Glioblastoma (Brain Cancer) - BRUTALLY Honest Caregiver Experience
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- เผยแพร่เมื่อ 14 พ.ค. 2024
- My dad was diagnosed with a brain tumor (glioblastoma) in June 2022. Here’s my experience as his caregiver alongside my mom.
0:00 - Introduction
0:21 - Glioblastoma diagnosis
4:56 - Radiation and Temodar Treatment
7:08 - The first major seizure
9:04 - My first real experience as a caregiver
10:44 - Glioblastoma recurrence
12:35 - Awake craniotomy
14:50 - Rehab
15:55 - Caregiving at home
26:06 - Another setback, another seizure
28:20 - The decision to enroll in hospice care
30:32 - Guilt, doubts, and regrets
34:40 - An update
Please reach out in the comments if you’re in a similar situation and want to chat. I am by no means an expert, but I do have experience navigating the health care system, understanding treatment options, and dealing with the difficulties that come with a loved one having brain cancer. Thanks for watching, and I wish you all well! - วิทยาศาสตร์และเทคโนโลยี
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My 32 yo beautiful daughter passed away from GBM on 10/2/21, only 6 weeks after she was diagnosed with it. The whole thing was like something out of this world - from fine to gone in 6 weeks. The cancer was in her brainstem so surgery was out of question. We opted for no chemo or radiation given how quickly she was deteriorating and instead I kept her home with help of hospice. She died in my arms. I still can’t believe that has happened and can’t wrap my head or my feelings around it. Forever heartbroken mom
I can imagine how shocking that events must have been for all of you. And I am fully aware about what a tragedy it is, when a parent outlives the beloved child.
That beeing said.... Are you sure your daughter wants that ("Forever heartbroken mom")...?
I didnt know her, but with 32yo, I would imagine that she was a smart young lady, and that she wanted you to be a happy mom who enjoyed her time until you will be re-united some day. If I was your daughter I would be pissed to read such things from you. So if you dont want to make her mad, how about go some small tiny steps in the right direction? How about you invest some time and love, in a particular thing that she would have loved?
You did the humane alternatine..I believe this to be the right choice...You saved her much pain.
My 32 year old brother passed away last 4 months due to this life threatening High Great Glioblastma disease😭😭
I am a father. I cannot comprehend your loss. Stay strong.
My heart is with you
My husband died of glioblastoma 9 years ago. He died 7 months after symptoms began. We chose to not have chemo or radiation so he could have quality of life while dying. I kept him home in a hospital bed with the help of hospice and dear friends who donated their time to help me. He was never in pain, luckily.
So sorry you went through this, I would personally not seek treatment also and see out my days at home with family.
Horrendous - he was obviously a lovely person x
You made the right decision. My oldest daughter fought to live for 20 months, chemo, radiation, three craniotomies, two clinical trials. Horrible. The only justification for choosing such suffering was to give her 15 year old son time to grow up a little more before the loss of his mother.
Dying at home in my own bed is what I HOPE and PRAY for too . Pain Free,put me on my deck to see the forest and feel the breeze 😊 Hate Hospitals
Former nurse
Your husband was lucky to have had you❤
I have been free from Glioblastoma Multiform stage 4 for over two years. My doctors think that I am a walking miracle. After listening to your and others stories, I am sure that I have lived a miracle. Four months later I suffered a ruptured bowel. I had a colostomy. I continue to live alone and am doing extremely well.
I wish you and your family all the best.❤
Wishing you all the best this Christmas, long may your good health continue! 💗
@@Hana-F Thanks to you. I wish all the best for you now and forever.
I hope you continue to thrive. There's exceptions to almost every rule, and I'm glad you're one of them!
Free as in they were able to remove the entire tumor?
@@romanaabo3664well, right now he is in remission.
Anyone can only wish to have a son like you. God bless you ❤
I am sorry for your loss. My husband died of GBM in 2011 just 23 days after it showed up on a head CT. I was in the scanner control room when his scan came up and as a physician, I immediately knew he was going to die fast. I think I lost 10 years of my life in that moment. The 23 days was nothing but a string of disasters and bad news and a fast uncontrollable slide into hell.
The only thing I can say to you is, let go of all guilt, all the "what if's, all the anger at doctors missing the real diagnosis(that happened to us too), and just miss him. There is nothing you could have done different and grief is enough pain.
Thank you. I really needed to hear this. My dad passed away 6/18/23 from GBM after only 1 yr and I not only feel immense grief and pain but guilt…so much guilt that I could’ve done more 💔💔💔💔
Wise words. I am very sorry for your loss.
My mom also died with glio, My sister and I are both RNs and still it was a nightmare. She went from "I feel funny" to dead in 52 days. Please don't second guess your decisions, Your father wanted to hang on to his dignity he always had. Bless you in your grieving
We lost our beautiful daughter to glioblastoma in 2018. She lived 2 1/2 years with it. She decided to stop the chemo and refused the radiation and chose to live her best life. Hospice helped us care for her in her flat the last months of her life. I cherish every single day we had with her.
