Glioblastoma: Anyone else struggle with being a caretaker?

I'm new to this support group but not new to being a caregiver. My husband is now two years and four months out from diagnosis of Stage 4 Glioblastoma. We are lucky he has lasted longer than the average time of survival. He was 75 at the time of diagnosis and has always been in good health. He has undergone surgery in April of 2023 (very successful) and it was nearly two years when the cancer reoccured. He had resection surgery in May of this year which was successful. He did well for a few weeks but has gone downhill since then. His original symptoms during the first two years was forgetfulness, difficulty in retrieving words and fatigue. His symptoms now have worsened. Some days he is pretty good, others he is forgetful, very confused and fatigued. Fortunately he has no pain and is still able to do a lot, although it is less and less as time goes on. He no longer drives as it's possible he may have suffered a few little seizures. When first diagnosed we were both scared, upset, sad, confused, frantic, terrified. There was not a lot of caregiving necessary at first except for trying to understand what he was saying and mostly dealing with his depression. Now caregiving is much more difficult. He is so upset he can no longer drive and feels "less of a man" for not being able to know how to fix things, or not being able to do some of the mental and physical things he used to do. He is struggling with balance issues. This is where being a caregiver is difficult. When he gets confused, forgetful, substituting words or gets fatigued I have to realize that he can't help it and there is no sense arguing with him or trying to correct him. That only makes things worse for both of us. It's a hard lesson to learn. It is also very hard to watch him deteriorate. My journey is emotionally up and down. I have to let him have self-respect while making sure that he is safe. Making sure he is safe makes him feel angry and he lashes out when he needs help. It's so hard to accept that his personality has changed but I have to deal with it the best I can. I am fortunate that I live in a great neighborhood with friends who will be there at a moment's notice. If you are a caregiver I recommend that you let yourself have some down time and distractions for your emotional sanity. Go out for coffee or lunch with friends, or stay involved as much as possible with other activities. Don't be afraid to ask for and accept help. I don't go a day without thinking about cancer and what is happening and what is going to happen. I think the very hardest thing is watching him go through dealing with a fatal disease, not knowing how I would act if our situations were reversed. My top wish to make him know he is loved by me, our families and our friends and that we are all there for him. And to all you caregivers, make sure you take care of yourself because he/she really needs your support and love.

I’m very sorry you have to go through this. It’s very difficult for you both. I understand how difficult it is to try to not get upset when they can’t find words. My husband has aphasia since is second surgery which was to remove radiation necrosis which is dead tissue in his brain. Aphasia is difficulty finding words. I am very distraught every day trying to help him deal with his disease. Because even though he is inherently lucky he’s struggling every day. Your post really helped me. Thank you for sharing.

Welcome to the group, I liked what advice you put out there. I was one
step down from glioblastoma with my tumor. Have my daughter taking me to
appointments, a caregiver 4 days a week. Had multiple seizures and still
can for the most part take care of myself. Can't drive for another year,
had a lot of what your husband has already gone through. I might be able to
answer a few questions you might have. This has been quite the challenge
but I am a fighter, credit my survival to my daughter. 11 months no
seizures then back to start again. Reminds me of 50 first dates but with a
lot more work coming back. This time we're going slower on exercises. Next
week go back to get 3 month scanning for cancer. Last tests had me
cancer free. Sorry for the book . Hope things get better for you both 🙏

My surgery was April 2023. Anxiety was my most difficult thing. Still some but better. A very large learning curve and I still weekly help caregiver to a disabled Vietnam tank commander with 3 types of cancer. Like me also lost his wife and he barks at me when I try to help. However if worded right he thinks about it. Lunch time, have a blessed day and ssk if you have any questions. Thank you for sharing your post 📫

I am so sorry about what you and your husband are going through. I wish we had some easy answers. Each day is a challenge and I know about the emotional roller coaster we are on. I often question myself if I'm doing things the right way. I treasure the good days my husband has and worry when he's having bad days. Caregiving is very hard, especially when we have to try and figure out they're trying to say. But the hardest thing is seeing and dealing with his depression. It's such a helpless feeling. I don't know how much more time my husband has. He really wants me to make some time for myself and I'm doing that (feeling guilty about it at the same time). But as his symptoms worsen I will be at his side full time. He has decided no more treatments except he may try Avastin to help ease the symptoms to give him a better quality of life in the time he has left. As for your time as a caregiver, I know how tough it is to watch your husband struggling. Stay strong, take good care of him to the best of your ability and take care of yourself. That's so important for your sanity and for your peace of mind.

Anxiety ... I agree that is so difficult to deal with. I hope you are doing well and kudos to you for being a caregiver for a person struggling. I know what's it like to have a person with cancer "bark" at you but I just have to realize that they are scared and frustrated so we can just hope we are helping them I'm so sorry you have lost your wife.

I appreciate hearing from you and are hopeful you remain cancer free. You have already gone through so much and I believe the fact that you are a fighter will help. And you are blessed with your caretaker daughter. My husband is struggling now with more and more symptoms but is still able to do a few things. I'd be interested in hearing how you think and react to what you are going through. As a caregiver I can only imagine how I would react if I was the person dealing with cancer. I find that the patient and the caregiver have very different thoughts running through their head. If I could only understand more clearly what a person with cancer thinks.

thank you for being so kind.
fear and depression go hand in hand. i struggle every day but try to help others best i can. doesn't matter who as long as they can get something out of the conversation that helps. have a blessed evening and if you ever have a question just ask. or if you feel like it call. I'm starting over again for how many times i don't know but help when i can.

sending prayers for you both.

was in Montana taking care of bill which we still are friends. i talk weekly and if he needs something special i have my brother take action, brother lives close and took over for me helping bill. i moved to Virginia to be with my daughter not knowing i had a huge tumor growing in my brain even as i traveled to get here. my daughter has saved my life numerous times. i got home here in December of 23 and march 24 they removed the tumor and i had radiation and chemo and seizures after that, i have to go for now but will continue on my phone about coming back from everything and maybe be able to help you both, chat soon , i need to eat some food and help pit away groceries my daughter picked up for this family. i live with her and her significant other and my grandson .

Update on my husband. His symptoms have continued to get worse and he does not want any more treatments. So we have opted to get on Hospice which I highly recommend. Hospice goes for six months and can continually be extended. But when there is no hope for survival of a terminal disease it can provide vital help