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Terrible guilt after mom's death


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Good morning,

This is my first time posting on this group. I am badly looking for others to speak with. My sweet mom died on Nov. 4, and I'm feeling terrible, particularly around the last several days of her life. Sorry if this is long. My mom was 91, intellectually vibrant and was living independently, with lots of support, until just recently. We were extremely close. I live on the East Coast, and she on the West Coast, but due to my office going remote during the pandemic, I was able to work from her apartment and live with her for weeks at a time, for a total of six months this year.  Her biggest issue, we thought, was arthritis pain, so I put a lot of effort into getting her on a good regimen with proper medication, PT, arranging for groceries, meals to be delivered when not there, and so on. I was determined to help her continue to live independently in a wonderful senior complex, where she had even started a writing group. I do have a sister who lives 20 minutes from my mom, but she and my mom have had a more tumultuous relationship. My sister was going through a divorce, in the middle of a rocky new relationship with a heavy drinker, and starting a new job, and came over but I was the main one keeping up on things day to day.

In September and early October, my mom was hospitalized twice, with sudden weakness and intense pain. Once doctors said she had a likely urinary-tract infection, and the second time they said she had a rheumatoid arthritis flair. Finally in late October, she was hospitalized for a third time and doctors finally did more scans and found that she had a fairly unusual cancer, of unknown origin, that had spread to her liver and bones. To say we were shocked is an understatement. I also felt terrible because I had gone to many doctors appointments with her and could think back to comments she'd made, like not having an appetite, that doctors played down and that I should have pressed on.

She was very science oriented, and once she had the diagnosis, she was keen on speaking an oncologist to know more about her cancer and just see if there was any sort of treatment options that she could handle. (No one, including her, was picturing anything aggressive, but cancer treatment has advanced greatly and it was worth checking out to see if there was anything that might make her feel better and possibly give her more time) I consulted with an expert in her exact cancer at a top cancer institute in San Diego and found that he'd had some decent success treating advanced cancer with immunotherapy, which is well tolerated in elderly people.  We made an appt for a consultation.

Before we had a chance, however, my mom again grew very weak and had stomach pain. I called paramedics who took her to a nearby hospital. They admitted her and said she had two infections- UTI & pancreatitis, plus high calcium. Over the next four days, they treated her, while I camped out in the hospital by her bed. At first my mom was getting better, even joking a bit with doctors. Then, the third day, she began suddenly deteriorating to the point she was semi-conscious, moaning, and unable to swallow food. This nurses and doctors could not give an answer of what the acute problem was, though one mentioned UTI. This misery went on for two days, and the palliative doctors came in and said she looked like she was actively dying. An oncologist remarked that her calcium levels were still high and be began to treat her with an IV medicine for that, though he said it would not work for 24-48 hours if it did work The next day, however, she was even worse and it was at that point that my sister and I decided to put her on comfort care. She died early the next morning.

 But this is the part that really haunts me. This week, I got her hospital medical records and read all of them. I can see that early on, an ER doctor recommended treating her high calcium with the exact same drug, a bisphosphonate, that the doctor treated her with at the end - but that it was never done until days later. They cite "hypercalcemia" as a cause for her decline at end - while the other two infections had improved. I have since read a lot about this condition and was horrified to see that it was known to cause the exact stuff we saw at the end - moaning, an abdominal condition called "ilius" and delirium.

I have questions for the hospital as to why they didn't treat this at the start, but I am really angry at myself. I could have delved into what high calcium meant and I should have followed up to see what they were doing about it. I was in the hospital all day every day!  I think I just assumed they were taking care of things, and I didn't know at the time that this was a potentially big deal. I can recall one day the nurse giving me a positive report about her numbers, and feeling really good. She then remarked that her calcium was still high, but that overall she was doing better. Why didn't I stop in that moment and ask questions? If I had, my mom might have gotten that medicine earlier and she might have had a chance or at least not this miserable end. I was literally there every day all day.