I supported my brother when he was sick with cancer. When it became clear that further treatment was futile and he started hospice, a dear friend offered the following words that resonated with me deeply: Sometimes it's hard to scale down the heroics we want to accomplish to save our loved ones and shift our focus to the quiet, peace, love and small gestures they really need. Your dad is nearing the end of his life, and although it's terribly unfair and you don't want him to go, the most loving thing you can do now is to simply be present. You are doing one of the hardest things we humans are asked to do during our lives, and you are doing it beautifully.
I’m watching this with a heavy heart. My brother lost his life to a brain tumor. I was his caregiver. I was hugging him when he took his last breath. I miss him so much. 🙏🏻
My 21 year old son died of this on Christmas 2022. I was a caregiver for 4.5 years I am just now not feeling exhausted.
I'm so sorry.
I am so sorry. Please be kind to yourself and know that you did something selfless and courageous for him. What a blessing to have a mom like you. ♥️
I’m so sorry for you loss
......😢❤
Xmas '22 was horrible. Audience extends its deepest condolences & wishes you all the best. Merry Xmas '23. Cheers!
I just lost my dear sister to glioblastoma grade 4. She lived for 2 1/2 with it and she was an amazing warrior. One time only she said, you do not want to know how I feel. She was extremely in deep faith and accepted gds will from the get go. Never shedding a tear, never saying why me, etc. She possessed great integrity and great humility. She was my best friend and I feel lost however, I will live like she did. My prayers go out to anyone dealing with this disease.
Thank you for this, yes, live as they did!❤❤
There are SOOO many warriors out in this world ugh bless all warriors
You are a wonderful son and amazing storyteller. Cancer really sucks. My dad died of head and neck cancer 19 years ago. He died within a year because he was diabetic and couldn’t take a full course of chemo or radiation. Watching somebody die is traumatizing because you feel so helpless. I wish your dad a peaceful journey to the other side. 🙏🏻
My dad died in 2017 and I still have PTSD from being his carer, you touched on many of those factors that caused the PTSD. It's a rollercoaster. And it's distressing to realise how chaotic medical care is. Take care and get therapy sooner than later if you feel like fully processing your emotions around it all in an intentional manner might help xx
I can relate to this. My father,15yrs ago died of this disease.
If you have this,your dumbed🙁😟...There isn't any cure for this type of cancer.
Read my comment, it was for so long and I too suffer from very severe PTSD, guilt and anguish. Praying for your recovery!!❤
PTSD nearly finished me off over the years (suicidal thoughts are a lingering nuisance), but my second therapist had an actual treatment. I had never heard of anything that helps, but his prescription was simple and completely DIY.
For 30 minutes before going to bed, do something completely non-stimulating. Listen to soothing music (no head-banging stuff), meditate, yoga, or any other things that don't include much input. TV is bad, reading is not as bad but still requires your brain to work more than normal. I chose meditation and in about eight weeks the non-stop sensation in my face that I was going to cry went away. After ten weeks all my symptoms disappeared or at least faded a lot.
On the same sort of topic (getting our stupid brains to settle down) I devised a way to get to sleep. Inhale for a count of four or so, thinking of a color. Exhale for a count of four, visualizing a field of flowers in that color. Inhale red, exhale roses or whatever. Inhale orange, exhale poppies. Inhale silver, exhale a field of some sort of silver flowers. Don't get hung up on technicalities, even if the color comes out wrong. I never make it five minutes that way.
As a physician, I have seen a lot of patients somehow find ways to not die in their children's presence or to suffer the indignity of having them care for them. They often will wait until they leave the room to eat or use the restroom. But you have done everything a loving child could do. You can't question it. We don't get rulebooks or education on death. All you can do is love them and try your best to honor who they are in their last journey. ❤❤
My mother always said she never wanted to be a burden, she never was and I told her so even when she was barely conscious. I pray, since my daughter is all o have, that I just fall asleep and not wake up to spare her from the trauma we both experienced caring for my mother. I pray that everyday.
I think they literally can't let go😢
Love that sentiment and call to action: " Try your best to honor who they are in their last journey." Excellent. Thank you!
My dad waited until we fell asleep around him. It amazing what they do for us
My heart goes out to you. Hospice does not need to be delayed until the patient is at death's door. They could have supported you at home earlier. You could have had more assistance with bathing and toileting, medication management, and equipment. It is a misconception that hospice is only for people in the last few days of their lives. I hope you are getting the help you need now.
