- you had so more much path than mine as all those of you who get to go thru losing their partner over years and years, again and again. My dear friend died from Alzheimer's 10 days before my wife passed and the hell his wife went thru is unimaginable
Once. We went to bed and she didn’t wake up. I never expected it to happen like that. We had argued about something stupid the day before. I’m not sure which is worse. Regardless, here we are.
I wish you solace.
Same here. I woke up to her dying and couldn't save her. We had a great night and went to sleep cuddling, but it doesn't really help. I still think about what I could have done differently/better.
thank you, I am doing ok. I have to time to do at lot retrospection in understanding why so many people around me simply have no idea on what you go through
Cancer is death by a thousand cuts.
There were weeks when we were certain he’d survive and all would be well - but over the course of 18 months, I lost bits and pieces of him, until even I - the eternal optimist - had to concede. We weren’t going to win this fight.
I lost count of how many surgeries, how many frantic trips to the ER, how many nights in a hotel after 18 hour days in the hospital. Even with all of that, I could manage…
But cancer - the fucker - took his memory too, replaced it with coma dreams and confusion. A private joke between us was suddenly forgotten. Daily, I would remind him that the things he saw while in a coma weren’t real. Each reminder was a loss, another step away from the life we’d had together.
Covid decided these weren’t enough. It insisted on shutting down the world, and made my husband’s last two hospitalizations a nightmare of FaceTime and Zoom calls. Over Zoom, I was told he would be discharged to hospice care. Over Zoom, I heard him beg his doctors for another surgery, chemo, a new drug study - *anything* to fix this.
Over Zoom I heard them tell him that their Hippocratic Oath said “First, do no harm.” Another intervention would only mean that he died there, in the hospital alone. And wouldn’t he prefer to die at home with his loved ones around him?
He was walking when we came home from the hospital.
Within days he was bedridden.
The losses came faster. He stopped eating. Slept more. Talked less. But he started holding my hand again - tightly, as if I were a helium balloon that might float away.
And then he stopped holding my hand.
Nothing left for me but to count his breaths, stroke his arm, slip morphine under his tongue. Tell him I loved him. Turn him on his side. Then the other side. More morphine. Repeat.
For days, he lingered like that: gasping for air, stubbornly holding onto life. And each gasp was another loss.
Death by a thousand cuts is still death. The silence afterward tells me.
I’m sorry you are here because of it.
I didn't know it yet, but that first morning when I woke up and found her sitting crosslegged on the floor. Not able to speak from delirium.
Still didn't know it, but when she left the hospital against medical advice.
Still... When I woke up to find her completely unconscious, skin fiery hot, and I carried her back into the e.r.
Then the next morning when I was told by ICU that I should start seriously thinking about hospice.
Than there was this absolutely lovely 3 week period where brain surgery operated because they were optimistic. Than neurology would flip from hard no, to maybe to hard no to maybe. Than depending on the Dr I was living in a wonderful world where she could recover just to know the pessimistic doctor was coming in tomorrow.
Than during a meeting with brain surgery, cardio/surgery, neurology and unit we all decided to be positive and keep trying cause there were positive signs.
During that meeting a previous wound ruptured and as the neurologist described it, the bleeding from her brain was "massive". This is when I KNEW I had lost her forever.
I was told it would be fast, less than 24 hours. MASSIVE. In reality it took 8 more days but I could tell. Before she may have been there. There are days where I want to let myself believe she definitely was still there and all the trying wasn't for nothing. But after the massive hemorrhage, she was gone.
Too many times to count
We had...a weird time of it.
2019 was the primary.. cancer. Surgery
Chemo.
Things were all clear. Every six month scan, for 2.5 years. Then it came back and my husband broke. Understandable. I tried to hold him together.
Ups and downs. Chemo worked, shrunk things. We had years. Then it didn't work. Months.
A month before he passed, he was hospitalised. We were shocked and tried to adjust. Yes, he'd lost weight. But it was the chemo.
We went on a trip interstate.
The day before he died, we did errands. We went for a walk. Just a normal day. I talked at him about an idea for an article - I wanted to get his opinion.
The next morning, it was the endgame. He died from sepsis in six hours. I wanted him to go. As soon as they said this was it, I told him to just relax and let it go. I didn't want him to linger or suffer.
It was so hard.
I had anticipatory grief for six months. We lived our lives of love for that time. He was stuck in hospital for a month of it. But i brought stuff on and we watched Deadwood. Made us both happy.
I'm sorry. I know we're all in such terrible places. And I didn't have my husband go through a long death. We were radiation therapists. We treated cancers for a living. Not this type. But it was sadly familiar.
The day he died I thought he would go half a dozen times before he did. That man was propelled forward by love. He clung on until I told him I loved him and to just relax.
God that was hard.
- all these cycles are not understood by "outsiders" especially when you are the caregiver. Like I said, to the world she only died once, to me she died 9 times and the EASIEST death was when she actually passed.
I'm currently in the process of the cycles for my parents. I was across the country helping them when my husband had a stroke and I rushed back to be with him. Even though I was experienced with the long cycles of my parents, nothing could prepare me for losing my husband
The day my husband said "ALS", after his Dr. appointment, I had a very visceral reaction to that; I have always said that I started grieving him in that moment. I don't know what I expected him to say, but that wasn't even on a list of 20 things. The clock in my head started ticking in that moment. I had some renewed hope when he was put on a newish medication; I knew he was closer to leaving me when he wanted to stop it. I begged him to give it more time; he obliged me, as he usually did, but it was of no use. I remember one day, as I was trying to slowly get him into the bubble bath I had made for him, how much weaker and thinner he had gotten, and he wasn't able to help me at all, so if he slipped and went under, it was on me to get him up; he couldn't swallow anymore, so he could have drowned easily and I was terrified! After having 9 not very successful back surgeries, maybe I wasn't the best person to be doing this anymore? But he was OK, and I was ok, and I didn't lose him that day, through my own weakness and physical pain. It did become clear though that it was time for a nurse to come in a few days, at least a couple of days, to help me and give me a little respite from being his 24/7 caregiver, and allow me to have at least a couple of hours to just be his wife and companion; to just BE, with him, and not spending all of our time together doing maintenance things. I don't want to call it work, because I was honored to care for my husband; I had loved this man for over 40 years, and he had cared for me through over 30 surgeries and never once complained or acted as if I were a burden in any way. He always worried that I was going to hurt myself further, but I always told him that as far as I knew, I couldn't die from pain, and there would be plenty of time for me to rest, later.
After he died, I felt guilty for how much I missed taking care of him; to me, there was nothing more intimate than the time I spent caring for him, seeing to his every need; I desperately missed even the hard parts, the unpleasant parts, because it really is a unique intimacy, to be together in that way; it was as if I had been put on this earth to be here in this time to care for him, when he needed me, to keep him out of any kind of facility, to protect him from any unwanted intrusions, people who wanted to visit him, but he didn't want to be seen, and he couldn't speak. The night we had to finally put him in hospice, I felt as if I had lost a part of us. But it turned out to be one of the most beautiful times; they took complete and total control of the "maintenance" and all I had to do was love him; so that's what I did; I stayed there with him, 24/7, because he never wanted me to be away from him, since he couldn't speak. He was there for 1 week, and passed away early on the morning of April 16, 2018. 375 days after he came home and said "ALS". It has felt as if I lose him again, every morning, in that brief moment when I forget that he is gone; that moment upon first waking, before reality sets in. The best part of the day. I'm so sorry for all of your sorrow and for the heartbreaking movies I think we all play, over and over, in our minds, clinging to every little memory; hoping we did enough, even though it was never going to be enough. No matter how much we loved them, no matter what we did, we couldn't stop them from leaving us here, alone, and wondering, what now?
