New here- husband has terminal brain cancer. Need support

[Girlonfire]

I'm new here but I'm looking for support for dealing with my husband having brain cancer. Without treatment he has 3-6 months to live. With treatment he has 1-2 years. The average is a year. We are doing treatment and we start chemotherapy today and radiation tomorrow.  I'm afraid to lose him. I don't know what kind of life I'll have or how to be alone. I just think I'll be so lonely. Grief is the hardest work there is and I don't want to do it. How did anyone else out there deal with anticipatory grief? Thanks for your support. 

[seachelle]

Hello, so sorry you are going through this.  Anticipatory grief is a blessing and curse.  Ultimately, anticipatory grief only presents itself when the death of a loved one is imminent, and that is where the curse comes in.  It's so draining and defeating to go day after day carrying your fear around with you.  It's also a blessing in a way.  Many people don't get time with a loved one before the loss. The occurs suddenly and they have no time to make arrangements, say all the things they always wanted to say, or say goodbye.  You mention fearing being alone.  Grief is very isolating.  People are scared of it so they are often not as supportive as we need them to be.  I don't know what your existing support network looks like, but I'd recommend joining an in person support group for caregivers, or an in person grief support group.  Due to the severity of your situation, I would also recommend 1:1 therapy.  You will need to have someone who can take the burden of your thoughts and fears without running for the hills.  Lastly, remember that if your husbands death comes to pass there are still people out there for you to connect with.  There are friends to make and causes to champion with others.  It sounds trite I know, but if and when the loss occurrs, we have to remember that being alone is a temporary state and it can be mediated.  The loved one doesn't want us wallowing in sadness at home.

[Rylee]

Hi Girlonfire,

I'm so sorry for what you're dealing with. I know how hard it is watching someone you love die. My mother died May 1st and watching her dwindle away was so incredibly hard. 

You're right dealing with grief is hard work and you do feel alone. I know my situation is not the same as yours. I've never lost a spouse but when I was watching my mother it was the most difficult thing that I have ever done. But as Searchelle said, a lot of people don't get the chance to talk with the loved one who passes because they pass quick. I would take every opportunity to tell your husband how much you love him and work everything out that you can before he passes. I did the best I could to say everything that I needed to say to my mom and let her say everything she needed to say to me. I recorded her messages to everyone in the family that she wanted to say her last words to and say goodbye to. I felt that was important. 

We took lots of pictures with her and listened to her stories. She wasn't able to talk very much towards the end because she had pneumonia and couldn't breathe very well but she did the best she could and it helped a lot to get the pictures and the videos and talk. That might help you during this time. Every day is a gift and when your husband is gone if you do all you can to get videos, pictures and talk about things it can help. It won't take the sadness away but getting everything said you need to say and let him say everything he needs to say while he still can will help both of you. 

A lot of times people do stay away and leave you alone, but it's not that people don't care. They just don't know what to say sometimes. I have a horrible time when in person saying the right thing at the right time. I get my foot in my mouth and say just the stupidest things. I don't know why. I recently went to the funeral of someone I knew and put my foot in my mouth so bad I wanted to crawl away and cut my tongue out. I think a lot of people might be that same way and so would rather stay away than make things worse by saying the wrong thing especially at such a difficult time as the death of a loved one.                                                                                                                 

The people here in this group have helped me a great deal. It's only been four and a half months since my mom passed and I still have my days I break down and bawl my eyes out because I see something or smell something that reminds me of my mom and the people here have helped me through some of those very difficult days. I hope I can be one of those people that help others too. I'm still pretty new at this but I hope something I've said here will help you. 

Rylee                                                                                    

[kayc]

Welcome to this site, although I wish you didn't have reason to be here.   My husband died suddenly, it was a shock, and he was barely 51 so I certainly didn't expect it.  When my mom died (dementia), it was little by little, and I definitely went through the anticipatory grief...the same when my MIL died (I took care of her nearly three years when she was bedridden with cancer, along with my FIL's help).  I felt that the time we had together was very special, yet very hard.  I wouldn't trade it for anything.  Others might feel differently.  We all transverse this journey differently.  I wish we'd had internet back in the days I went through it with my MIL, people said go to support groups, there was never time!  I was in survival mode, I had little babies to care for at the same time.  Looking back, I don't know how I got through it except one day at a time, you just keep going, doing what you need to do.  It's good to remember to enjoy the bit of time with them you have and not let it all be about caregiving...easier said than done.  Employ hospice, they were wonderful and the difference between sanity and not.

If you can get family members to come help out while you get your hair cut or go to the doctor, that'd be good.  And come here, vent, pour out your feelings, that's what we're here for.

[enna]

 

You have come to the right place as you go through this very difficult time dealing with your husband’s brain cancer. I am so sorry to hear this and can empathize with your fear of losing him. I spent five years going through what we know as anticipatory grief as my Jim failed to thrive after the diagnosis of ALZ disease. I did not want to go through this either but that was my reality. Toward the end, our Hospice of the Valley team provided the support I needed for me to remain his wife as I partnered in caring for him. I did not want to be labeled only as his caregiver. I wanted to remain his wife even though caregiving was part of what I did. One day at a time was how we lived. I did not look beyond daily activities. My focus was on trying to enjoy each day. Support was so necessary for me. I could not have ever done what I did without the help of the people around me. I learned how to accept and ask for help. I tried to take care of myself during the time others were caring for Jim. I was so grateful when friends and family were there to share this time. When someone came to visit Jim this was when I did our shopping, visited my dentist, had lunch with a friend, or just slipped away and sleep for an hour. When Jim needed more care (he was home) I hired a nurse to help along with the hospice team. I called his friends and asked if they could visit for a few hours while I kept a doctor appointment. Because I was getting excellent advice from my Hospice of the Valley team I was able to recognize when things were getting too much for me to handle.  I took advantage of the respite care available during the end and I was able to collect myself and spend the final days being his wife as others took care of Jim’s daily needs. Always remember that you are soul mates and you are first and foremost his wife.  Remember that you will not be able to do it all. Ask for help. People will not know what you need so tell them. Early on take care of making sure all his wishes are known. Prepare living wills if it hasn’t already been taken care of and have medical and financial power of attorneys. If done now it will help when you are dealing with other things. Most of us do not think of these things. Who would?

Remember, you are not alone.We are here to support you.

[JamiePeters]

Sorry to about your husbands brain cancer. As cancer is a life threatening disease, so the cancer survivor needs much assistance. Once the cancer is diagnosed, the patients and their family member come with a worry, that's how the cancer can be diagnosed. My uncle has been diagnosed with the brain cancer, so one of friends suggested to take help of radiation therapy Suffolk and visit their website to get more information about their services and the technologies used by them to cure the cancer.