My Mom passed away. Did I do the right thing?

[LovingMom1]

Hi everyone. Please excuse this long post – but I am in desperate need of very honest advice and opinions, as I am uncertain as to whether I did the right thing for my beautiful Mom, who passed away recently. I need to tell the whole story, as I feel I may have caused my mother to pass – and the guilt I feel is overwhelming and I honestly don't think I cannot continue with my own life, having contributed to my Mother's demise.

My 70 yo Mom (who lived with me – and I nursed FT for 7 years) had a series of significant medical issues, including but not limited to systemic lupus, non-cystic fibrosis bronchiectasis (24/7 02), RV heart failure, significant weight loss (88 pounds), advanced steroid induced osteoporosis, multi pathological Fx. She was a very unwell lady – but always had a positive outlook. In the days prior to her passing, she felt extremely nauseated, very breathless, would go 16-17 hours before urinating, did not eat and was unable to walk due to feeling so weak. She also suffered from debilitating pain (despite using heavy meds). She had recently been referred to a palliative care service (in the home) – but we were still waiting to hear from them. In any case, we had regular visits from her GP, dietitians, physiotherapists and we also had access to CN and RNs if/when required. In any case – I looked after Mom full time and happily quit work in order to do so. I promised her I would not put her into a nursing home. We were doing OK – and we got by each day just being together. We were best friends.

On the day prior to my Mom's passing, she had not been to the toilet for 17 hours. I took her to the ED to have a in & out catheter to drain her urine – but a bladder scan showed she only had 6 oz of fluid in her bladder - so they didn't do it and said that she would "go" when she was ready. She complained of nausea to the Dr, who gave her Ondanzetron (antiemetic). Mom immediately fell asleep and I felt (at the time) it was because she was completely exhausted from feeling nauseated all of the time and also because she hadn't been sleeping very well (sometimes not at all). I thought it was simply her body feeling relieved. She was also taking Fentanyl for chronic pain, but I was assured that one Ondanzetron would not cause any Seratonin issues / poor interactions with her pain medications. We never really got to the bottom of WHY Mom was nauseated all the time. Her kidney function bloods were good – no UTI, etc. Actually – her bloodwork was quite good (for her).

We were taken home. Mom was still very drowsy and disorientated. But once I had her sitting up on her couch and had well positioned AND she had a cup of tea – she perked up really well. She later went to the toilet (huge wee – yay) and then she asked for some dinner (wow!! Yay). I really thought that we had solved the problem with this great medication – Ondanzetron. After dinner, Mom became drowsy again and confused. I again thought it was because she had had such a big day at the hospital.

I took her to bed that night very early. She was very unsteady on her feet during the stand transfer (more than usual) – and this was the reason I put her to bed early. It was a difficult process, but we got there. She was in a right lateral position, with her head slightly elevated and her legs slightly elevated with pillows to protect her heals from pressure. She was on a pressure relieving mattress.

Ordinarily, I would turn Mom every 3 hours (from right lateral - to supine - and then back into right lateral again later). This worked well. She had very poor skin integrity, already had a stage 4 pressure ulcer (courtesy of a hospital stay), and due to her poor nutritional status and heavy requirement for steroids, I felt regular turning was important. She would usually rouse a little to help me with the re-positioning – and after about 1-2 minutes, we'd be finished and she go back to sleep. Ordinarily, she wouldn't even remember being turned.

But on THAT night it was different. After I put Mom to bed, she was staring off into the distance. I asked her if she could see something or someone – she said no. I asked her if something was wrong – she said no. I asked her if she was angry with me – she said no. I asked her if she was in pain – she said no. All just single words. I told her to close her eyes and that I would be sleeping right beside her if she wanted anything. I put a mattress on the floor beside her bed, so I could be close.

I checked on her an hour later – she was fine. I then checked on her 3 hours later – she looked fine. I was going to turn her then – but she looked so peaceful – and it had only been 4 hours, so I made an executive decision to leave her a little bit longer and that her sleep was more important. I got up 2 hours later to check on her. At this point, she had been in the same position for 6 hours. I really felt it was important to re-position her a little. I took the pillows out from under her legs. Turned them over, so they were nice and cool and moved her legs a little. Instead of a big roll into a supine position – I decided to just give her a small lateral nudge, to move the pressure point slightly. I didn't want to wake her. When I nudged her, she flopped almost into a prone position and seemed unconscious. This surprised me. I had never experienced that before. At that point, I felt I had no other choice but to place her into a supine position. But when I did that, she was too far down the bed, so I had to turn her laterally again, place a slide sheet underneath her, turn her supine again and shift her up the bed. When removing the slide sheet, Mom flopped over into a right lateral position. Again this had never happened before. She was clearly unconscious – and I would have thought that after 6 hours of sleep, she would rouse a little bit. As I turned her back, she became very pale and it was obvious she had passed away.