I just want you to know how much I appreciate your incredible strength to make this video. I feel like it was made just for me as I consider making my family watch. I have terminal cancer, 3rd round, no treatment options. Cancer is next to brain stem growing into right temporal lobe, along trigeminal nerves and includes bones of my skull. I am a nurse, well was, but explaining to family from my perspective is difficult. I think seeing this from your perspective will help prepare them for what i already know is coming. I am married 30 yrs with 2 beautiful daughters, 4 grandchildren and of course other family i love dearly. I want to tell you that I maybe, somewhat understand a little of the frustration from the angle of your dad or atleast want to share how I feel so far. I feel guilt for having to give in to my body and not being able to overcome. My body has become the boss and i have no choice but to listen at this point. It hurts every part of my soul knowing what my family will have to see and the pain it will cause. It angers me that i can't be the fixer, the glue, the one who makes it all ok. I think the anger at ourselves comes out as anger and frustration with the ones we love. It doesn't help that the pain and cancer effects our thinking and processing either. We hurt so much knowing that pain and burdens are uncontrollable. That doesn't even touch on the shame and embarrassing thought of having to be cared for in humiliating circumstances such as incontinence ect. I am not there yet, but I can tell you that I already feel shame for things that haven't even happened yet. You are a kind & loving son to care for your father and im sure he is proud and very thankful. I can tell you that it is more peaceful in my heart when i have someone other than my family to care for me so im not burdening them. Maybe thats why things change when hospice is providing care compared to family. Its hard to let those you love see your weakness and easier maybe to accept that you need help and allow it when its a less familiar face in certain circumstances. I wish nothing but love, comfort and peace for your dad and family. I will pray for ya'll. (Yep, I'm southern 😁)
I really think this video will give my family some preparation and perspective. Thanks so much for sharing this personal journey and experience💚
Thanks for taking the time to write such a thoughtful comment and for sharing your experience. When you're healthy, it's easier to imagine that your body isn't the boss. Yet we're all one illness away from that illusion being broken. If you ever reach the point where your family has to see you in a vulnerable position, I'm sure they'll be more worried about your comfort and well-being than any temporary discomfort they'll feel at the situation. My dad's willingness to be vulnerable around me said more than words could ever express. I wish you the very best.
I am so sorry for what you and your family are facing. Prayers and thoughts are with you and your family Through the trying times ahead.
Susie..I’m sending love and hugs..I am in tears for you and your family..my father had acute myeloid leukaemia. Cancer is such a horrible disease.. 😢❤
My sister died of a glioblastoma. So hard.
My husband died on December 5 of glioblastoma. I cared for him the whole 19 months. I would do it again in a heartbeat. We were married 51 years.
I worked in a homeless hostel in London UK. Lovely Rob had an aggressive tumour on his neck. He had a phobia of hospitals. I tried to coerce him in to treatment. No good. He had a good quality of life for a few short months. So glad he stood his ground. I eventually realised I was trying to keep him here for me. Good for you Rob. Love and miss you. ❤
This video is a masterpiece. Your father was very lucky to have you to care for him.
I am recovering from depression from taking care of my Parents. You're a strong man. I pray you find the strength to overcome.
I lost my dad and brother to glioblastoma and my husband to pancreatic cancer. My family knows if I ever receive similarly catastrophic diagnosis I will simply go home and accept hospice care if possible. The cure can be as bad as the disease and adds nothing to the quality of life.
I can't tell you how much I regret "giving in" to my siblings' insistence that my elderly father receive brutal care for the cancer he didn't know he had and caused him no discomfort. He'd have lived longer and not spent his last years constantly traveling for doctor appts, radiation, and more. He ended up passing from hospital acquired pneumonia. He was better, safer, stronger, and healthier at home.
@@BlueButterfly7777 You never know how the ending will be, until the end. You did what you thought was best!
My mom died of glioblastoma. Before she died, she said she wished she hadn’t done any of the treatment. If I’m ever in the same position with such a terrible cancer, I would get euthanasia. It wasn’t available yet here in Canada when my mom was dying. The 30 days she spent in hospice care before she died was especially a lot of unnecessary and completely pointless suffering.
@@RockeraMJJ I appreciate your kind words.
@@BlueButterfly7777I’m so sorry. Go easy on yourself, you were slogging through some very difficult days.
I imagine this level of caregiving is significantly more intense, exhausting, difficult, and emotionally draining than caring for a newborn.
God bless
I wouldn't even say they're comparable. A newborn is so ridiculously easy compared to this and has rewarding benefits watching them grow and develop. With caretaking for someone with cancer you just get to watch them devolve more and more until the person you know and love has every modicum of self sufficiency ripped from them while they whither into a husk you don't recognize as your father as they slowly die. So yea significantly more difficult to the point I wouldn't consider them reasonably comparable.
Yes caring for newborn is about helping them to live. Caring for, in my case my child with GBM, was about helping her to die. The two could not have been further apart. The second one is unimaginable, horrific, brutal, traumatic, and should simply not be experienced by any parent. The first is just the opposite.
This is such a weird comment. Smh.
My husband died 6/18. 4 months after GBM diagnosis. My blessing, our blessing, was that something prevented him from understanding his diagnosis and prognosis. He was never afraid. I did. Felt and still feel all that you describe. I hope that we can all find peace. Our loved ones already have. You were, are a good son.
This is so hauntingly familiar. The relief and guilt I felt after he died fucks me up almost everyday.
Please don’t beat yourself up. You have nothing to feel guilty about feeling relief after their passing. Both of my parents passed from terminal illness and it’s totally normal to feel some relief when they pass. It’s so exhausting seeing them suffer day after day. You know you’ll miss them but you don’t have them the way they were before illness. I will have you in my thoughts and prayers.