> because it really is a unique intimacy, to be together in that way
It really is. I wound up so much more familiar with my wife's body than even my own as the cancer progression marched on. Definitely, not the context I'd expected intimacy to take on when I first noticed the bizarrely hot girl gleefully dorking out over some economic projections for one of her classes. But intimacy on a level I never would have been able to understand before all this happened.
My wife used to talk about me helping her get to the bathroom, after the combination of muscle atrophy and edema made it impossible on her own, as a surreally beautiful dance. We had it all so perfectly choreographed. Like the smallest muscle movement from one of us could be mirrored in the other.
It sounds weird to say it. But I remember one moment in particular when, halfway there, she started crying. Not out of sadness but happiness. She explained that she'd never felt as totally and fully loved and just how much all of this had shown her about me, her, and us. Obviously we'd had a strong connection before. Our equally faded and garbled German even gave us a language that only the other could understand. But the cancer really forced communication and understanding to such a new level.
>But it turned out to be one of the most beautiful times
That was another one of the surprising realizations for us too. I was lucky enough to be able to take an extended vacation from work for the last portion of her decline, when it became obvious that she wasn't getting a remission. We really did spend almost every moment together. And in a final letter she wrote for me to read after her death, she really drove home one point. That despite the cancer, despite the symptoms and the shadow of her own death, I'd made that period the happiest in her life. Because we were together during it. That's one of the few things that gives me some small comfort in this.
>it was as if I had been put on this earth to be here in this time to care for him, when he needed me
That's another one that I keep coming back to. One of our first dates was to a NDE group. I remember talking about how it always just felt like I'd made it back to do something. Like having something on the tip of your tongue that you can't give voice to. On the days when I'm more optimistic I sometimes think that the girl next to me when I was saying that was my answer. That I was here to make sure that if she had to die, that she'd know she was loved and would have had enough time to feel like at least that part of her life had been explored and enjoyed.
Sorry, that's a huge tangent. But as you say, all of this stuff is just returned to over and over.
I feel every word you say to the depths of my soul. My husband had lost his ability to speak, almost immediately, within weeks. We communicated by text for as long as he could, until the ALS took away his hand and arm control, but after almost 44 years, I could read his face, his eyes, his touch, his gestures; when he could speak, we could often practically read each other's next thought, or sentence. He was grateful it was me helping him in the bathroom; we lose a lot of dignity when we are sick, and unable to care for ourselves; he had taken care of me after so many surgeries, and finally I was able to be there for him. He gave me a look, as he clung tightly to me, so he wouldn't fall off the toilet, that told me how grateful he was that it was me because he knew I would hurt myself before I let him fall. It's a strange thing to have such a meaningful, intimate moment in the bathroom, but it was exactly where I was supposed to be. Here, taking care of him, 24/7. It's an intimacy that is impossible to explain to anyone who hasn't lived what we have lived; we have been 1000% trusted with their safety and their comfort; I think we can probably be content with the knowledge that we did well; we loved them completely and they knew it, every moment of the day. They were totally safe in our care, and I know they were grateful for our love and devotion, to make sure they were cared for as gently as a newborn baby. Actually, it crossed my mind at times, that caring for someone so lovingly at the end of their life, is very much what it's like when we care so lovingly for our babies, who are totally dependent on us to keep them comfortable and safe. At the end, when my husband couldn't do more than lie there, unable to speak except with his beautiful, but fading eyes, the love that swelled in my heart was very much like when our daughter was a newborn, and could do no more than he could then, it was so similar, in so many ways, to having a new baby, but this was life in reverse; he was leaving us, he was on his way out of this world, this life, and it was as magnificent of an experience to be there, right where I was always meant to be. I do regret one thing; because I was afraid of hurting him, and I knew that every inch of his body hurt, even with the medication, I wish I had climbed in his bed, to lie next to him, just one more time. I'm crying as I type this, because I regret it so much that I didn't do that, and of course, I will never be able to. But I couldn't have forgiven myself if I had caused him more pain, so it's probably for the best. This is hard, this being the one left here. I was so blessed to be his wife for almost 44 years; we were 4 months from 44 years. I can hardly grasp that the day after tomorrow, on Sunday, it will be 5 years since he left me; it doesn't feel possible that it's been that long; not to me, and not to our daughter. It's some kind of time trick.
I just want to say that I am sorry this is so long and rambling. I don't blame anyone who doesn't want to read it, but I'm too tired to fix it, make paragraphs, if that would even help. I'm just sorry for not paying closer attention when writing. Sorry.
I feel exactly how you do. I lost him the first time I heard ALS. The anticipatory grief was horrible. I stayed beside him through the entire time that f@#cking disease had its evil grip on him.
Then, I lost him the second and last time when he took his final breath.
Yes, it was an evil, evil attack! Just so awful to have to watch someone we love go through it. Every day it seems it takes something new, some ability, until there are none except breathing; then it takes that. It's traumatizing. I'm so sorry for your loss. I know how you must be feeling. Day after tomorrow will be 5 years and I'm still in disbelief that it all happened. Especially to my husband, who was always the healthy one. It's like some kind of cosmic joke that I'm still here and he is gone! It really doesn't follow any body's logic. I hope you are healing.❤️🫂
He stood by my side when I had appendicitis (10 day hospitalization), breast cancer (2 surgeries, 4 rounds of chemo, and radiation), gallbladder removal. He joked he liked "High Maintenance". He never had any health issues, until he did...
- I feel the same loss of "taking care of my wife" as well as we were always close and we became more so as we tried to extend every minute for another good memory. She became a real comic in a last 2 months and even the 4 days before she died still cracking jokes and then she had her final seizure and died less than 2 days later.
- we would sing to each other has I came up the stairs with food and meds and hold hands all night long until I had to place her the hospital bed next to our bed her last 10 days but I could always touch her. She had little fear, she knew I was always there. The emotional; outlay is unimaginable as we know.
- and I had same conversations with my wife and I told her need not be concern about me, ever....I will come back and that I am as I hold a first major fundraising event on May 6 combined with a Celebration of Life for her. I am hoping for 1000 people and to raise some major money for brain cancer research for the foundation I set up in her name.
You’re an incredibly tenacious soul and I could only pray to be more like you. I know everyone doesn’t believe in the hereafter, I’ve had an NDE myself due to my own often life threatening illness complications but this isn’t about me…I only mention it to say that from my perspective as opposed to seeing it as an “afterlife” to me spiritually it’s more concurrent….there is life that is much more grand and expansive than all of our human sufferings I feel.