So, my question is – have any of you experienced something like this before? And to what extent do you think my actions contributed to my Mom's passing? Please be honest with me. If it was my fault - then I really need to know. Mom and I were best friends and I did everything I possibly could to do all the right things.

I appreciate any and all advice you can offer.

[calivianya, BSN, RN]

Have you ever had pt's pass away during pressure area care / re-positioning? It was during this process that she passed away. If she passed away while I was doing this, I can only imagine that she would probably have passed very soon?

Yes, and yes.

People who are tremendously unstable and imminently near death often pass away after very minimal amounts of stimulation, like turns. The key thing here is they have to be extremely near death. It happens all the time.

So, if she died right after you turned her, she probably would have died within a couple of hours anyway if you hadn't turned her. She was dying regardless. That had nothing to do with you. The only thing that had to do with you were the maybe couple of extra hours she could have lived.

Think about if you hadn't turned her and she'd lived an hour more - what would she have been doing? She was minimally responsive already. She wouldn't have been at a party. She wouldn't be having a conversation with you. She wouldn't be listening to her favorite music. She wouldn't have been doing anything meaningful to her; she'd just be lying there dying even slower. She didn't lose anything that would have been meaningful or special to her losing those potential hours or minutes.

Lying minimally responsive in the bed is ZERO quality of life. Extending that for what? A couple of hours, tops? A couple of hours of being unresponsive? There would have been no benefit.

I'm so sorry for your loss.

[motor_mouth, MSN, RN]

When my family member died, it was after repositioning. The hospice nurse told me that in her experience, death happens often after repositioning after a certain point in the dying process.

It's nothing you did.

[VegGal, BSN, RN]

From your post it's clear that you did all you could for your Mom and way more than many others would have done. You were blessed to have her and she was blessed in turn to have you, her loving daughter do all you could for her right until the end.

Guilt will eat away at you, and is not something you need in your life at all. You did you best! Thank God for your time with your Mom and that you were able to put your job / life on hold and do all you could for her. I'm sure she appreciates your love and care. God bless.

[tyvin, BSN, RN]

My mother just passed away at home and she passed when I was doing my shift (I set up shifts for family members & we had agency sitters). I made the usual turning sheet schedule, BnB, BP... We had hospice on board as well. My mother was doing well and I'm thinking to myself she'll probably go for about 3 months. The hospice nurse (hn) that was assigned to our home dropped the ball and gave my family members very bad advice. I had moved back home a year prior d/t my mother's physical and mental decline.

Two weeks after my mom was in her home on hospice, my mother was indicating that she was in pain and she was agitated. I'm told she tried to move around, tried to get out of the hospital bed set up in the frontroom, had grimaced look and was moaning. My niece called the hn and not me. Without coming to the house to check on my mom, hn told my niece to increase the morphine, give her ativan AND haldol. When I got to my mom's house that night coming back to work nocs from a weekend off, my mother was basically in a coma. She would respond to stimuli but...could not open her eyes or respond to verbal communication. Prior she was communicating with us by talking, smiling, looking at us. My mom had been bed bound since coming home. She had dementia as well with CHF

After I took report from my niece I was speechless. My niece told me the hn came out to see my mom after she had given my niece orders to give all the medications and she did. I asked my niece what the hn did and she said that the hn listened to my mother's bowels. I asked my niece if the hn had looked at our book or turned my mom over to look at her bare butt and was told that hn did not. If hn would have looked at the documentation, she would have seen my mom hadn't had a bowel movement in 6 days. My mother had already gone 3 days without a bowel movement prior to my leaving for the weekend and I noted it in the communication notes.

After my niece leaves I go to inspect my mom and low and behold...she had "5" stage I decubitus ulcers forming on her butt: one was directly on the coccyx (obviously no one was turning her). Her abd was hard; I knew she was impacted. I called the on-call hn and told them we needed a pressurized mattress, a foley and whatever drsging their agency uses to pressure ulcers. The hn came around noon and they made it all happen

Ok; that's two never events so far

This hn also taught my family how to use the oral swabsticks. So, no one was using toothpaste or mouthwash with the oral swabsticks. You can and should use a toothpaste mixture or dip the foam end in mouthwash and clean the mouth that way. The oral swabstick just needs to be squeezed fairly well (depending on the condition of your patient).