God bless you. Please don’t feel guilty. It is beyond hard for us caregivers 😢
@@mijuajua4820 ,,,,MANN,,,is it ever...😣😪
I remember when I was told my Dad was gone. My first response was "thank God". I was glad he was not suffering anymore, and that our grief could begin in earnest. I was very angry that my dad had to suffer so much for no damn reason. That was twenty years ago, and I still miss him. I could really use his advice now that I am a grandfather myself.
I felt the exact same way about my father's cancer. He died in 2012. You put in words how horrible and unfair his Last times on this Earth were
My husband died in 2013 from Glioblastoma. There are no words to describe the agony of knowing your loved one is dying and the hope that they may be the one that will beat the beast. I learned everything I could about the clinical trials as well as trying all of the holistic remedies I could find. It was exhausting as well as terrifying.
This is a living nightmare and I pray a cure is found.
Thank you for this... As a scientist running a research lab (PhD not MD) working on identifying ways to control this type of cancer, I feel your frustration, in terms of the lack of progress despite decades of work, and in terms of the robotic and sometimes inhumane way they treat people in hospitals. I will require people in my lab to watch this video so that we understand what it's like and where in the patient experience there is room for improvement
My ex died from a grade 4 gbm. I think it’s insane how many people are diagnosed with this! There has to be some common denominator. Stay strong. You are doing all the right things. Bless you
Yes, I have seen now far to many. Our close friend died of it..I should say 2 close friends now.Then a father of close friend. Most of them did not want any chemo..had some surgery but not much. Tremendous caring 7/24. I feel for you. So fast, you never in remission, total palliative, no cure. Rapid growth. Sad for everyone.
What, they did not call any docs on call.?
4friends diagnosed this year; all jabbed
@@lisalynch629stop lying you do not know 4 people diagnosed with this.
@@lisalynch629STOP
My only sibling,my brother, died from grade 4 glioblastoma in 1988 at the age of 19. It was on his brain stem and from first symptoms to his passing it was 8 months. Then in 2018 my mom was diagnosed with the exact same thing at the age of 74. She lived for 8 months as well. I am forever thankful that my kids are adopted and don’t carry any of my genes. A few months ago, my horse knocked me over and I hit my head. When the ER staff were taking me to the CT scan, I was absolutely terrified they would find a tumour. After years of wondering if I had one growing, the CT was clear. I know given my family history, I’m not totally out of the woods but at least I can rest easier right now. I’m an RN and sometimes ignorance truly is bliss.
My brother just had his 3rd resection. His was an astrocytoma that upgraded with each resection. It’s now a grade 4. He’s been fighting this tumor since his early 20s. I’m so sorry for everything you have gone through with this horrible disease your dad dealt with. ❤
What does it mean astrocytoma??my dad was diagnosed w glio one month ago. This morning his pathology came in and said astrocytoma.
Hello from Sydney Australia.
I am 61 and 4 months into living with an unmethylated GBM.
Bravo on all you have done for both your parents.
Your eloquent description of what you have gone through is very valuable.
Thank you.
Graham
I hope your treatment plan goes well. Very best wishes to you from me in England.
Glioblastoma is a Beast !!! My husband died in 2018 after 15 months. His main one was located around where your Dads was but he also had two others in different locations but were not tested and were smaller.I know how hard it was to watch your father go through this.
@brendapeterson4637,,,I agree with u 100%,,,GBM is a Beast. My hubby passed away a year and 2 months ago after suffering from GBM for 2 and a half years.Im still in a state of shock and ptsd from watching him go thru this devastating, ravaging cancer. My deepest condolences to you because I can honestly say I know what you are going thru...😢😢😢😢
I'm sorry you had to go through this. You are a great son.
I lost my husband to Gliosarcoma Feb 2023. I so relate to your story and wished I had connections with others going thru this process. My best friends husband was dying with Glioblastoma same time as my husband was going through his battle. He only lasted 1 year and my hubs lived for 5. What “they” don’t share is after all the treatments you end up with a different person, I no longer knew my husband. He finally had to be placed in a home with hospice and spent his last few months where he no longer spoke, see, eat or communicate in any way. It was a long slow journey for us, I was his only caregiver (we had no children or family) close I took care of him myself. I speak out on behalf of caregivers they are the heroes to the persons that depend upon them. Thanks for sharing your journey and RIP to your father. You did the best thing you could have done for him and your mother❤️
I’ll be my sister’s caregiver when she eventually needs help as she did after her surgery. She was diagnosed 8 months ago. So far no seizures and we both fear them so much. Is there anything I can do to prepare for things like this son dealt with? Is it hard to find in home help? We’re both in our 70’s. She’s a widow and I’m single. Sending you healing thoughts.
My Mom, my Uncle (her brother) and my dearest friend all died from a GB. It is merciless. All my love & admiration to you for your bravery.❤
You remind me of my friend Donna. She cares for 2 parents well into their 90’s. She is an angel and so are you. No other human caregiver would be so caring. Your OCD is your gift to your dad. Amazing!
Likewise you may need to allow yourself to not be a caregiver as some just can't.