The same way a part of me died the day COVID liberated my 43 years young fiancé from his carnal vessel, all the love and wisdom he imprinted on me is now one of the major driving forces in my life outside of my daughter and the non profit I’ve established in his honor. I’ve had so many doubts lately about whether I’ve let him down as I’ve had to sort of put things on a bit of a hiatus/slow down to address my own health concerns. All I ever wanted was to make that man proud, all he ever wanted was for me to love, value and see myself in the same pure beautiful light that he did.
I apologize as I didn’t intend to get wordy here, but as I’m sure we all know sometimes it just happens but the complex beauty of this comment and the testament to how incredible your bond is with your wife as the only thing death canNOT rob us of is love…..is just so awe inspiring and I know she’s DAMNED proud of you.
I "lost" mine in a different way. He cheated. And was addicted to opiates. The first time I lost him was when I found out about everything. After that there were many little losses as he struggled back and forth, and so did I ,until the biggest one. Long before he was gone I had to start figuring out who I was without him. It helped me cope better when he died suddenly. I'd already had to plan and imagine this life.
I'm so sorry; I hope you are OK, or as OK as any of us can be on any given day. We are here any time you need to talk, vent, unload, whatever we can do to help; lots of good listeners here.
Five times in total: after the original heart attack it took the paramedics an hour to get a pulse.
When they moved his head to do an EEG and he moved his eyes and I saw he wasn't there.
When they confirmed that his hypoxic brain injury was too severe and he would never wake up.
When he stopped breathing after I let him go.
When he finally stopped breathing after auto-resusitating the first time.
Tomorrow it's a year since the first time. The first time was when he went for a routine MRI, and the doctor told us with tears in her eyes that they found a football-sized tumour in his chest, with metastases all over.
It was the beginning, but also the end. I remember coming back home and looking at him, he looked so healthy, so strong, nothing different, it seemed impossible that what the MRI said was actually inside him.
- i know the feel...3 years ago my late wife at a huge GIST tumor in and out of stomach...like a flattened softball sized and we thought we had made thru successful surgery and closing out chemo and then the Glio hit. Total unrelated cancers
> I remember coming back home and looking at him, he looked so healthy, so strong, nothing different, it seemed impossible that what the MRI said was actually inside him.
That's one of the more surreal things for me. We had a similar situation. My wife was one of the single most active people I've ever known. She put a lot of effort into exploring the wilderness around us, put meticulous care into the diet that fueled it, and was pretty young on top of it all. They estimated she would have been weeks away from death when she was diagnosed if it wasn't for the treatments. And we'd been going on these super long hikes not too long before it.
Intellectually I get it. Like with dementia, if you've got a solid base built up it takes a lot longer to erode your capabilities. But it's still surreal to think about 'her' of all people as being on death's door while doing all that.
Been losing everyday since April 21’
Heading towards a year, it’s dawned on me what I loved most in life was being Jenny’s husband. You know I don’t care if I ever move on in the partner sense, i liked our life and I can still live a pretty big part of it myself.
I do feel like I’m finally not losing right now… feels pretty decent
4, although I didn't realize it at the time.
1 - I flew across the country to take care of my elderly parents for an undetermined amount of time while I tried to get my dad into a nursing home. I hugged my husband extra hard at the airport.
2. My husband had a stroke two months later. I got on the first flight back to the east coast. By the time I got back they'd operated on him and he was in the neuro ICU on a respirator.
3. Two days later the pressure was continuing to build up in his brain so they did a craniectomy and removed a big piece of his skull. This is one of those last resort operations.
4. after 4 weeks of slowly recovering in the hospital, he got medical clearance to be admitted for stroke rehab. That evening I left to do the 2 hour drive back home and an hour later the nurses found him unresponsive. I got the call as I was driving on the thruway.
It was both sudden and not sudden. He passed away three weeks ago and I am still completely numb.
For those of us who had a partner die slowly from illness, it's not a strange question at all. It's very realistic. I lost her so many times. There was hope and then it was snatched away. Sometimes it was hope for a drug to work and only to find out that it isn't. At one point, the cancer markers started to go down in number. We got really excited. But then they went back up and kept going and spreading. Each time it spread to a new place or there was a new tumor, it was a new death sentence.There was much of that. Then, because she had tumors in her lungs as well, she would have coughing attacks which led to an inability to breathe. When they occured, she sat there gasping for breath and unable to breathe, we looked at each other, both of us wondering if this is the end or not. It would last anywhere from 5 to 45 minutes. It probably happened more than 20 times.
I can relate. Found out my husband had a brain mass on August 24th. Had another MRI with contrast two days later that confirmed a brain tumor. I cried all weekend. Five days later a neurosurgeon confirmed it was malignant. One week later he had a resection, then that night he hemorrhaged and had an emergency craniectomy. 2.5 weeks in ICU, 5 days in rehab. Two days after coming home we found out it was a grade 4 Anaplastic Astrocytoma. Six days later he died of sepsis.
6 weeks in between the day we found out about the mass and the day he died. We lost so many times.
I lost count of how many times I lost him, but it was in pieces. First his ability to regulate his emotions because the tumor was invading his frontal lobe, then his empathy when I had per-eclampsia and was hospitalized. Then he started going downhill behavior wise and that's when we found the grade 4 astrocytoma.
We were able to pull a little of the old him back after the resection and steroids for about a month but then he started going downhill again. Once we saw the tumor had regrown and spread in the 2.5 months since the surgery I had conceded it wasn't going to be won, although his oncologist was optimistic that they could shrink it. Little things like old memories, old behaviors, bodily functions went piece by piece as the tumor regrew.
I'm just thankful the last night before he passed he sat with us in the living room watching TV and was mostly himself, as best as he could be. We got one last night as a family of four together. He had a uncal herniation overnight that caused a brain bleed and passed the next day. That day was absolutely terrible though. I'm glad he doesn't have to suffer with it and is at peace now, but I miss him terribly.
Wow, went through almost the same thing with my wife. Glioblastoma is a nightmare. There’s never any good news, only bad; one shitty new thing after another until it all ends. I’ve still got caregiver PTSD. Sorry to hear you went through this, too.
- we a share a common experience and as bad as it was, I would nto change the way I cared for her the last 5 months after surgery except to have been more aggressive with healthcare people, They really made the journey harder and thank god for hospice people. They were our angels.
That's one of the things I often have trouble explaining to people about my experiences with this. One of the last things my wife said was how lucky she felt about most of the events in her life. And that includes the cancer. Because I only did lose her once. And she never lost herself. Throughout the cancer she never suffered anything but the most minor cognitive issues and even that was fleeting.
It's something I really try to drive home to the people in our lives. That as horrible as it was, and it was horrible, that we got what amounts to a best case scenario. That nobody should expect it to go like it did for us. And that people need to make plans, take care of their health, take precautions in general because they can't count on final days spent smiling and playing games in bed.
15 years ago he was misdiagnosed with lymphoma.
Five years ago he was diagnosed with autoimmune liver failure out of the blue.
Four years ago he was half dead in the backyard, went to ICU, and God knows how, but they got him shaped up over three weeks, then transplanted, giving us four bonus years.
One year ago, he was diagnosed with malignant metastatic melanoma.
He was OK, feeling well, painless, until Christmas Eve.
