Members BryGuy Posted January 9, 2021 Members Report Share Posted January 9, 2021 Hello, it is great to see this forum. I felt like I was alone. Since I lost my wife Agata to GBM on April 27, 2020 I feel so lost and empty as I’m sure many of you do. Agata was a beautiful and caring woman and wife who was my soul mate, she made me a much much better person through our 22 years together. She fought hard for 30 months, we were in San Diego at UCSD, then back to her home country of Poland and made monthly trips to Duderstadt Germany for trial Dendritic and Virus treatments. We left SD because they told her if she wanted to go home for her passing, we had to go then or she would never be able to travel, so we moved back immediately. We have a house here, so it was a safe place where she felt good. We arrived back on April 1, 2019 and she survived another 13 months. The last 5 months of her life scared me deeply and haunts my dreams. As her tumors started growing, she lost most of her cognitive ability and started becoming and eventually was paralyzed on her right side. I had an L1 vertebrae replacement surgery a month before she started to deteriorate quickly, so was not in the best shape myself. When COVID hit, no Doctor or Nurse would come to our house, so I had to research end of life timeline and symptoms to ask her palliative Dr. for the needed medications. Her mom was with us, but she was in complete denial, which I can understand. I had to care for her 24/7. Each night I had to wake every few hours to give her the required drugs, drips and all other care required to make her as comfortable as possible. Hospice and hospitals were not an option due to COVID, even if it would have been, I couldn’t do it because she would be alone and I’d never have been able to see her again. She gave me a wonderful life, so I cared for her with every bit of love I had until her final breath. I have no idea what life holds now, each day is a struggle, so would appreciate any uplifting healing stories. I feel like I’ll never recover. I knew it was coming, even prayed for it (major guilt) but losing her was much more difficult than I could have ever imagined, it is so final. I hear it only gets different, not really better? Luckily my back surgery survived, I was not supposed to lift more than 20 pounds, lifted 140 daily several times a day till she was fully bed ridden a few weeks before her passing, so was blessed in that regards. Thank you in advance for your support! Link to comment Share on other sites More sharing options...
Members Gail 8588 Posted January 9, 2021 Members Report Share Posted January 9, 2021 BryGuy, I am so sorry for your loss. For those of us fortunate enough to have found our soul mate in life, I think we do carry them in our hearts the rest of our lives. But it is not the painful, mind-numbing desolation of early grief. It does get easier with time. Our grief journey is unique to each of us due to our individual circumstances. However many of us do have some common experiences. One is guilt, that we didn't do everything perfectly. Of course we didn't, we are human, frail and imperfect. Clearly you did so much for your love. You did all that you possibly could. You will need to let go of thoughts of guilt over the what ifs and should haves your brain will conjure up. Everything is so hard when your life has been shattered by such a loss. Try to be kind to yourself. Come here to vent or question or just read about other's grief journeys. There is some comfort in knowing you are not alone. I am sorry you have reason to join us here, on this journey none of us chose to be on. But we will do our best to help you, as others helped us. We understand, as our lives have been shattered too. Gail Link to comment Share on other sites More sharing options...
Members BryGuy Posted January 9, 2021 Author Members Report Share Posted January 9, 2021 Thank you Gail Link to comment Share on other sites More sharing options...