My brother died 4 months after being diagnosed with a glioblastoma at the age 47. Everything the doctors did went wrong. If we’d known what we know now, we wouldn’t have done any of it. The surgery went horribly wrong and made him virtually a vegetable until he died. It’s a devastating disease. I wish the doctors would just be honest. I will never put my family through this.
Some years ago, my mom's boyfriend asked me to help care for his father, who had developed Alzheimer's rather quickly. I noticed something very interesting that I only realized recently. That is, because I had met him pretty recently, when he was already in this condition, I had much more patience and was more observant of him than his wife and son. When you said you screamed at your dad in that frustrating moment, I don't blame you, it's much more difficult for you to process it emotionally (even if you think you're ok) because you saw the changes in his quality of life and behavior, and now you have to see him as a version of him you could have never imagined.
That being said, it was a difficult and stressful job for me too, yes, even though I thought I was ok, so I can't imagine what it was for his close family and what it's like for you. I also want to say that I had fun moments with him, we watched movies together, we listened to his favorite music, and he came up with the silliest sentences imaginable. He was the grandpa I never had and I miss him sometimes. RIP Tito.
Sorry for the ramble. Sending much strength your way!
I'm so sorry. You're a one in a million son. Bless you ❤️
You have been a champion for your dad and he knows it. It is okay to feel relief when the struggle is over. Prayers for peace for you snd your dad.
My husband was diagnosed in September, had surgery within a couple days, had radiation and died within 3 months. It was a Glioblastoma. This was 25 years ago. It's sad that it seems that treatment has not improved since then.
Looking back, I'm grateful that he didn't suffer longer.
Dear brutally honest caregiver: you have experienced nothing short of hell . I commend you and your Mom for your patience and dedication to your Papa. I am a nurse and send my deepest prayers for you and your Dad and your Mom. Thank you for sharing your experience with us and may God give you the strength you deserve and need until He calls your Dad home. Peace be with you always
My husband's brother had the same brain tumor and passed around 5 years ago from it. And. This horrible cancer doesn't have an exact pattern, rhyme or reason, clear perimeters. It's going to effect each person differently. And you need to understand this one true fact: you are doing what you can. Feeling guilty, or having agnst over not being able to know the right thing to do is normal. A therapist said this to me after I brow beat myself over the same issues you are struggling with: "Did you do what you could to help with the knowledge you had at that time?" You know you have, and that's all you cand do. No one expects anymore than that. You are being too hard on yourself, probably because you are an only child and you believe you're letting your Mom down. Sweat, sweat young man. . . Take a deep breath and just love your Dad. Both your parents must be so proud of you! I will hold you and your family in my heart and in my prayers in the days to come. Just found out he as passed. I will continue to pray, you wonderful young man.
the best account of what it's like to care for a GBM patient, bar none.
superb. I'm glad you're a writer. I hope Dad's suffering is minimized, and your guilt is allayed knowing you've gone above and beyond.
Your narration is amazingly well done and appreciated . Very professional. Thank you! I am sorry about your dad’s end but realistically we all have one.
Wow, I am blown away by your honesty. Caregiving takes a toll on you, mentally, physically, and spiritually, espesically when caring for a loved one/ family member. It's a constant worry. It can be overwhelming because your trying to balance out all areas of your life but your also trying to be present and helpful and take care of someone you love. The after math of the grief is just as bad because your all worn out. Nobody talks about that, it's a healing process for sure. Thank you for sharing this.
Hope everything is going as good as it can for y’all right now. I lost my mama 11 days ago to GBM. She would t have anything to do with me the entire time… only my sister, so I never saw her again. In fact she said I was a loser and horrible horrible things. Tumor? I will never know as she kinda has always said stuff like that to me. I do feel better knowing she isn’t suffering anymore. That is an awful awful disease. So very hard on the family. My thoughts are with you
Sorry to hear that,went through something similar myself, hope your doing ok x
I'm very sorry for your loss. It sounds like you were navigating an extremely difficult situation.
So little is known what can cause this disease. My uncle Reuben had it from Derby England. My dad organised a charity night after his death to raise money for a brain cancer charity. I hope 1 day all cancers can be treated. We have come a long way since even 100 years ago. Hopefully new medicines will come forward. Jon Stapleford Nottingham England
I feel sad ur mum said nastys to you mbe u/both clashed in younger years or mbe u may have been a chalkenge being the firat Doesnt matter noq l want u to know how awesome u are to admit probs ur mum put on you it was unfair but the prob was ur mums past her upbringing her parents etc etc We are all affected so brave one stay strong love who u are Life be in it
Sorry phone spelling not me it second guesses ALL THE TIME
You are a wonderful son for helping your mom take care of your father. It is our duties as their children to take care of them, but not many people believe in this. After your father has passed, you will never find yourself, saying, I regret taking care of him. You will only find regret in doing the opposite not taking care of them. Enjoy the last days that you can enjoying your dad the best you can.
I just lost a friend of mine on November 25,she was 63. She had it 5 years. We’d known one another for 50 years. She was a lovely sweet lady,and didn’t deserve to suffer like she did.