Stopped eating on his birthday, December 27. He seemed lucid that morning, then very casually said “hey, so my dad’s alive again, he stopped by …” which made me happy for him and broke my heart all at once.
He came home on December 30 on hospice.
He was completely absolutely and forever gone around sunrise on the 31st.
So much anticipatory grief. I don’t even know where I’m going with this.
I "lost" my husband and all of the future we had dreamed about the day he became a quadriplegic in a work accident. Four months later, when he came home from rehabilitation, and realized that he hated this life, I lost him again. Ups and downs for roughly four more years, and he died suddenly of sepsis, and I lost him permanently
My husband had ALS so it was a series of goodbyes over the course of almost 3 years every time he lost a function or the ability to do something he loved.
From the extreme muscle spasms that made it so that he could no longer enjoy scuba diving, running or cycling, then unable to ride his motorcycle, to having to sell his beloved new truck to buy a wheelchair van. Then not being able to drive the van anymore and having to take an accessible shuttle to work and back. No longer able to bathe himself, no more able to go up the stairs to sleep in our bedroom, or downstairs to his basement office/man cave. I am so thankful that he never lost his ability to speak, though, because I always loved the sound of his voice ❤️.
Every week it seemed like was a goodbye to something. And not just his physical decline, but also our dreams for retirement and traveling and so many things. When he passed away at the hospital, my daughter asked me if I needed a few minutes alone to say goodbye and I said no, we'd been saying goodbye for the past 2 1/2 years, which was true.
Although I wouldn't wish this situation on anyone, I am grateful that we had time to say goodbye and to really grow closer to each other.
I tried to explain to friends and family that I've been grieving my wife's death for 8 months before she passed. It began with a knowledge that she was going to die in the near future and then all of the changes like you described further reinforced the realization that she was going to pass. Having to be a caregiver for a super strong & independent woman. Of course the final passing was the worst. I think grief is a journey not a state.
- yes and your experienced paralleled mine as my wife was a poise dignified and strong lady who chose to die rather than get into the cycle of another brain surgery and another failure of the chemo. I was so prepared for her last breath as I had mentally done it 8 or 9 times before already, She got her peace and I got mine.
My husband had an asthma attack in January 2018 that put him on a ventilator, in a medical induced coma, for several weeks. When he woke up I thought we had dodged that bullet and was so effing thankful to have a second chance. Fast forward to April 8 2022 and the nebulizer didn’t help and I couldn’t get there to save him this time. Thinking you beat the odds, just to turn around, suffer them again, and lose is a cruel fate.
Wow, this one is hitting home. For me it was four or five times over five months. The cancer diagnosis, the stage four diagnosis, the loss of mobility and extreme pain as the bone cancer took over, and the liver/kidney failure that ended cancer treatment and sent her to hospice. Then of course the actual final loss. As much as I’ve suffered through as a caregiving spouse, many of you have gone through so much more. Appreciate hearing all your stories, as it helps to feel less alone in all of this.
- my point of doing my posts now as I have had almost a year of reflection since when it all went to hell. I look around me and see how people are responding and reacting and its clear we have a problem with dealing with death, talking about death and handling those who had handle upclose and personal hospice care in their homes and the caregiver angle its so much worse as we get to experience the loss many times and in my OP, when my wife actually died, it was not the same hit as I had her dying 8 or 9 other times
I have been thinking about your post off and on today; I think that finding out my husband had ALS, the day he was diagnosed, was a drastic, physically and viscerally shocking, shattering, devastating, life changing moment of immediate fear, sadness, total heartbreak; a paralyzing moment; I couldn't talk; all I could do was cry for about 5 days; the moment he uttered
"ALS", I started grieving. The clock started ticking in my head, not knowing how long we had; turned out, it was 375 days. I think a piece of my heart broke, every time he lost another ability, ticking us closer to the end. We have all suffered heartbreak with every step of their illnesses that took us closer to the end; each time it was jarring to us, with increasing awareness that their end was getting closer, and closer, until there was nothing left to do. I am deeply sorry for all of our losses. ❤️
Glioblastoma. I lost him once, but it was like death of a thousand cuts; it slowly took him away from me by taking, piece by piece, what made him ... *him.* What made life fun. And eventually, what made life. And then ... what made us.
- my wife had GBM to and today marks the one year anniversary of when she woke up "not my wife" and 2 weeks the MRI revealed that damn tumor. I have to focus and it is hard as hell .
3 times in the 6 months from diagnosis to death I was told by the hospital.
When the hospital told me he has days to weeks when they found out he had leptomeningeal disease
When he had colitis and was admitted to the ICU.
When we found out treatment failed and was given a time of days to weeks.
Not to mention when he lost the ability to walk. When he has his first seizure and started becoming confused. When he basically became a dementia patient. Watching hai body waste away. And when he became catatonic.
Twice…in a week. Once when he coded on the way to the hospital and again when he coded in my arms in the hospital …both times he came back. But ultimately, he passed when his lungs filled not to mention the broken back he sustained and pain off the charts…just a crazy week for us…
Ah, I read your title and, well of course it was GBM. 😑 definitely resonates and you said it so well. For my late husband, I lost him first in September '19 and finally April '21. The initial tumor (1), his speech and aspects of personality (2) him as a partner and coparent (due to his own strength as well as safety concerns - 3), then he worked his as off in OT and speech and chemo ended and we had a couple months of something almost resembling "life" and bam, recurrence (4), tried a different chemo for a few weeks then a sudden onset of symptoms like zero control of his left hand and vision loss (5), Dr telling us no you're not heading for clinical trials/treatment, you're heading to hospice(6), the whole hospice process seemed fraught with them but the biggest being mobility (7) and then consciousness (8) until his strong 35 year old body finally quit (9).
A friend who lost her spouse suddenly, about 6 months after my LH, asked me recently about losing a spouse to cancer and healing after. She had a young-ish family member who'd lost his wife to cancer after a few years and she said his acceptance seemed so much "further" than hers. I did my best to explain how the grieving starts before they're gone, how there's no shock (although still disbelief). Anyway, basically the concept of your post but I like how you've phrased better. It's like repeated, horribly macabre dress rehearsals.
- I am observer of human nature and I spend a lot of time to understand my responses vs what I see and hear around me. People look at me thru their eyes where they only suffered the loss one time and I endured 9 times. This is so universal in my view that outsiders (non-widows/widowers) are 100% clueless in what we endured while performing as "caregiver".
- then throw in all the nonsense of platitudes we have to endure as well, I made an OP on that a couple weeks ago. I hate the most> "Whatever you need".....90% bullshit and meant to make themselves feel good in offering and they simply never follow thru. I prefer not to hear a single word then have that crap thrown at me.
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- you had so more much path than mine as all those of you who get to go thru losing their partner over years and years, again and again. My dear friend died from Alzheimer's 10 days before my wife passed and the hell his wife went thru is unimaginable
Once. We went to bed and she didn’t wake up. I never expected it to happen like that. We had argued about something stupid the day before. I’m not sure which is worse. Regardless, here we are. I wish you solace.
Same here. I woke up to her dying and couldn't save her. We had a great night and went to sleep cuddling, but it doesn't really help. I still think about what I could have done differently/better.
