It has been a difficult but relatively brief time (about 2 years) caring for her. I'm having all the usual symptoms of grief--deep, deep pain, sadness, anger, etc. So I know I'm not unusual, but it's so hard anyway. Mostly, I feel really angry at myself. I feel like I should have pushed her doctors harder to figure out what was going on with her. In retrospect, I suspect she had unidentified pulmonary edema and heart issues, but it may have been some sort of unknown, unidentified allergic reaction that did it because she blew up like a balloon in the 5 minutes from 911 call to death. I've spoken to her doctors and none of them have been able to add any more insight to her death. I hate not knowing. So in short, I'll say that what I've learned from this is that when you know there's something going on, don't wait for the next appointment and hope that that doctor will figure it out. Push, push, push! Insist on the tests, the exams, the appointments. I wish I had been more pushy. She was 77 and wanted to live and I feel like her death is my fault--that she could have lived longer if I had approached her care with more urgency. And I feel so completely alone. (My siblings have their own families, were never involved in her care, and don't like me at all). I'm also not sure where or how I'm going to live since I'm unemployed. So it's basically a storm of sadness and panic right now. Planning on taking a few weeks to mourn and then re-asses. This site and everyone on it have been my saving grace for the past year, though. So thank you everyone for all your support. Caregivers are a special group of people and it takes one to understand one. I appreciate all of you.
I cry with you over the guilt, in empathy. I too learned to use my gut and my observations to notice small changes, but found when I tried to communicate those small changes to MDs or health personnel, either we would get all lost in all the details that evolved as I tried to communicate them, or they would brush me off and say, "don't worry, we're handling it." When it came to my brother's needs over many years, I could practice fighting back and often was able to communicate in the end, but when it came to care for my two dying dogs, ten years apart - I found myself so terrified of the miscommunications, and full of guilt afterwards at the small places I had missed, and felt that if I had caught them in time, the outcome might have been different. It's a sad feeling that complicates the loss. Took me years to get beyond it, and by now I just regret the pieces I might have done better and know that I'm very sorry.
But I am sure you will put one foot in front of the other, and do the steps needed at this point. And I hope that like others here know so well, that you will trust that you gave so many good things, made her time easier and better, more relaxed and happier, and that is a priceless gift.
mom loves me. she found my hat in another county the other day and somehow arranged for it to be delivered back to my table. she always was pretty smucking smart. lol..