Moderators KayC Posted January 9, 2021 Moderators Report Share Posted January 9, 2021 I am so sorry for your loss but glad you found this site and are expressing yourself so aptly. It helps in processing our grief. I hope you'll continue to come here and read/post, it was a site such as this that saved me when I went through it. I want to share an article I wrote of the things I've found helpful over the years, in the hopes something will be of help to you either now or on down the road. TIPS TO MAKE YOUR WAY THROUGH GRIEF There's no way to sum up how to go on in a simple easy answer, but I encourage you to read the other threads here, little by little you will learn how to make your way through this. I do want to give you some pointers though, of some things I've learned on my journey. Take one day at a time. The Bible says each day has enough trouble of it's own, I've found that to be true, so don't bite off more than you can chew. It can be challenging enough just to tackle today. I tell myself, I only have to get through today. Then I get up tomorrow and do it all over again. To think about the "rest of my life" invites anxiety. Don't be afraid, grief may not end but it evolves. The intensity lessens eventually. Visit your doctor. Tell them about your loss, any troubles sleeping, suicidal thoughts, anxiety attacks. They need to know these things in order to help you through it...this is all part of grief. Suicidal thoughts are common in early grief. If they're reoccurring, call a suicide hotline. I felt that way early on, but then realized it wasn't that I wanted to die so much as I didn't want to go through what I'd have to face if I lived. Back to taking a day at a time. Suicide Hotline - Call 1-800-273-8255 or www.crisis textline.org or US and Canada: text 741741 UK: text 85258 | Ireland: text 50808 Give yourself permission to smile. It is not our grief that binds us to them, but our love, and that continues still. Try not to isolate too much. There's a balance to reach between taking time to process our grief, and avoiding it...it's good to find that balance for yourself. We can't keep so busy as to avoid our grief, it has a way of haunting us, finding us, and demanding we pay attention to it! Some people set aside time every day to grieve. I didn't have to, it searched and found me! Self-care is extremely important, more so than ever. That person that would have cared for you is gone, now you're it...learn to be your own best friend, your own advocate, practice self-care. You'll need it more than ever. Recognize that your doctor isn't trained in grief, find a professional grief counselor that is. We need help finding ourselves through this maze of grief, knowing where to start, etc. They have not only the knowledge, but the resources. In time, consider a grief support group. If your friends have not been through it themselves, they may not understand what you're going through, it helps to find someone somewhere who DOES "get it". Be patient, give yourself time. There's no hurry or timetable about cleaning out belongings, etc. They can wait, you can take a year, ten years, or never deal with it. It's okay, it's what YOU are comfortable with that matters. Know that what we are comfortable with may change from time to time. That first couple of years I put his pictures up, took them down, up, down, depending on whether it made me feel better or worse. Finally, they were up to stay. Consider a pet. Not everyone is a pet fan, but I've found that my dog helps immensely. It's someone to love, someone to come home to, someone happy to see me, someone that gives me a purpose...I have to come home and feed him. Besides, they're known to relieve stress. Well maybe not in the puppy stage when they're chewing up everything, but there's older ones to adopt if you don't relish that stage. Make yourself get out now and then. You may not feel interest in anything, things that interested you before seem to feel flat now. That's normal. Push yourself out of your comfort zone just a wee bit now and then. Eating out alone, going to a movie alone or church alone, all of these things are hard to do at first. You may feel you flunked at it, cried throughout, that's okay, you did it, you tried, and eventually you get a little better at it. If I waited until I had someone to do things with I'd be stuck at home a lot. Keep coming here. We've been through it and we're all going through this together. Look for joy in every day. It will be hard to find at first, but in practicing this, it will change your focus so you can embrace what IS rather than merely focusing on what ISN'T. It teaches you to live in the present and appreciate fully. You have lost your big joy in life, and all other small joys may seem insignificant in comparison, but rather than compare what used to be to what is, learn the ability to appreciate each and every small thing that comes your way...a rainbow, a phone call from a friend, unexpected money, a stranger smiling at you, whatever the small joy, embrace it. It's an art that takes practice and is life changing if you continue it. Eventually consider volunteering. It helps us when we're outward focused, it's a win/win. (((hugs))) Praying for you today. Link to comment Share on other sites More sharing options...
Members LoveNeverDies Posted January 9, 2021 Members Report Share Posted January 9, 2021 I lost my first husband Steve to GMB .In February of 2005 our daughter was born , we were both so happy and looking forward to the future . In April ,2005 he was diagnosed with GBM , they couldn’t do surgery because the tumor was in the middle of his brain. We were both in shock that this was happening, after radiation and chemotherapy he passed away 6 months later on October 21, 2005. I was completely devastated.I went though life in a fog for a long time , just trying to raise my daughter by myself. It took a lot of time and tears to be able to look back and smile at all the good memories we had together . Time does soften the pain , it also helps to talk about it to people who understand what you’re going through. I never really thought that I could love again after that. Then years later I met Terry, we had an instant connection. We had so much in common, and a deep love for each other . I lost my soulmate, on November 27 , 2020 to leukemia . Link to comment Share on other sites More sharing options...
Members BryGuy Posted January 9, 2021 Author Members Report Share Posted January 9, 2021 Thank you Kay Link to comment Share on other sites More sharing options...
Members BryGuy Posted January 9, 2021 Author Members Report Share Posted January 9, 2021 Hi Debs, Agata’s tumor was also in her thalamus and then a satellite tumor started. I appreciate your thoughtful reply. Link to comment Share on other sites More sharing options...