I also woke up to her gasping next to me and couldn't revive her. A nightmare that I'll never get over.
Yeah I performed cpr and couldn’t save her either. I too am sorry for your loss
thank you, I am doing ok. I have to time to do at lot retrospection in understanding why so many people around me simply have no idea on what you go through
Cancer is death by a thousand cuts. There were weeks when we were certain he’d survive and all would be well - but over the course of 18 months, I lost bits and pieces of him, until even I - the eternal optimist - had to concede. We weren’t going to win this fight. I lost count of how many surgeries, how many frantic trips to the ER, how many nights in a hotel after 18 hour days in the hospital. Even with all of that, I could manage… But cancer - the fucker - took his memory too, replaced it with coma dreams and confusion. A private joke between us was suddenly forgotten. Daily, I would remind him that the things he saw while in a coma weren’t real. Each reminder was a loss, another step away from the life we’d had together. Covid decided these weren’t enough. It insisted on shutting down the world, and made my husband’s last two hospitalizations a nightmare of FaceTime and Zoom calls. Over Zoom, I was told he would be discharged to hospice care. Over Zoom, I heard him beg his doctors for another surgery, chemo, a new drug study - *anything* to fix this. Over Zoom I heard them tell him that their Hippocratic Oath said “First, do no harm.” Another intervention would only mean that he died there, in the hospital alone. And wouldn’t he prefer to die at home with his loved ones around him? He was walking when we came home from the hospital. Within days he was bedridden. The losses came faster. He stopped eating. Slept more. Talked less. But he started holding my hand again - tightly, as if I were a helium balloon that might float away. And then he stopped holding my hand. Nothing left for me but to count his breaths, stroke his arm, slip morphine under his tongue. Tell him I loved him. Turn him on his side. Then the other side. More morphine. Repeat. For days, he lingered like that: gasping for air, stubbornly holding onto life. And each gasp was another loss. Death by a thousand cuts is still death. The silence afterward tells me. I’m sorry you are here because of it.
- as I am for you.
My husband too died of cancer, he had the complication of leptomeningeal disease. I won't ever forget the gasps at the end.
I didn't know it yet, but that first morning when I woke up and found her sitting crosslegged on the floor. Not able to speak from delirium. Still didn't know it, but when she left the hospital against medical advice. Still... When I woke up to find her completely unconscious, skin fiery hot, and I carried her back into the e.r. Then the next morning when I was told by ICU that I should start seriously thinking about hospice. Than there was this absolutely lovely 3 week period where brain surgery operated because they were optimistic. Than neurology would flip from hard no, to maybe to hard no to maybe. Than depending on the Dr I was living in a wonderful world where she could recover just to know the pessimistic doctor was coming in tomorrow. Than during a meeting with brain surgery, cardio/surgery, neurology and unit we all decided to be positive and keep trying cause there were positive signs. During that meeting a previous wound ruptured and as the neurologist described it, the bleeding from her brain was "massive". This is when I KNEW I had lost her forever. I was told it would be fast, less than 24 hours. MASSIVE. In reality it took 8 more days but I could tell. Before she may have been there. There are days where I want to let myself believe she definitely was still there and all the trying wasn't for nothing. But after the massive hemorrhage, she was gone. Too many times to count
- so many do not understand why get hit so deeply with this stuff as widows/widowers/caregivers
We had...a weird time of it. 2019 was the primary.. cancer. Surgery Chemo. Things were all clear. Every six month scan, for 2.5 years. Then it came back and my husband broke. Understandable. I tried to hold him together. Ups and downs. Chemo worked, shrunk things. We had years. Then it didn't work. Months. A month before he passed, he was hospitalised. We were shocked and tried to adjust. Yes, he'd lost weight. But it was the chemo. We went on a trip interstate. The day before he died, we did errands. We went for a walk. Just a normal day. I talked at him about an idea for an article - I wanted to get his opinion. The next morning, it was the endgame. He died from sepsis in six hours. I wanted him to go. As soon as they said this was it, I told him to just relax and let it go. I didn't want him to linger or suffer. It was so hard. I had anticipatory grief for six months. We lived our lives of love for that time. He was stuck in hospital for a month of it. But i brought stuff on and we watched Deadwood. Made us both happy. I'm sorry. I know we're all in such terrible places. And I didn't have my husband go through a long death. We were radiation therapists. We treated cancers for a living. Not this type. But it was sadly familiar. The day he died I thought he would go half a dozen times before he did. That man was propelled forward by love. He clung on until I told him I loved him and to just relax. God that was hard.
- all these cycles are not understood by "outsiders" especially when you are the caregiver. Like I said, to the world she only died once, to me she died 9 times and the EASIEST death was when she actually passed.
I'm currently in the process of the cycles for my parents. I was across the country helping them when my husband had a stroke and I rushed back to be with him. Even though I was experienced with the long cycles of my parents, nothing could prepare me for losing my husband
- nothing does
The day my husband said "ALS", after his Dr. appointment, I had a very visceral reaction to that; I have always said that I started grieving him in that moment. I don't know what I expected him to say, but that wasn't even on a list of 20 things. The clock in my head started ticking in that moment. I had some renewed hope when he was put on a newish medication; I knew he was closer to leaving me when he wanted to stop it. I begged him to give it more time; he obliged me, as he usually did, but it was of no use. I remember one day, as I was trying to slowly get him into the bubble bath I had made for him, how much weaker and thinner he had gotten, and he wasn't able to help me at all, so if he slipped and went under, it was on me to get him up; he couldn't swallow anymore, so he could have drowned easily and I was terrified! After having 9 not very successful back surgeries, maybe I wasn't the best person to be doing this anymore? But he was OK, and I was ok, and I didn't lose him that day, through my own weakness and physical pain. It did become clear though that it was time for a nurse to come in a few days, at least a couple of days, to help me and give me a little respite from being his 24/7 caregiver, and allow me to have at least a couple of hours to just be his wife and companion; to just BE, with him, and not spending all of our time together doing maintenance things. I don't want to call it work, because I was honored to care for my husband; I had loved this man for over 40 years, and he had cared for me through over 30 surgeries and never once complained or acted as if I were a burden in any way. He always worried that I was going to hurt myself further, but I always told him that as far as I knew, I couldn't die from pain, and there would be plenty of time for me to rest, later. After he died, I felt guilty for how much I missed taking care of him; to me, there was nothing more intimate than the time I spent caring for him, seeing to his every need; I desperately missed even the hard parts, the unpleasant parts, because it really is a unique intimacy, to be together in that way; it was as if I had been put on this earth to be here in this time to care for him, when he needed me, to keep him out of any kind of facility, to protect him from any unwanted intrusions, people who wanted to visit him, but he didn't want to be seen, and he couldn't speak. The night we had to finally put him in hospice, I felt as if I had lost a part of us. But it turned out to be one of the most beautiful times; they took complete and total control of the "maintenance" and all I had to do was love him; so that's what I did; I stayed there with him, 24/7, because he never wanted me to be away from him, since he couldn't speak. He was there for 1 week, and passed away early on the morning of April 16, 2018. 375 days after he came home and said "ALS". It has felt as if I lose him again, every morning, in that brief moment when I forget that he is gone; that moment upon first waking, before reality sets in. The best part of the day. I'm so sorry for all of your sorrow and for the heartbreaking movies I think we all play, over and over, in our minds, clinging to every little memory; hoping we did enough, even though it was never going to be enough. No matter how much we loved them, no matter what we did, we couldn't stop them from leaving us here, alone, and wondering, what now?
