you do? Do you have in-home care, or family, or what? I don't feel like I can take him to a day program at this point because he's so unstable on his feet & can't *think* clearly.

I'm new to this and have been looking for something like this for awhile. I hope this will be of help and perhaps maybe someday, I can be of help to others going through this. I am a mother of a 27-year old son who has been fighting a pilocytic astrocytoma since he was 13 years old. After initial surgery and treatment he went over 10 years with no new growth and had some amazing experiences and was able to live life to the fullest (except not able to drive because of damage to his optical nerve which took all of his left peripheral vision). Then about 3 years ago new growth was found and he went through a year of chemo which didn't work. The next step was radiation therapy. We were leary of it but were reassured to hear that there was only a 5% chance of problems occurring from the radiation. You never think you will be one of the 5% but my son was. About 8 months ago his vision started changing and within a 2-month period he went completely blind. His hypothalamus and pituitary gland were damaged and he is deficient in all hormones produced and has to be on replacement hormones, he is experiencing left-side neglect and probably the worst symptom is for over 6 months now he has been suffering from delirium which has kept him from being able to adjust to his blindness and he needs 24-hour care. We are anxious to hear if anyone else has experienced a similar experience or if there is information about rehabilitation for this type of brain damage that would help him regain some independence back and a better quality of life. My husband and I were recently empty nesters and now feel like we have a new-born again. We are up several times a night with him and he needs constant care and assistance with everything he does. My heart breaks every single day as I try to adjust to all that he has lost and the life he was supposed to have. I LOVE HIM so much!!! I would do anything for him, but it is all I can do to watch this happen to him and be helpless to know how to make it better. I have found that the thing that helps me cope the most right now is trying to find something every day to be grateful for and it helps make me aware that we are receiving blessings in our lives every day and it keeps my perspective more balanced. I just keep hoping it will quit hurting so much and just when I think I'm over it, I find that I am far from it. How long does it take to be able to cope?

I just read your post and my heart went out to you because I am going through something very similar with my son who is 27. I posted a comment on him tonight and then happened to read your post and had to respond. I can so relate to what you are saying. He is confused and blind and needs help with everything. We are up 4-5 times a night most of the time and are usually sleep deprived. My husband and I are trying to care for my son together so I atleast I have his support but we feel like a tag team and have little time to spend together anymore. We both work during the day and so we were able to get our son approved through Medicaid and they provide assistance for an in-home care giver while we are at work. It isn't enough to cover all the time we are at work, but it helps. It's hard to leave him with someone else, but it can't be helped. I don't know if that's a possibility for you but it's worth a try. You can't do it alone. It's too much! If it were just the overwhelming responsibility, it is one thing, but it's your emotions trying to cope with this huge change in your life and grieving over the loss of his health and the life you had together. Those two things together make it seem daunting. I'm still trying to figure it out myself and don't have all the answers for sure, but try to find assistance wherever you can because it is out there for these types of situations.

I am so sorry to hear your stories. I am sure that your sons truly appreciate everything you are doing for them. My dad has GBM and my mom is his main caretaker - she is resistent to having anyone else come in to the house, but I am being persistent and actually have a Physical therapist coming in for an initial assessment tomorrow. I'm also hoping for some HHA to help at bedtime or mornings. I feel guilty but cannot be there with them 24/7 as I do work full time and have a family at home. The same goes for my sisters. The hard part is my mom never drove so she feels trapped at home since dad no longer can drive at this point. I keep emphasizing to her to live one day at a time. It's hard though. God bless. Char

My husband just had Gamma knife for what they believe to be GBM. In our case, the tumor affects his word finding/forming area of the brain, which I find to be cruel, because we have daily frustrations because of his inability to communicate. It often brings him to sobbing tears that he is unable to tell me what he wants to say. Much of my day is taken up with working through his limited speech abilities. I get so sick of hearing him repeat whatever word he's stuck on again and again and again, and then I hate myself for thinking that, and am grateful that I can still hear his voice.

With my husband, daily we never know what his mood will be. Along with dealing with GBM-4, his PTSD from Nam is getting worse.

It's been very hard on him, not getting to drive and he's had a few melt downs lately. On top of that, it snowed a week ago and now he can't go golfing. He loves to golf and wants to be able to golf as long as he can.

He had his 2nd Gammaknife on Nov. 3, on Dec. 2 he will have MRI to see if it worked.
I deal with him daily on my own, 2 of our daughters help out when needed, the older daughter lives across the US from us. She would like to move back and be here too!

Grandma of 7,

I'm sorry to hear of your situation, and maybe can help.

Are you aware that the V A has improved their services to veterans suffering from PTSD?

If he is not currently enrolled in their healthcare system, getting him enrolled is the
first step, probably. There are people who can help you fill out paperwork and apply
for missing discharge papers, if needed.

Try www.va.gov for basic info, if needed.

Good luck to you, and I hope this might help.

Just try to have patience with your husband and enjoy the time you have left with him. You never know what tomorrow may bring.

I am so sorry for what you are going through. My mother was just dianosed and it's been a nightmare - type 4, whatever that means. My brother lives in California and I am it. To top it all my father also has cancer and is recovering at home. What choice do we have, we don't. Spend as much time with your loved one and ask lots of questions if they are up to it. I am now finding myself writing a story about both my parents and their lives. It seems to help.

Hugs to each and every one of you. It will be 20 years since Ron's diagnosis of a AA II-III. As you can see he looks pretty good, yet he has struggles. 7 surgeries, radiation in 92, aphasia, paralysis and seizures.
I have been his nurse, advocate, friend, companion, driver, caretaker, cook, etc. It is really hard at times especially with him not able to tell me what he needs. He too was very active before and now we have had to change our lives.
My medical needs always take a back seat. If I can tell you anything from my experience you MUST take care of yourself.
Just posted a book review, our memoir. Hope through the Eyes of Love. This is our story and my goal is to raise awareness and hope to others.

Hi,
This website is new to me, so I hope I'm doing his right. My husband has the same situation with GBM and PTSD.I can't always think of what he is trying to say, so he gets upset with me. I really don't know what to do because sometimes I can't reason with him. I have discussed the mental health with many of his doctors, and they put him on a mild never pill. His vision was affected by the tumor, but he tries to drive when he gets angry sometimes. I try not to take his actions personal, but his behavior is so strange at times. I love him, we have been married 40 years and we have three children. Our eldest son is home for a fews weeks to help me, but my husband thinks we are trying to take over his home/life. I thank God for each day with my husband, but sometimes it is very hard.
Dianna