To make matters worse, I shared what I learned from the medical records with my sister, with whom I never got along with that well, in part because I didn't like how she treated our mom - terrible temper and says awful things when angry. (My sister has also expressed some guilt, over not being more involved with my mom's care, but I have tried to make her feel better because I know what it's like to second guess yourself.) She is not showing me that same mercy. At first when I told her about these records, she was upset at hospital, but now it seems like as she sees I am beating myself up, she has piled on a bit, saying I "took this all on" and that had I included her more, perhaps she would have asked about the calcium. (There was literally nothing preventing her from spending more time at the hospital or following up on this and she was at the ER with me that first night and hear the same three issues raised by doctors as I did.

The whole thing has me so torn up. I feel like I let my mom down and caused her suffering, and I'm not sure what to do. And I feel like I shared this with someone who is cruel. It is just the worst feeling. Sorry this is so long.

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I am so sorry for the loss of your mom and your letdown of the medical community, all too common.  :(  My sister would be here today had the doctor admitted her to the hospital for her pneumonia.  I fought for her and lost.  I feel I let her down but I know I did my best advocacy.  Remember, feelings are not facts.  You were there for her and fought for her and she well knows it.  I hope you give yourself the credit you deserve...the energy you're feeling beating yourself up, try to channel it into honoring her in some way.  It may take time to get there.

Your mom sounds like an amazing person!  My mom lived to 92 but had dementia and mental illness, her brain, alas, was not as keen as in her younger years.  Wow, to have a mom 91 and with a scientific mind!  How special!  I am sorry for all she went through at the end, and you along with her.

Grief Process
Guilt In the Wake of a Parent's Death
Parent Loss: Continuing Their Song
Tips to Make Your Way through Grief

 

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Hi Jennifer-

First, I am so sorry for your loss. I lost my dad unexpectedly and suddenly and it is not something you can ever be prepared for; grief can be very overwhelming and scary. I dealt with a ton of guilt and one thing I learned is that guilt is a normal part of the grief process, almost universal. The what-ifs and the would haves, could haves, should haves make us feel like we can control something uncontrollable. This is very human. But just because you FEEL guilt doesn't mean that you are actually guilty of doing something wrong, as kayc said. Something related to this that I have learned through therapy is that guilt can be related to perfectionism...we feel that we should get everything right and beat ourselves up when we don't, when the truth is that we are doing the best we can, in every moment. We don't have the benefit of hindsight, and hindsight can fool us into thinking "I should have known", when is there is no we could have. From what I can tell, you were absolutely doing the best you could. Important to note that there is no but. As in, not "the best I could...BUT I should have known/done x,y,z." Just you were doing your best. You were trying to be there for your mom during a really challenging time. It sounds like it was really hard, and there were a lot of complicated things going on. Most likely, the medical team members were also doing their best. Not to downplay anything if there truly was an error, but as a former cancer RN I can say that it sounds like she had a pretty aggressive cancer (sounds like Stage IV) and probably required complex care. The point is just to say that her death is not any one person's fault or the result of one decision, but of many many different decisions, made by people who were trying to do the right thing. I hope this helps. I spent a lot of time beating myself up for things I didn't do/say/know, but I now realize I WAS doing the best I could, as an imperfect human, and more importantly that my dad has forgiven me for anything I feel I did "wrong". I'm sure your mom would forgive you too :)

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Hi @eavand @kayc- thank you so much for your caring and wise responses. I can't tell you how much they help, and I'm sorry for what you both went through with your loved ones too. The idea of trying to make sense out of something uncontrollable resonates with me -it's like I'm wracking my brain looking for a way that this could have been prevented. And yes, it was stage 4, which is really important to keep in mind. My husband keeps reminding me that she was elderly and just had a really awful cancer that got her.  I really appreciate the feedback. I think just airing this and getting different perspectives will help me broaden my view and see this more clearly. Thanks again!

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