Members Roxeanne Posted January 9, 2021 Members Report Share Posted January 9, 2021 38 minutes ago, LoveNeverDies said: I lost my first husband Steve to GMB .In February of 2005 our daughter was born , we were both so happy and looking forward to the future . In April ,2005 he was diagnosed with GBM , they couldn’t do surgery because the tumor was in the middle of his brain. We were both in shock that this was happening, after radiation and chemotherapy he passed away 6 months later on October 21, 2005. I was completely devastated.I went though life in a fog for a long time , just trying to raise my daughter by myself. It took a lot of time and tears to be able to look back and smile at all the good memories we had together . Time does soften the pain , it also helps to talk about it to people who understand what you’re going through. I never really thought that I could love again after that. Then years later I met Terry, we had an instant connection. We had so much in common, and a deep love for each other . I lost my soulmate, on November 27 , 2020 to leukemia . I am so sorry love that you had to go through this nightmare twice... Sometimes think that you had the love of two wonderful men... Link to comment Share on other sites More sharing options...
Members LoveNeverDies Posted January 9, 2021 Members Report Share Posted January 9, 2021 @BryGuy I’m so sorry you lost your wife to that horrible disease, but I’m glad you found this forum. People here have been very supportive, we understand the pain and loneliness of losing someone we loved . I hope you come back and write . ((Hugs)) Link to comment Share on other sites More sharing options...
Members LoveNeverDies Posted January 9, 2021 Members Report Share Posted January 9, 2021 25 minutes ago, Roxeanne said: Sometimes think that you had the love of two wonderful men... Thank you Roxanne, I do feel blessed that I had them . And if I could do it all over again, I would. They were worth it . Link to comment Share on other sites More sharing options...
Members Roxeanne Posted January 9, 2021 Members Report Share Posted January 9, 2021 15 minutes ago, LoveNeverDies said: Thank you Roxanne, I do feel blessed that I had them . And if I could do it all over again, I would. They were worth it . I am sure of this...'cos if i could i would do it all over again too...with my love Giorgio! Link to comment Share on other sites More sharing options...
Members foreverhis Posted January 10, 2021 Members Report Share Posted January 10, 2021 8 hours ago, LoveNeverDies said: And if I could do it all over again, I would. They were worth it . I often say that even knowing I'd be where I am now, I'd still jump in heart first and give my husband everything because he was worth it. That's one thing that makes losing him so much harder. They (whoever "they" are) say something like "the deeper the love, the worse the pain" when grieving the loss of a soulmate. I'd have to say that's true. 13 hours ago, BryGuy said: I hear it only gets different, not really better? This is a tough one to answer because we're all so different. "Better" isn't a word I like much anymore, but in this context, I guess I'd answer that over 2-1/2 years my grief is different and it has gotten better. Mostly I mean that I'm better at coping and I've started to re-engage with the world more. I'm able to remember and see all of our 35 years, the wonderful, the mundane, and the horrible. For the first year, all could see were his last painful, difficult months. I am able to talk to friends and family while we share happy memories and am slowly, so slowly it seems, strengthening old bonds and forging new ones with people who love and care about us and now me. The best thing I can say to you right now is that our grief doesn't stay the same. For me (and I think most others), the edges soften and we incorporate it into the whole of our new lives, rather than having it crush us under its weight. I no longer feel that every smile and laugh, every good moment, is a betrayal of his memory. And yes, that is better. Link to comment Share on other sites More sharing options...
Members Gail 8588 Posted January 10, 2021 Members Report Share Posted January 10, 2021 Like foreverhis, I can state that I do feel better now, than I did the first 3 years following my love's death. I actually have feelings again, which is a big improvement. Of course I would much rather still have my life with him, but I am no longer a zombie wondering why I am still here consuming the world's scarce resources when there is no point to my existence. I am participating in life. It feels much better. Keep putting one foot in front of the other. You will eventually find you no longer feel so lost. Hopefully your path will not be as long as mine. Gail Link to comment Share on other sites More sharing options...
Moderators KayC Posted January 11, 2021 Moderators Report Share Posted January 11, 2021 My BIL of 50 years passed 3 1/2 months ago, stomach cancer. My sister sold his business (she's disabled) to a young couple maybe 40s, and now she just died of pancreatic cancer. They both went so fast. I hope her husband opens the business when he's up to it, I think it could be very therapeutic for him as the townspeople would be very supportive of him in his loss. Link to comment Share on other sites More sharing options...
