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Loss and Grief in Caregiving

Loss & Grief | Last Active: Nov 2, 2016 | Replies (38)

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@mj0123

I had been looking at this sight and debating whether to post my feelings, here it goes. I lost my mother my everything 7 months ago. It has been the most devastating loss that has ever happened to me and my family. Everything just happened so fast, she was put on oxygen in January and was scheduled to see a lung specialist not til March. I knew something wasnt right , February 7th she wasnt feeling good with her oxygen levels dropping so we took her to the ER. They took xray,ct scans,blood work and just sent her home. Doctors weren't to conserned said she had some fibrosis to keep her on oxygen. As weeks passed by she gradually was getting worse, so February 25 we took her back to the same hospital decided to keep her for testing of course no answers til i requested a meeting with all the specialist that had seen her. Again because it was a weekend no answers til Monday morning. when we finally got to talk to them (again) told us she was being sent home and would have to come once a week for blood transfusions because her blood levels were low and she would also have to go for breathing treatments. When they said she was going home her eyes lit up and smiled. Of course we were excited our selves, a couple of days passed by and the floor Dr came in and said theres nothing else we can do, we both looked at each other and my mom asked me what did he mean. DR just walked out with no explanation. I followed him out and i asked him when do we take my mom home. Just looked at me and said your mother has two days to live. I just fell to the floor the Dr turned around like it was just another day. Didnt have no reaction, i know they probably see that dailey but i was alone with no family members around. Just devastating to call my dad and brothers. I didnt even get to ask why, what happened that everything has changed. We all finally got together with hospital councilor and she brought the lung Dr. In to explain that her lungs were hardening. I just cant have closure twice we were told she was fine and coming home. WE were never given options like possible lung transplants, which are very successful. im sure there is a waiting list for transplants but i would of offerd one of mine. She went in there not feeling 100 percent with oxygen on 4 or 5, i noticed once they pumped her with massive morphine and antibiotics she went down extremely and oxygen changed to a huge machine at 40% plus. So much morphine she couldn't even go to the bathroom or sit up. With such devastation we didnt do an autopsy and was cremated. Which is a big regret. I wanted to get her records from the first time we took her and compare but hospital wont release her records. Think we have to go through some process. Anyway this whole nighmare has been devastating and i dont know what to do. Do i try and dig or just leave it alone. I cry dailey and is affecting my life just thinking of all the what ifs and why twice they told us things were fine. I remember her telling me i felt ok til i got here, she did have slight pneumonia back in October 2015 and since then she kinda wasn't her self. MY life has changed forever

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Replies to "I had been looking at this sight and debating whether to post my feelings, here it..."

Hello @mj0123 It is nice to e-meet you here. I am sorry for your loss and the pain you must be experiencing. I am glad you posted here on Connect. I am Scott. I was my wife's caregiver fro 14+ years during her battle with brain cancer. She just passed away in July and I understand your sense of loss and the void, which much be in your life. Connect is a good place to share your thoughts and feelings. I have found it a 'safe' place to do that. I have found folks do not judge, they just welcome your sharing since we all know sharing is a big part of the process we must face as we struggle in the life that is now unfolding before us.

As to your Mom's medical records I ask if you or another family member had power of attorney for her medical needs? If so getting a copy of her records, etc. should not be too hard. It may be time consuming and you may have to request them from multiple places -- each doctor, the hospital, etc., but you should be able to get them. As to advising whether it is a good thing to do I think that will have to be up to you. Tough decision I am sure for you. The records may help you understand what went on, but in that they won't really change the outcome, it could be difficult and challenging things to read. Gauge your own strength.

If you are at all like me, the loss and grief journey you have embarked upon will be just as challenging as the medical journey you just experienced with your mom. I am so sorry for your loss.

I find writing about my feelings does help. If you are lucky enough to have a friend or family member who listens well, I suggest, based on my experience, it can help.

Try to stay active. I hope you stick around Connect and please feel free to ask any questions, etc.

I send you peace and strength!

@mj0123, I am very sorry to hear about the loss of your dear mother. Having lost my mom several years back, I can understand some of your pain. I hear your frustration, too. I replied to let you to know that my heart hurts with you, and my prayer will include you. On Thursday, we will bury my own dear mother-in-law. May they both rest in peace, and be blessed with eternal life. Amen.
Rosemary

Thank you Rosemary, i'm sorry for your loss. MY mother was my best friend, my everything, i just feel so alone without her. I have a wonderful supportive husband and family but i feel like im cheating them by not being myself. Crying on a dailey basis, ive pulled away from them a little. I try so hard but i have a part of my heart missing. Thank you for your response may you find peace with your loss and May God Bless your family