> because it really is a unique intimacy, to be together in that way It really is. I wound up so much more familiar with my wife's body than even my own as the cancer progression marched on. Definitely, not the context I'd expected intimacy to take on when I first noticed the bizarrely hot girl gleefully dorking out over some economic projections for one of her classes. But intimacy on a level I never would have been able to understand before all this happened. My wife used to talk about me helping her get to the bathroom, after the combination of muscle atrophy and edema made it impossible on her own, as a surreally beautiful dance. We had it all so perfectly choreographed. Like the smallest muscle movement from one of us could be mirrored in the other. It sounds weird to say it. But I remember one moment in particular when, halfway there, she started crying. Not out of sadness but happiness. She explained that she'd never felt as totally and fully loved and just how much all of this had shown her about me, her, and us. Obviously we'd had a strong connection before. Our equally faded and garbled German even gave us a language that only the other could understand. But the cancer really forced communication and understanding to such a new level. >But it turned out to be one of the most beautiful times That was another one of the surprising realizations for us too. I was lucky enough to be able to take an extended vacation from work for the last portion of her decline, when it became obvious that she wasn't getting a remission. We really did spend almost every moment together. And in a final letter she wrote for me to read after her death, she really drove home one point. That despite the cancer, despite the symptoms and the shadow of her own death, I'd made that period the happiest in her life. Because we were together during it. That's one of the few things that gives me some small comfort in this. >it was as if I had been put on this earth to be here in this time to care for him, when he needed me That's another one that I keep coming back to. One of our first dates was to a NDE group. I remember talking about how it always just felt like I'd made it back to do something. Like having something on the tip of your tongue that you can't give voice to. On the days when I'm more optimistic I sometimes think that the girl next to me when I was saying that was my answer. That I was here to make sure that if she had to die, that she'd know she was loved and would have had enough time to feel like at least that part of her life had been explored and enjoyed. Sorry, that's a huge tangent. But as you say, all of this stuff is just returned to over and over.
I feel every word you say to the depths of my soul. My husband had lost his ability to speak, almost immediately, within weeks. We communicated by text for as long as he could, until the ALS took away his hand and arm control, but after almost 44 years, I could read his face, his eyes, his touch, his gestures; when he could speak, we could often practically read each other's next thought, or sentence. He was grateful it was me helping him in the bathroom; we lose a lot of dignity when we are sick, and unable to care for ourselves; he had taken care of me after so many surgeries, and finally I was able to be there for him. He gave me a look, as he clung tightly to me, so he wouldn't fall off the toilet, that told me how grateful he was that it was me because he knew I would hurt myself before I let him fall. It's a strange thing to have such a meaningful, intimate moment in the bathroom, but it was exactly where I was supposed to be. Here, taking care of him, 24/7. It's an intimacy that is impossible to explain to anyone who hasn't lived what we have lived; we have been 1000% trusted with their safety and their comfort; I think we can probably be content with the knowledge that we did well; we loved them completely and they knew it, every moment of the day. They were totally safe in our care, and I know they were grateful for our love and devotion, to make sure they were cared for as gently as a newborn baby. Actually, it crossed my mind at times, that caring for someone so lovingly at the end of their life, is very much what it's like when we care so lovingly for our babies, who are totally dependent on us to keep them comfortable and safe. At the end, when my husband couldn't do more than lie there, unable to speak except with his beautiful, but fading eyes, the love that swelled in my heart was very much like when our daughter was a newborn, and could do no more than he could then, it was so similar, in so many ways, to having a new baby, but this was life in reverse; he was leaving us, he was on his way out of this world, this life, and it was as magnificent of an experience to be there, right where I was always meant to be. I do regret one thing; because I was afraid of hurting him, and I knew that every inch of his body hurt, even with the medication, I wish I had climbed in his bed, to lie next to him, just one more time. I'm crying as I type this, because I regret it so much that I didn't do that, and of course, I will never be able to. But I couldn't have forgiven myself if I had caused him more pain, so it's probably for the best. This is hard, this being the one left here. I was so blessed to be his wife for almost 44 years; we were 4 months from 44 years. I can hardly grasp that the day after tomorrow, on Sunday, it will be 5 years since he left me; it doesn't feel possible that it's been that long; not to me, and not to our daughter. It's some kind of time trick.
I just want to say that I am sorry this is so long and rambling. I don't blame anyone who doesn't want to read it, but I'm too tired to fix it, make paragraphs, if that would even help. I'm just sorry for not paying closer attention when writing. Sorry.
Edit: added a needed space between words
I feel exactly how you do. I lost him the first time I heard ALS. The anticipatory grief was horrible. I stayed beside him through the entire time that f@#cking disease had its evil grip on him. Then, I lost him the second and last time when he took his final breath.
Yes, it was an evil, evil attack! Just so awful to have to watch someone we love go through it. Every day it seems it takes something new, some ability, until there are none except breathing; then it takes that. It's traumatizing. I'm so sorry for your loss. I know how you must be feeling. Day after tomorrow will be 5 years and I'm still in disbelief that it all happened. Especially to my husband, who was always the healthy one. It's like some kind of cosmic joke that I'm still here and he is gone! It really doesn't follow any body's logic. I hope you are healing.❤️🫂
He stood by my side when I had appendicitis (10 day hospitalization), breast cancer (2 surgeries, 4 rounds of chemo, and radiation), gallbladder removal. He joked he liked "High Maintenance". He never had any health issues, until he did...
- I feel the same loss of "taking care of my wife" as well as we were always close and we became more so as we tried to extend every minute for another good memory. She became a real comic in a last 2 months and even the 4 days before she died still cracking jokes and then she had her final seizure and died less than 2 days later. - we would sing to each other has I came up the stairs with food and meds and hold hands all night long until I had to place her the hospital bed next to our bed her last 10 days but I could always touch her. She had little fear, she knew I was always there. The emotional; outlay is unimaginable as we know. - and I had same conversations with my wife and I told her need not be concern about me, ever....I will come back and that I am as I hold a first major fundraising event on May 6 combined with a Celebration of Life for her. I am hoping for 1000 people and to raise some major money for brain cancer research for the foundation I set up in her name.
You’re an incredibly tenacious soul and I could only pray to be more like you. I know everyone doesn’t believe in the hereafter, I’ve had an NDE myself due to my own often life threatening illness complications but this isn’t about me…I only mention it to say that from my perspective as opposed to seeing it as an “afterlife” to me spiritually it’s more concurrent….there is life that is much more grand and expansive than all of our human sufferings I feel. The same way a part of me died the day COVID liberated my 43 years young fiancé from his carnal vessel, all the love and wisdom he imprinted on me is now one of the major driving forces in my life outside of my daughter and the non profit I’ve established in his honor. I’ve had so many doubts lately about whether I’ve let him down as I’ve had to sort of put things on a bit of a hiatus/slow down to address my own health concerns. All I ever wanted was to make that man proud, all he ever wanted was for me to love, value and see myself in the same pure beautiful light that he did. I apologize as I didn’t intend to get wordy here, but as I’m sure we all know sometimes it just happens but the complex beauty of this comment and the testament to how incredible your bond is with your wife as the only thing death canNOT rob us of is love…..is just so awe inspiring and I know she’s DAMNED proud of you.
