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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.

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So sorry. We are not alone, we have God and all these people that take a little of their time to listen and share with us. You have a big family around you. Maybe we haven't seen each other, but we need someone to share these moments.
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Thanks, friends, for your messages of support. All I can say is that it takes a caregiver to understand a caregiver! I don't know if any of you feel similarly but it was always impossible for me to read about caregivers' loved ones' deaths on this site. I suppose it gave me a horrible sense of foreboding. Now that I'm the one posting all I can say is that I appreciate your support so much.
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Dear AKA, I hope you are catching up with some rest, and that each day you can accept what happened, and that you used all the insight you had at the time, many times over, to see that she would get what she needed.

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.
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AKA, you did the best you could do. I agree that it sounds like her kidneys failed and it was her time to cross over into her next life. I know the regrets you are feeling. When my father died I faced so many shouldas and couldas. I felt so much regret. But ultimately I realized that it was his time and not about what I should have or could have done. I am sorry to read of your mother passing, and know you have great concern about what is going to happen now. We become caregivers and after it is over, we're in this place of being nothing anymore. I have a feeling that many good things are waiting for you. You'll see them as time goes on and the grief gets less. ((((AKAlicious))))
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ive even came to peace with the mistakes i made before i understood dementia. your just not born knowing about brain disease. what ive learned wont be wasted tho. i have a 89 year old aunt who needs the same patience and tlc.
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..
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AKA, I'm sorry about your mom. Please don't blame yourself too much. I know as caregivers, we have gotten good at using our guts to know that something's wrong - based on their unusual behaviors or lack of activity, etc.... When my mom died last year, I regretted a lot of things. I felt bad about a lot of things. But you know what, I knew that at least I was there for her the whole way to the end, despite me and father's constant arguing. I, think we all feel as if we should do more but in reality, we did the best that we can, with the limited knowledge that we have. {{{HUGS}}}
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AKA I'm so sorry to her about Mom's passing.. You did your best. That's all us caregivers can do.
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AKA I am very sorry for your loss. Stop beating yourself up over it. You did all you could and what you felt was right.
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Thanks captain. I believe I did the same--made the last bit as nice as possible. But it's recent so the loss is hard right now. I'm sorry for your loss. Sigh. We do the best we can, right...
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it takes time. your mothers kidneys may have been junk. your best intentions arent going to make junk kidneys work. guilt is present from the time our parents need their GD freezer defrosted till the point of cheynne stokes breathing and death. guilt aint helping and isnt changing a dam thing. i miss my mother but i cant reverse 50 years of organ damage from diabetes. shes dead. i made her last year or so as nice as possible. its all one can do.
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