Bro your pops is a fortunate fella to have you...his stubborness is likely due to his nature of being so strong and independent, and doesn't like you seeing him that way. You are doing the right thing and he knows you love him!
There is absolutely nothing to be guilty about. It's 100% normal to be exhausted and to be grieving even before your loved one passes. You have done an absolutely incredible job caring for your dad. Glad to hear he got to come home, which I know you all wanted. Please consider using the hospice bereavement team, even before he passes. They're there to help at any stage of the hospice admission.
I lost my stepdad in 2020 to gioblastoma. Your story was giving me deja vu and how incredibly similar it was to my stepdad. Such a debilitating disease. Even though your dad wasn’t able to talk, if he could he would tell you how great of a son you were to him. God bless you and your family and always remember that he is no longer suffering.
I lost my Mom 1-1/2 years ago - not from a brain tumor but from repeated cortical strokes in her brain over a period of nine months before she passed away. I was her medical power of attorney and in that role of caregiver beside her I experienced many of the same emotionally difficult issues you describe. I was left with PTSD over many of the horrific medical and caregiving issues. I really want to thank you for your courage and foresight to put your story out to the world. Since hearing what you went through, I feel a new sense of comfort that someone else out there truly understands the caregiving difficulties, agony, emotional rollercoaster, frustration with the medical world, and the utterly helpless feeling along side an acute desperation in trying to do something - anything -to help. The experience changed me in ways I never anticipated, and I still feel the visceral pain of remembering my mom in a type of mental and physical pain that no doctor or medication could help her out of.
So glad you made this video. My dad died in 1995. I remember sitting on the floor outside his hospital room hearing grade 4 glioblastoma. It was a 5cm mass, and they removed as much as possible. The prognosis 3 days to 6 months. The side effects from the surgery were unexpected and horrific. Psychosis after surgery was never discussed, and the meds made him a shell of himself. He died 6 months to the day of the diagnosis. He did try a clinical trial, but after he loss his eye sight he stopped the treatments.
My wonderful mother survived having this for 10 years age 58-68. The tumor had grown so large it was wrapped around her spine. Thank goodness she had the best surgeon in Cleveland that saved her. She had occasional radiation but refused chemo. She instead. Took IP6 with inositol. For the first three years doctors kept saying she only had months to live. She soldiered on and died exactly 10 years to the day she was diagnosed. Miss her every day and so much love to anyone dealing with this
Believe me, newborns are way easier to take care of than a sick adult, especially a sick adult who has always been used to being in charge.
My dad had this. The doctor recommended surgery, I didn’t want him to have the surgery. I’m in the medical field so I know there is no surviving glio. From start to finish 3 months and he was gone. Terrible thing to see him die
I understand. It is much less stressful to take care of “patients” than it is to take care of a family member, especially a headstrong father who was always used to being the person giving the orders. Don’t be hard on yourself. You are doing as much as you can. Best of luck to all.
I loved your reasoning regarding your wish to reciprocate for
The responsibility your dad had in making your life easier with support you needed. Few children are as accountable to parents. I addressed his spiritual needs, used a sense of
Humor and kept thinking> this could be the last few minutes
Or hours or days of his 86 years! And I told him I love you over and over......most of his frustration seemed due to his awareness that his body was shuting down and that he was
Unable to fix it. I admire your courage and hope to see your next post.
I feel you're pain, my dad passed from multiple traumatic brain injuries from a motorcycle accident. Everyday was a roller coaster for all of us. I pray for you and your family, it's not easy. I learned to enjoy even a second of clarity he would experience. Take care of you as well. Much love
Thank you so much for putting this video out. We found out on September 23 that my mom has a stage 4 Glioblastoma tumor and it's in a place it cannot be operated on it all. She's been through the 6 weeks of chemo and radiation and now is on a month break before the Chemo starts again. At this point she's thinking she doesn't want to do the Optum Option that is available. And I don't Really blame her. She said that if it was going to cure her that would be 1 thing but where it can't she doesn't think she really wants to do that and I told her I'm completely behind her 100% and whatever she decides. I am a full time wife mother and employee and now care-giver to my mom. It breaks my heart everyday to watch her go through what she's going through. She was so strong and healthy and the other way until this horrible disease showed it's ugly head. I've been looking for the answer to some of the questions I have and you provided a lot of them when no one else seems to want to talk about what's coming. I'm so sorry for what you and your family have gone through and I wanted to thank you so much for taking the time to do this video. So many of the feelings you have heard the same ones I don't want everyday
My 4 adult children and I took care of my husband similar to this story for 8 months. We miss him terribly! I was grateful that my children was there with me and we had some good memories in his last few months.
You are a champion! I cant tell you how much I appreciate this story. Thank you!
My dad was diagnoised a month after i lost my mum to cancer similar story its tough me and my partner cared for him you are such a good son well done your story is just the same as mine and my dad was like your dad its shit and heartbreaking like you i dedicated all to his care and so glad to be able to do that hope you keeping well ❤
My 49 yr old husband died of this. He was diagnosed oct 3rd and died 2 months almost 3 months later on Dec 28th. They didnt know much about his tumor at that time. This was in 1996 and I remember the Doctors telling me it was just starting to be common. It was the hardest 2.5 months of my life. Filled with heartache for what he was going through. He lost his speech and appetite. He had seizures and I fekt helpless.
