I was my mothers carer for 11 years after she had a brain haemorrhage. She improved so much after she had a shunt fitted and we were very close.
I feel like my decision played a role in her death. I partly blame myself for her death.
A week before she died I noticed her feet and legs had started to swell up and her finger tips had turned a dark blue. Her eyes had started to go jaundice and she was short of breath and confused. Because of covid restrictions we couldn’t see a doctor so my dad described the symptoms over the phone. The doctor prescribed a chest infection and gave her antibiotics and water tablets for the swelling.
Over that weekend she got worse and on the Monday morning my dad wanted to call the doctor but the surgery didn’t open until 8.30am and we would have to wait for about 3 hours to speak with anyone.
I insisted we phone for an ambulance and my dad didn’t want to. He didn’t want my mother going into hospital during covid. Eventually I persuaded him and we argued because he wanted to wait to see what the local doctor could do. I didn’t think she would last the day if we waited any longer.
When the ambulance came they were very quiet and didn’t really tell us what was wrong. After a few tests and some oxygen they took my mother to hospital. We were not allowed to go with her because of covid protocols.
Later that morning we got a call from a doctor at the emergency department who told us my mother had “partial heart failure” but had tested negative for covid.
We were told she would be placed onto an acute ward for treatment. We got another call the next day to say my mother would not keep her oxygen mask on. My dad asked if he could sit with her to encourage her to keep it on but the doctor would not allow it.
I spoke to my mother on the phone and she said to me “Sarah I’m dying” - it was all I could do to keep from crying down the phone but I kept it together and told her to keep the oxygen mask on when told to and she would be fine and would be able to come home. She sounded brighter so I was hopeful she would get better.
The following day in the afternoon my dad got a call to say my mother would be placed on end of life care. We were shocked about this decision and didn’t understand why? The nurse told my dad he could come up to say his goodbyes for just 15 minutes. I was not allowed to because the policy was just one close relative can say goodbye due to their covid protocols.
This is when we found out she had been put into a covid ward without our knowledge. We asked if she could come home but they wouldn’t let her leave. When my dad arrived he said she was sitting up and waved to him. He couldn’t understand why she was going onto end of life as she seemed much brighter. We were told that her oxygen was at 77% and needed to be at least 88% but everytime they stopped oxygen therapy her levels kept dropping.
She died the next morning in the early hours all alone. We have since found out that this hospital has a habit of putting non covid patients into covid wards. They also had scored her on what they said was a clinical frailty score that deems how much treatment a patient gets. This was introduced during covid so I believe if not for lockdown restrictions the outcome may have been different.
My mother was only 74 & I feel if I had waited for my dad to speak to the local doctor instead of insisting for an ambulance she may still be here today?
I feel guilty that I didn’t fight for her when she was in the hospital and didn’t listen to my dad and wait to speak with the local doctor at the surgery. I feel in part to blame for what happened to my mother and I cannot get over it.
I feel she was essentially euthanised. She was denied treatment for heart failure. I feel hospital just gave up on her after less than 48 hours of treatment. If not for me the outcome may have been different.
2. The hospital may have made errors. Despite what another poster said, It is absolute abject nonsense that they put her in a COVID unit because they get extra money. That is a tripe from Qanon and disinformation. Sometimes Covid shows in repeat tests after an initial negative. Also, she may have moved to that unit because it was set up for more intensive oxygen/breathing therapy. An oxygen level of 77 is veryyyyyyy low.
3. You did all you could and you did everything you could since your father refused earlier hospital care.
4.Blue fingers are a sign of lack of oxygenation. A doctor call or telehealth visit would not have her very helpful. So the ambulance call was correct.
5. Please do not doubt yourself. You did all you could. You loved and cared for your mother. You did not add or cause her death. Condolences and hugs. Go easy on yourself. You did well.
I think what you're experiencing has more to do with the grieving process. You're not only grieving the loss of you mom, you are dealing with a HUGE change in your life - you are no longer taking care of her, which you say you did for 11 years. Regardless of how you feel about caregiving, once that part of your life is over, it leaves quite a void.
I'm going to try and put some things in perspective for you, and I hope it helps. You said you took care of mom for 11 years. Were you the type of caregiver who called 911 for every little thing? Or did you call the doctor and try to work through it with as minimal medical intervention as you could? Judging from your post, I'd say it was the latter. So something near the end triggered your "this is a medical emergency" response and you acted quite properly and called for the professionals. If you had come here before you called EMS and described mom's symptoms in a post and then asked "what should I do?", I would expect the overwhelming response would have been "you need to call 911 and get mom to the ER."
Blue fingertips, leg and feet swelling, shortness of breath and confusion are the hallmarks of CHF. That's what my mom died of, so I get what you were seeing. The jaundiced eyes - well, I'm not a medical person, but that's usually indicative of liver problems. Each of those things is dangerous enough on their own - together...
It's tough for us as caregivers, we try our very best to keep our loved ones at home, alive, and comfortable as best we can, and when that starts to slide away, we call on the professionals to help intervene. But sometimes, there's nothing the professionals can do, either. Likely your dad is of the generation that felt you go to the hospital to die, and that's probably where his reluctance came from to bring mom. But, sweetie, if you had left her home, she likely would have died there. There comes a point when there's no more fight left in the body. I'm sorry it happened so quickly for your mom, for your sake. We kept my mom at home on hospice at the end, and it was not an easy thing to watch, but at least as I was watching I was able to come to terms with the fact that her body was shutting down, and there wasn't anything I or anyone could do to stop it.
You gave your mom 11 years of loving care; you were able to keep her in her home with your dad...a small miracle, considering her brain hemorrhage. You need to focus your attention on that. No one could doubt your love for her - not the medical people, not family, not your dad, and especially not your mom. If she could talk to you right now, I'm sure she would tell you that you took wonderful care of her and she appreciates so much what you did, and you are in no way responsible for her passing.
(((hugs))) and peace.