Members BryGuy Posted January 11, 2021 Author Members Report Share Posted January 11, 2021 Thank you everybody! I certainly don’t feel so alone now. As I read your stories, it brings a flood of emotions. I’m terrified to think about years, but realize we all have our own pace of recovery. I hope to sell our house in Poland and move backup the US. I don’t speak Polish and we’re in total lock down, so alone all the time, so your kindness is even more appreciated. I’m so grateful to have had Agata in my life, but never imagined how empty life would be without her. It is a very strange feeling to just exist and have no purpose. Agata and I talked a lot and she wants me to find happiness. She gave me the most amazing birthday card a year and a half ago where she expressed her love for me in the most incredibly emotional way. I think she knew it would be her last opportunity. I read it often and will eventually frame it. I visit her grave weekly and give her all the updates. Was always a bit scared of cemeteries before coming to Poland, but going is such a huge part of the culture. It always brings tears, but in a strange way I feel cleansed to have talked to her and be so close. Link to comment Share on other sites More sharing options...
Members Maria_PI Posted January 11, 2021 Members Report Share Posted January 11, 2021 @BryGuy I admire your resilience and spirit! Reading your story, I can't even imagine what it would be to lose your soulmate while in lock-down and isolation in a country that you don't speak the language! I am glad you found this forum and hope that it will give you some comfort in knowing you are not alone in this journey. Link to comment Share on other sites More sharing options...
Moderators KayC Posted January 11, 2021 Moderators Report Share Posted January 11, 2021 I agree, I'd be terrified if I couldn't communicate with those around me! You are amazingly positive and trying to proceed with what is best, I wish you the best with it. That's what I love about this place, we may be all over the world but we can connect on a deep level, it so helps to have this support! Link to comment Share on other sites More sharing options...
Members Sparky1 Posted January 11, 2021 Members Report Share Posted January 11, 2021 4 hours ago, BryGuy said: It is a very strange feeling to just exist and have no purpose. Wow, you put words to what I've been feeling. I have very low motivation, the future is so cold, lonely, and bleak. My wife was the reason I lived for. Link to comment Share on other sites More sharing options...
Moderators KayC Posted January 12, 2021 Moderators Report Share Posted January 12, 2021 It took me years to find purpose again! Link to comment Share on other sites More sharing options...
Members BryGuy Posted January 13, 2021 Author Members Report Share Posted January 13, 2021 Being alone is difficult, but the challenging part is trying to find a psychotherapist and psychiatrist that speaks good enough English. The psychiatrist gave me Xanax for anxiety and in 30 days when I wanted to stop I had very severe withdrawal symptoms, so had to go on Valium to taper off. I eventually stopped, but still had a week in what I call the darkness. It was terrifying. I cannot take antidepressants and he kept insisting and changing them, but they made me feel worse and I truly was a walking zombie. Now I take nothing and deal with Agata’s loss drug free. I know that antidepressants help many people, but just not me. My first psychotherapist spoke English really well and we connected, but she went on maternity leave. I have tried a few others, but they spend half the session looking for words on google, so I leave feeling worse. That is why I came here. Thank you for your support, it is greatly appreciated. Link to comment Share on other sites More sharing options...
Moderators KayC Posted January 13, 2021 Moderators Report Share Posted January 13, 2021 I don't take antidepressants but have had lifelong GAD so am on a very mild, low dose Buspirone (Buspar), it's in a class of it's own and doesn't alter the brain, just takes a bit of the edge of so I can better cope. Itt's been years since I've had an anxiety attack now. I also walk 2-3 times a day and that helps, and take SAMe which is natural, something our body makes that some of us need more of. My puppy helps too, animals can be very de-stressing. I'm glad you're here. I'm sorry your psychotherapist left, I hope she'll be back. Link to comment Share on other sites More sharing options...
Members RainyPNW Posted January 14, 2021 Members Report Share Posted January 14, 2021 On 1/9/2021 at 9:35 AM, LoveNeverDies said: I lost my first husband Steve to GMB .In February of 2005 our daughter was born , we were both so happy and looking forward to the future . In April ,2005 he was diagnosed with GBM , they couldn’t do surgery because the tumor was in the middle of his brain. We were both in shock that this was happening, after radiation and chemotherapy he passed away 6 months later on October 21, 2005. I was completely devastated.I went though life in a fog for a long time , just trying to raise my daughter by myself. It took a lot of time and tears to be able to look back and smile at all the good memories we had together . Time does soften the pain , it also helps to talk about it to people who understand what you’re going through. I never really thought that I could love again after that. Then years later I met Terry, we had an instant connection. We had so much in common, and a deep love for each other . I lost my soulmate, on November 27 , 2020 to leukemia . Thank you so much for sharing your beautiful story. It gives me comfort and encouragement going through this difficult journey. Link to comment Share on other sites More sharing options...
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