It is not standard in ANY hospital to delay administering medication due to “nurses’ shift change.” There are urgent/emergent procedures in place to obtain & administer drugs in this type of situation. What happened to your dad was not only unacceptable, it was quite possibly malpractice
Sadly it's happening all too frequently in medical facilities across the US.
I experienced the exact same issue with a relative at one of the best hospitals in the country (US). It is not unusual- in fact, we rotated who stayed overnight at the hospital with her, and I started and advised other relatives to start asking the nurses 2 hours *before* she was to receive medication if they wanted her to get her meds even close to on schedule. These were *pain meds* . She was suffering. She stayed at the hospital for 6 days, and they were unable to get the pain under control, so they sent her home.
Don’t let anyone tell you that you will have a painless and comfortable death because in many cases, it’s simply not possible, especially when it comes to cancer. I am not angry that they could not control the pain- I am angry about the numerous times I heard the pain would be controllable and it would be OK. It wasn’t.
My heart still hurts for her 16 years later.
I lost my husband to Glioblastoma at 42 years old. He only lived 9 months after his first major seizure. This caretaker journey was traumatic and awful to watch. I was his caretaker until the last 2 weeks when he was admitted into the hospital. He was unrecognizable and so swollen from the dexamethasone, he wasn't able to get off it because he kept having seizures. Andy's mass was in the deep middle of the brain and the frontal lobe left and right. Butterfly GBM even more deadly and effects 14% of people with Glioblastoma. I can relate to your journey it's truly awful and has given me PTSD and flashbacks and anxiety and he's been gone a year and 8 months. It's still no easier and I am not any happier.
You are amazing for advocating for your father and taking care of him during all of this ❤
Thank you for your stunning pure honesty. You and Mum deserve all the good in the world and your father surely loves you folk immensely, even if he cannot express it.
Appreciate so much the deep, personal sharing and the extreme detail of the process, beyond helpful
AJ, I'm terribly sorry for what your family had to go through. I wish you and your mom rest, rejuvenation, and peace.
Thank you for sharing your experience; since being diagnosed, I want to prepare my daughters of what to expect without fear but educated on how to respond. Keep up the good work and know as long as you have your best , that’s really all you can do.
Hello, thank you so much for making this video! I'm 37 and was 34 when I had an awake craniotomy, but I live with Grade 2 glioma, so still here...I really felt when you mentioned your dad having seizure after seizure, I cannot understand how was there nobody to help him in a hospital, to me this part of your video was the hardest to stomach. I cannot imagine what it must be like to be in the caregiver position in this situation, so I can only say - I am so sorry you had to go through this. However, I am grateful for your making this video so honest, because I have seen some other videos from survivors that are just well, don't feel accurate or fully honest and informational, but your video is.
I won't bore here with my story, just wanted to say thank you.
You have a fantastic memory of these events,best of luck in the future.
My mother passed away of a rare blood cancer, she passed in 3 weeks of her diagnosis. I was already a CNA but after her death I became a Hospice CNA. I only had maybe 4 patients with Glioblastoma in my three years working in hospice. It truly is a heartbreaking cancer. All were male and two were very young. 46 and 52. They declined so quickly and to see them get frustrated and themselves is so hard. I learned early on in long term care, not to argue as it only makes matters worse... something I think we all learn the hard way as you did. As hard as it may be for us to try to put ourselves in their disposition it's what has to be done. They're right, do what they want ect. I also noticed what you had brought up about your father allowing the nurses to provide care. There's so much pride we carry around, ad your father sounds like the type where he did everything for his family and could never fathom being washed or toileted by you guys. However nurses and CNAs have not seen him his whole life and take care of others for a living. That's just the standard American's have. Other cultures like Spanish, Philippines and India are more used to their family taking care of elderly and sickly.
Please don't carry the guilt around with you, it will destroy you. Doctors don't always do what's right and do get it wrong...they're just humans like us too. I know how frustrating it is to see your father daily and know exactly what's going on to only have the Dr treat you like an idiot. Sadly there's not much You can do besides seeking a different doctor or contacting an ombudsman. You really are doing a great job with such a horribly difficult condition. Prayers that he doesn't or if he's passed, didn't suffer for to long.
You are a hero and champion for sharing this detailed account. Thank you.
You are a hero, i hope after this whole ordeal the rest of your live is filled with peace, you’ve earned it a thousand times over
Holy crap this video completely changed my mental view on certain diagnoses. Your a stronger man than I, I couldn't even hear what you had to go through with your father in one go without starting to breakdown. Your an absolute hero and did as good as anybody could with the impossible questions and decisions presented. Try not to regret too much on the choices you made when you couldn't have had all the info.
Your story of caregiving is amazing in its altruism and honesty. Total respect!
You are an incredible human being. I do take issue when you dump on yourself about if you did the right thing or doing enough etc. You are a great example to us all. What you've done for your dad and your family is beyond words. You made such a massive sacrifice of your own life to better another's. Your dad could not be more proud of you,I'm sure of this. Not all superheroes wear capes brother. Thank you for sharing your story. Caregivers (in all forms)..the most important and usually thankless job out there.