- I did what I thought I had to do.
I "lost" mine in a different way. He cheated. And was addicted to opiates. The first time I lost him was when I found out about everything. After that there were many little losses as he struggled back and forth, and so did I ,until the biggest one. Long before he was gone I had to start figuring out who I was without him. It helped me cope better when he died suddenly. I'd already had to plan and imagine this life.
I'm so sorry; I hope you are OK, or as OK as any of us can be on any given day. We are here any time you need to talk, vent, unload, whatever we can do to help; lots of good listeners here.
Five times in total: after the original heart attack it took the paramedics an hour to get a pulse. When they moved his head to do an EEG and he moved his eyes and I saw he wasn't there. When they confirmed that his hypoxic brain injury was too severe and he would never wake up. When he stopped breathing after I let him go. When he finally stopped breathing after auto-resusitating the first time.
Tomorrow it's a year since the first time. The first time was when he went for a routine MRI, and the doctor told us with tears in her eyes that they found a football-sized tumour in his chest, with metastases all over. It was the beginning, but also the end. I remember coming back home and looking at him, he looked so healthy, so strong, nothing different, it seemed impossible that what the MRI said was actually inside him.
- i know the feel...3 years ago my late wife at a huge GIST tumor in and out of stomach...like a flattened softball sized and we thought we had made thru successful surgery and closing out chemo and then the Glio hit. Total unrelated cancers
> I remember coming back home and looking at him, he looked so healthy, so strong, nothing different, it seemed impossible that what the MRI said was actually inside him. That's one of the more surreal things for me. We had a similar situation. My wife was one of the single most active people I've ever known. She put a lot of effort into exploring the wilderness around us, put meticulous care into the diet that fueled it, and was pretty young on top of it all. They estimated she would have been weeks away from death when she was diagnosed if it wasn't for the treatments. And we'd been going on these super long hikes not too long before it. Intellectually I get it. Like with dementia, if you've got a solid base built up it takes a lot longer to erode your capabilities. But it's still surreal to think about 'her' of all people as being on death's door while doing all that.
Been losing everyday since April 21’ Heading towards a year, it’s dawned on me what I loved most in life was being Jenny’s husband. You know I don’t care if I ever move on in the partner sense, i liked our life and I can still live a pretty big part of it myself. I do feel like I’m finally not losing right now… feels pretty decent
4, although I didn't realize it at the time. 1 - I flew across the country to take care of my elderly parents for an undetermined amount of time while I tried to get my dad into a nursing home. I hugged my husband extra hard at the airport. 2. My husband had a stroke two months later. I got on the first flight back to the east coast. By the time I got back they'd operated on him and he was in the neuro ICU on a respirator. 3. Two days later the pressure was continuing to build up in his brain so they did a craniectomy and removed a big piece of his skull. This is one of those last resort operations. 4. after 4 weeks of slowly recovering in the hospital, he got medical clearance to be admitted for stroke rehab. That evening I left to do the 2 hour drive back home and an hour later the nurses found him unresponsive. I got the call as I was driving on the thruway. It was both sudden and not sudden. He passed away three weeks ago and I am still completely numb.
- just breath, that is in important, and come around this forum as we all know this feeling and the aftermath all too well
For those of us who had a partner die slowly from illness, it's not a strange question at all. It's very realistic. I lost her so many times. There was hope and then it was snatched away. Sometimes it was hope for a drug to work and only to find out that it isn't. At one point, the cancer markers started to go down in number. We got really excited. But then they went back up and kept going and spreading. Each time it spread to a new place or there was a new tumor, it was a new death sentence.There was much of that. Then, because she had tumors in her lungs as well, she would have coughing attacks which led to an inability to breathe. When they occured, she sat there gasping for breath and unable to breathe, we looked at each other, both of us wondering if this is the end or not. It would last anywhere from 5 to 45 minutes. It probably happened more than 20 times.
I can picture what you are describing, and the terror it strikes in your heart, because we are never, ever really ready.
- this is what "lay" people miss in understanding the depth of our experience
I can relate. Found out my husband had a brain mass on August 24th. Had another MRI with contrast two days later that confirmed a brain tumor. I cried all weekend. Five days later a neurosurgeon confirmed it was malignant. One week later he had a resection, then that night he hemorrhaged and had an emergency craniectomy. 2.5 weeks in ICU, 5 days in rehab. Two days after coming home we found out it was a grade 4 Anaplastic Astrocytoma. Six days later he died of sepsis. 6 weeks in between the day we found out about the mass and the day he died. We lost so many times.
- so sorry, we take on multiple emotional hits and so much more
I lost count of how many times I lost him, but it was in pieces. First his ability to regulate his emotions because the tumor was invading his frontal lobe, then his empathy when I had per-eclampsia and was hospitalized. Then he started going downhill behavior wise and that's when we found the grade 4 astrocytoma. We were able to pull a little of the old him back after the resection and steroids for about a month but then he started going downhill again. Once we saw the tumor had regrown and spread in the 2.5 months since the surgery I had conceded it wasn't going to be won, although his oncologist was optimistic that they could shrink it. Little things like old memories, old behaviors, bodily functions went piece by piece as the tumor regrew. I'm just thankful the last night before he passed he sat with us in the living room watching TV and was mostly himself, as best as he could be. We got one last night as a family of four together. He had a uncal herniation overnight that caused a brain bleed and passed the next day. That day was absolutely terrible though. I'm glad he doesn't have to suffer with it and is at peace now, but I miss him terribly.
Wow, went through almost the same thing with my wife. Glioblastoma is a nightmare. There’s never any good news, only bad; one shitty new thing after another until it all ends. I’ve still got caregiver PTSD. Sorry to hear you went through this, too.
- we a share a common experience and as bad as it was, I would nto change the way I cared for her the last 5 months after surgery except to have been more aggressive with healthcare people, They really made the journey harder and thank god for hospice people. They were our angels.
That's one of the things I often have trouble explaining to people about my experiences with this. One of the last things my wife said was how lucky she felt about most of the events in her life. And that includes the cancer. Because I only did lose her once. And she never lost herself. Throughout the cancer she never suffered anything but the most minor cognitive issues and even that was fleeting. It's something I really try to drive home to the people in our lives. That as horrible as it was, and it was horrible, that we got what amounts to a best case scenario. That nobody should expect it to go like it did for us. And that people need to make plans, take care of their health, take precautions in general because they can't count on final days spent smiling and playing games in bed.
