Welcome, Dez, and I can understand your feelings. My husband died at age 78 of acute myeloid leukemia 6 months after his diagnosis, but the ravages of a predecessor disease (polycythemia) and the meds used to manage it had taken their toll. He was really going downhill the last 2 years- weaker, able to eat less, losing weight. Regardless, we still got in some wonderful trips in 2014 and 2015- just had to be careful and not wear him out. He used to hike the Appalachian trail but by the time he died he was down to 117 lbs. and I think he was feeling worse than he admitted to most of the time.
He died in November, 2016 and it was a relief, really. I'd have the old, healthy Ron back in a minute but the Ron who died peacefully at home under hospice care was ready to leave this earth. I've done far better than I ever expected since then and I, too, feel a little guilty. I think part of it is being freed from being a caregiver- it was a privilege to take care of a man who had taken care of so many others- but now all I have to worry about is keeping the bills paid and the lawn mowed. I enjoy cooking for myself, my body is in better shape than ever because I've extended my gym workouts a little (and I'm almost 65) and I have some wonderful travel planned. I keep expecting Ron's death to unexpectedly hit me like the proverbial ton of bricks and it hasn't, although I did sense my alone-ness more this year at family Christmas gatherings.
We're all different.
So, we're all different. What's wonderful is that this group is non-judgmental. No one gets told to snap out of it when it's a major task to just get out of bed and get dressed, and no one gets criticized when they find bright spots in the new life they're beginning to build.
Thank you for your support. It's so nice to see others are feeling the same way.
Thank you, Dez, for articulating what so many of us go through -- relief that it is over. For those who lost a spouse suddenly, this is something they don't experience. But whether you have been caregiver through a long illness, a short one, or if you are like me and were in the limbo of ICU, not knowing if your husband is even still in his body or if his brain is so damaged that his spirit has left already, a lot of us have already started grieving beforehand, and at least when they are gone, we finally KNOW.
I'm sure I'm not the only one who has felt guilt at this relief. It is hard to deal with.
Thanks for your insight. I am thankful that my husband didn't have to be admitted to ICU... that was another prayer, that he die quickly and peacefully at home, and my prayers were answered.
Bob had dementia for a long time and I was his caretaker. When he died I felt relief that he wasn’t suffering anymore and I felt grief at the same time. At times I feel guilt that I survived him, and it is difficult to deal with. Peace to all.
Hello everyone, My husband Chris passed away on the 15th of October from oesophageal cancer. He was diagnosed in May 2016 when he was 46. He did a short round of chemotherapy but as it was palliative and made him feel like a zombie he decided to stop. He decided he would cure himself with nutrition and lifestyle changes and he did not have any medical tests or intervention apart from blood tests until three weeks before he passed away. He had abdominal swelling and it took two days for me to convince him to go to the hospital. They found his liver enormously enlarged with tumours and said he would have weeks to months. He told me he was relieved as he’d had enough. This was the first time he wasn’t talking about fighting to live. It was a indescribable evening. We went from nothing to palliative care nurses in our home everyday, multiple medications and equipment and seeing him decline physically and emotionally extremely quickly.Our kids (25, 23 and 19) all flew home and stayed so he was able to be at home with his family all together as he wished.
I have only just started to get back into activities outside the home and I’m am blindsided by the stupid things people say, or that they knew Chris and say nothing at all. I think that hurts more. I logically know people don’t know what to say but I get so frustrated I end up in tears in public in front of people that I shouldn’t care about, and then they look so uncomfortable I want to run away. A woman we know told me today in the post office that she knew Chris had passed away but was on holidays when it happened. What is that supposed to mean? No condolences, no how are you? Then tells me how great her husbands business is going and they are planning a lovely holiday together overseas!, I can’t understand how people can be so insensitive. I don’t know anyone who I can relate to or knows how I’m feeling right now (they think they do but truly have no idea). Anyway, I just needed to have a rant.
Dear Sam,I'm sorry and I know exactly how you feel because our story is very similar to yours.We even had no paliative nurses and I was his only caregiver.I am not a doctor or a nurse and I am afraid I couldn't do the best for him to relieve him.I was absolutely alone with him except for the last day when he was already in coma.When I remember those days and nights I wish I was dead too.
Please don't torture yourself with insensitive people.They believe that cancer is something that can't happen to them,that we are guilty for being ill .I tried to stay strong but I also broke in tears in publik few times.I just couldn't stop it.I remember I was told "so sorry ,he was a handsome man"(?),"no more holidays for you" etc.People stay away from us because most are selfiish and don't like to feel uncomfortable or do something for us.Even when they say the right words they don't actually mean it so don't expect support and care from them.It;s been 7 months for me and the fog starts to lift up but what I see clearly is not good.I lost my soulmate and the life I loved.I am only here to support our children.So far I haven't found a reason to live except the children and I only hope time to ease my pain no more no less.This site is the only place I can talk freely about how I feel and it's very useful.
Hi Mareli, I am sorry you were alone so much, and I too feel I couldn't do enough to relieve Chris's pain, nausea and mental state the last weeks. The nurses came to help me adjust his medications each day but we were always playing catch up and he was never comfortable. It was hideous to see him like that and I seemed to be constantly ringing them or his doctor later each day to make adjustments. After he passed his doctor told me she was sorry it was such a hard time for us all but she was constrained by laws so was unable to give more relief to him. My dad passed away from cancer four years ago and they had him heavily sedated so he passed away after three days in hospital quite peacefully with me by his side. Chris and I both thought this would be his path too when the time came, but it was not peaceful at all. It is torturous to dwell on it so I try to think on the good times we had as much as I can. I am thankful that I was with him, and the kids were home. Thank you for replying to me. I appreciate your honesty and for sharing your feelings. It helps to know I'm not alone.
I don't know why people can't understand that "I don't even know what to say" or "There just aren't any words" is a perfectly appropriate thing to say.
I once waited in line for an hour at a wake for a friend's daughter trying to figure out what to say. When I got to the front of the line I burst into tears and said "I don't know what to say!!".
Much later, my friend said that if she's heard one more thing about "Hang in there" or "She's in a better place" she was going to scream, and what I said was exactly the right thing. We were work friends and after that we became real friends.
Thank you for your reply. I totally agree. I have had two people say 'I don't know what to say' and one of them was my sister. I was completely comfortable with that and know that is was a genuine gesture from those who want to help you but don't know how. It was so much better than 'You can sleep in the middle of the bed now'. That gem was from my mum, but I chose to ignore it because I know she is grieving too! I'm pleased you have had a friendship grow. Nice to hear something positive. Thank you.
My mum's gem was "No woman cries for a man but you.You are such a fool".She is divorced and don't believe in love and family.
Sam,my father died 7 years ago from the same cancer that killed my husband in June.
I was a caregiver for him,77,and for my father in law,72,who died a week after Dad.
I was extremely stressed out and tired.Whoever may know that I'm going through all this so soon with the man of my life at such a young age of 52 .Life sucks.
That was a very unkind thing for your Mum to say. I pity her for not having love in her life.