You are going through a very difficult time. I looked after both my parents and it was very traumatic. God Bless you, you are a wonderful son. . Praying for your Dad.
Youve described my experience. Its hard but we help our dads out of love. Keep strong
My Mom was diagnosed with gbm in 1987. My heart goes out to you and your family. I love how you stepped up for your dad . At the time my mom was diagnosed only 1 hospital that had a ct scan. MRI,s didn’t exist yet. Took cobalt radiation to the head. She took 2 chemo treatments and the original tumor, plus 3 more, grew back. That was 3/17/88 and they gave her 2 to 6 weeks. She passed in nov of 1988. She really suffered. I wish you and your family the best. You are a wonderful son. God bless!
As a physician assistant who specifically practices medicine within the field of neurosurgery, I appreciate a patient-centric perspective of the challenges associated with GBM. Your father reminds me of many of my patients with the exception of a son who is extraordinarily composed and well spoken; willing to open up and share with others. This is exceptional.
Indeed it is a privilege to treat and be apart of patients lives during the most challenging times as it is a privilege to hear this story.
Thank you, and thanks for your work. It's not an easy job.
You've been a perfect care giver and a beautiful son. Always your dad was/is at the centre of your decisions. God bless you and your family ❤️
What an amazingly honest video! You are an amazing son, and you did your best! Hope your dad is now comfortable ❤
I listened to your story very intently. My mama died in inpatient hospice 12/26/20. Although your father has a different illness than the one my mama had, you sound so much like me. The questions, the emotions, the trying to explain to someone that can’t understand, wondering when to do certain things, wondering if you’re making the best decisions, etc. I couldn’t help but cry. God bless you, kind son. God bless you all.
You are an angel. I hope that if I get to that point wayyyy down the road, that my daughter and granddaughter and great granddaughter will some how have the same love and care for me as you have for your precious dad. God bless you
Such an honest and realistic recount of the glioblastoma caregiver journey. I spent a year there with my late husband. I feel your pain. You did your best and you can't do any better than that.
Thank you for sharing this very personal story. It is heartbreaking.
Can tell you are a loving, thoughtful, and detailed person; your family is blessed to have you by their side; with that disposition, sure could make the kind of writer, you envision to be!
A tremendous narrative of the care your, mother's and other's care of father's terminal illness. Nothing short of heroic.
My mother died a GBM back in 1987. One day she was disoriented and had a difficult time bringing her thoughts together. The very next day, she couldn'r speak or walk. A few days later she had a craniotomy. The doctor removed as much of the tumor as he could. She could speak again but not walk. She had radiation treatments until she was maxed out on them. She lived at home, pretty much pain free for 11 months before passing. She was only 60 years old. She never smoked or consumed alcohol. Dick Howser who was the manager of the KC Royals, was diagnosed with GBM exactly one day after my mother was. He died one day after my mother died. Such an odd coincidence.
Thank you for your direct and compassionate storytelling. We went through this with my father in law 7 years ago now. It's a HORRIBLE disease and your video documenting your experience while caring for your dad during this illness will be so helpful to other families.
Thank you for such a comprehensive presentation. My oldest brother succumbed to this horrific disease within 3 months from diagnosis post resection just 1.5 years ago. Prayers for all affected by GBM. You are an amazing speaker, very intelligent and enlightening.
I’m so very sorry. You did the best you could for him.
What a powerful story AJ. You stepped up to face all immense challenges that this illness entails. Then after this prolonged hardship, you have the courage to replay this sad process for for our benefit. What an amazing son you are., BLESS YOU and those you love.
Thanks for sharing your story and its raw honesty. I can relate to your journey and feelings so much. I don't know if anyone else has mentioned this. Perhaps your father realized at hospice that your care giving was as special as he could possibly get. Being such a determined and rugged individual, I imagine that it was difficult for him to understand how committed you were to his well being and health. Along with the other changes occurring, I think that in his heart he was able to accept that being at home with you and your mother was best for him. He must have been be so incredibly proud of you even if he didn't share it verbally ❤
What a difficult time you've had. You're a saint to take on such a role. I have GBM, surgery Christmas two years ago and the regularly treatment. So far, so good and I think my tumour size was a lucky chance. My first symptom was speech problems and thought I might have been starting to have have Alzheimers. Because I was diagnosed early my tumour has not grown. Two years on, I'm still ok.
Hope you are coping with your father's care and that his inevitable passing will be comfortable for all of you. xx
What a story --- my heart goes out to you.
Great video. My father was diagnosed with severe Multiple Myeloma last December and a week later was in emergency a few days from apparent death. The following months were similar to caring for your father. He is alive but every day is a struggle for him and my mother. I chose to not work and help care for him and that was a great feeling but the hardest task I have ever willingly chose to do. I can empathize with your effort and am sending positive vibes your way. ❤
Thanks for sharing. Lost my mom after a long battle with lung/throat cancer in 2016. You're a saint bro