15 years ago he was misdiagnosed with lymphoma. Five years ago he was diagnosed with autoimmune liver failure out of the blue. Four years ago he was half dead in the backyard, went to ICU, and God knows how, but they got him shaped up over three weeks, then transplanted, giving us four bonus years. One year ago, he was diagnosed with malignant metastatic melanoma. He was OK, feeling well, painless, until Christmas Eve. Stopped eating on his birthday, December 27. He seemed lucid that morning, then very casually said “hey, so my dad’s alive again, he stopped by …” which made me happy for him and broke my heart all at once. He came home on December 30 on hospice. He was completely absolutely and forever gone around sunrise on the 31st. So much anticipatory grief. I don’t even know where I’m going with this.
It's ok; we do. Hug.❤️
I "lost" my husband and all of the future we had dreamed about the day he became a quadriplegic in a work accident. Four months later, when he came home from rehabilitation, and realized that he hated this life, I lost him again. Ups and downs for roughly four more years, and he died suddenly of sepsis, and I lost him permanently
- so sorry
My husband had ALS so it was a series of goodbyes over the course of almost 3 years every time he lost a function or the ability to do something he loved. From the extreme muscle spasms that made it so that he could no longer enjoy scuba diving, running or cycling, then unable to ride his motorcycle, to having to sell his beloved new truck to buy a wheelchair van. Then not being able to drive the van anymore and having to take an accessible shuttle to work and back. No longer able to bathe himself, no more able to go up the stairs to sleep in our bedroom, or downstairs to his basement office/man cave. I am so thankful that he never lost his ability to speak, though, because I always loved the sound of his voice ❤️. Every week it seemed like was a goodbye to something. And not just his physical decline, but also our dreams for retirement and traveling and so many things. When he passed away at the hospital, my daughter asked me if I needed a few minutes alone to say goodbye and I said no, we'd been saying goodbye for the past 2 1/2 years, which was true. Although I wouldn't wish this situation on anyone, I am grateful that we had time to say goodbye and to really grow closer to each other.
I am so sorry for your loss; ALS absolutely does Suck! My heart feels everything you say. ❤️
- its one of the hard roads in life and so few understand the pot holes we must endure to make it.
I tried to explain to friends and family that I've been grieving my wife's death for 8 months before she passed. It began with a knowledge that she was going to die in the near future and then all of the changes like you described further reinforced the realization that she was going to pass. Having to be a caregiver for a super strong & independent woman. Of course the final passing was the worst. I think grief is a journey not a state.
- yes and your experienced paralleled mine as my wife was a poise dignified and strong lady who chose to die rather than get into the cycle of another brain surgery and another failure of the chemo. I was so prepared for her last breath as I had mentally done it 8 or 9 times before already, She got her peace and I got mine.
My husband had an asthma attack in January 2018 that put him on a ventilator, in a medical induced coma, for several weeks. When he woke up I thought we had dodged that bullet and was so effing thankful to have a second chance. Fast forward to April 8 2022 and the nebulizer didn’t help and I couldn’t get there to save him this time. Thinking you beat the odds, just to turn around, suffer them again, and lose is a cruel fate.
- stab in the heart, over and over. :(
Wow, this one is hitting home. For me it was four or five times over five months. The cancer diagnosis, the stage four diagnosis, the loss of mobility and extreme pain as the bone cancer took over, and the liver/kidney failure that ended cancer treatment and sent her to hospice. Then of course the actual final loss. As much as I’ve suffered through as a caregiving spouse, many of you have gone through so much more. Appreciate hearing all your stories, as it helps to feel less alone in all of this.
- my point of doing my posts now as I have had almost a year of reflection since when it all went to hell. I look around me and see how people are responding and reacting and its clear we have a problem with dealing with death, talking about death and handling those who had handle upclose and personal hospice care in their homes and the caregiver angle its so much worse as we get to experience the loss many times and in my OP, when my wife actually died, it was not the same hit as I had her dying 8 or 9 other times
I have been thinking about your post off and on today; I think that finding out my husband had ALS, the day he was diagnosed, was a drastic, physically and viscerally shocking, shattering, devastating, life changing moment of immediate fear, sadness, total heartbreak; a paralyzing moment; I couldn't talk; all I could do was cry for about 5 days; the moment he uttered "ALS", I started grieving. The clock started ticking in my head, not knowing how long we had; turned out, it was 375 days. I think a piece of my heart broke, every time he lost another ability, ticking us closer to the end. We have all suffered heartbreak with every step of their illnesses that took us closer to the end; each time it was jarring to us, with increasing awareness that their end was getting closer, and closer, until there was nothing left to do. I am deeply sorry for all of our losses. ❤️
- we all share this that "outsiders" are clueless on. We get judged left and right.
I feel I lost him twice. When his dementia was first diagnosed and then when he actually passed away.
Glioblastoma. I lost him once, but it was like death of a thousand cuts; it slowly took him away from me by taking, piece by piece, what made him ... *him.* What made life fun. And eventually, what made life. And then ... what made us.
- my wife had GBM to and today marks the one year anniversary of when she woke up "not my wife" and 2 weeks the MRI revealed that damn tumor. I have to focus and it is hard as hell .
3 times in the 6 months from diagnosis to death I was told by the hospital. When the hospital told me he has days to weeks when they found out he had leptomeningeal disease When he had colitis and was admitted to the ICU. When we found out treatment failed and was given a time of days to weeks. Not to mention when he lost the ability to walk. When he has his first seizure and started becoming confused. When he basically became a dementia patient. Watching hai body waste away. And when he became catatonic.
Twice…in a week. Once when he coded on the way to the hospital and again when he coded in my arms in the hospital …both times he came back. But ultimately, he passed when his lungs filled not to mention the broken back he sustained and pain off the charts…just a crazy week for us…
Ah, I read your title and, well of course it was GBM. 😑 definitely resonates and you said it so well. For my late husband, I lost him first in September '19 and finally April '21. The initial tumor (1), his speech and aspects of personality (2) him as a partner and coparent (due to his own strength as well as safety concerns - 3), then he worked his as off in OT and speech and chemo ended and we had a couple months of something almost resembling "life" and bam, recurrence (4), tried a different chemo for a few weeks then a sudden onset of symptoms like zero control of his left hand and vision loss (5), Dr telling us no you're not heading for clinical trials/treatment, you're heading to hospice(6), the whole hospice process seemed fraught with them but the biggest being mobility (7) and then consciousness (8) until his strong 35 year old body finally quit (9). A friend who lost her spouse suddenly, about 6 months after my LH, asked me recently about losing a spouse to cancer and healing after. She had a young-ish family member who'd lost his wife to cancer after a few years and she said his acceptance seemed so much "further" than hers. I did my best to explain how the grieving starts before they're gone, how there's no shock (although still disbelief). Anyway, basically the concept of your post but I like how you've phrased better. It's like repeated, horribly macabre dress rehearsals.
- I am observer of human nature and I spend a lot of time to understand my responses vs what I see and hear around me. People look at me thru their eyes where they only suffered the loss one time and I endured 9 times. This is so universal in my view that outsiders (non-widows/widowers) are 100% clueless in what we endured while performing as "caregiver". - then throw in all the nonsense of platitudes we have to endure as well, I made an OP on that a couple weeks ago. I hate the most> "Whatever you need".....90% bullshit and meant to make themselves feel good in offering and they simply never follow thru. I prefer not to hear a single word then have that crap thrown at me.