So, this one night I noticed that someone kept putting the toothpaste back into the bathroom. Her breath smelled awful after I had been off for another weekend (it seems every time I'm off on the weekend something happens). How hard is it to do oral care? Last weekend with all the incompetence was really bad. My niece and sister continue to give my mom morphine and ativan (I wasted the haldol after what happened and got in trouble from the social worker who threatened to suspend services: I told them go ahead...please) anyway back to oral care... I'm told by my niece that the "hospice nurse" didn't show us that way (I was born with my family but raised somewhere else, so when I come back upon the scene: let's just say I didn't get a big welcome home party except by my mother. I tried to reason with their common sense that if you don't put something on the oral swabstick that the mouth will become a sewer in a few days (I didn't say that exactly).

My mother continued to stay in coma status and my sister and niece kept giving the morphine and ativan (she wasn't moving or moaning). On my shift I would give her morphine for comfort measure but it didn't stack up to the amount the others were giving her. She simply did not require it all to pass with dignity. They just wouldn't listen to me.

Anyway, as a hospice nurse myself, I will tell you that people pass many different ways. The night I come back to work after the weekend, I did oral care with toothpaste and her mouth smelled beautiful. My mom is a very meticulous person when I comes to her face and teeth. After performing the oral care I was sitting in a chair beside the bed holding her hand. As I was gazing into my mom's face She opened her eyes and smiled; a full frontal smile and looked directly into my eyes, than passed away.

I absolutely know I didn't kill her by doing oral care on her. Just as I know you did not kill your mother by turning her...it was her time.

[DeeAngel]

I don't see where you did anything incorrectly. Your mom was 70 and when your number is up, it's up. Nothing you could have possibly done differently would have changed a single thing.

[manager123]

You are an amazing daughter who provided care that was above and beyond. Sadly, our moms don't live forever except in our hearts. Please reach out to talk to someone. Surprisingly even our funeral homes here have resources for grief counseling. Even for those of us who 'know' our moms (or dads or other loved ones) are going to pass because of the diagnosis, the actual death can be a surprise and bring emotions we thought we were immune from. You and others are daughter first and nurse second. Nurses can't prevent death even though, sometimes, we try really hard to avoid that happening.

I am a believer in comfort over rules. My own mother, in her final week, could not tolerate a particular side lying position. She could not breath that way with comfort. It was obvious. The staff in her assisted living honored my request to not turn her to that particular side. Did she develop DTI pressure ulcers on her heels and butt? Yes. Her body was shutting down and her circulation was minimal. Did I feel guilty? Yes. Briefly. In my mind, breathing with comfort overrode the potential for DTI or other pressure ulcers. I was the one who found them and showed the staff. The administrator apparently had heart failure when they told her about the ulcers and insisted that a butt cream be ordered and applied. It came the afternoon before she died. The point of ordering it was beyond my fogged brain. I offered to write a letter to be placed on her file that the 'daughter refused turning protocols' if the were investigated (I believe that was her concern). I also told the aides and staff to document my refusal. Although it was tough to see those, I knew physiologically that the skin was the least of our priorities in her final obviously dying days/hours.

Blessings on all nurses who are blessed to be able to provide or assist in the care of their loved ones. Remember to be allow yourself time to be a daughter or son or grandchild first. Feel your pain and your loss and I pray that happy memories will replace your sadness and loss.

[LadysSolo]

I worked oncology for 23 years, and when someone got the "faraway" look in their eyes, we knew it would be soon, maybe not immediate but they were looking for someone. You did nothing wrong - your mom needed to go. You got her nausea and pain under control for her last few hours - you made it easier for her to rest. This is a good thing.

[LetLoveNReasonUnite]

I am so, so sorry for the loss of your mother. You provided her with exceptional care and it sounds like you were very diligent during her final hours. It sounds like it was her time to go, unfortunately. There was nothing else you could have done, or should have done. Your mother was fortunate to have you there with her in her last hours. Please ensure you are taking care of yourself now, and please don't blame yourself.

[cdkelly]

As nurses we think we can fix all especially when it's somebody we love. I know how you feel. I recently lost my brother to lung cancer. He was septic from pneumonia and it was my decision to give him 3 mg IV morphine to ease his anxiety when Ativan didn't work. His heart rate was in 170's at the time. My brain knows that the morphine did nothing to hasten his death but my heart doesn't. Turning your mother did not hasten her death. If there is anything I have learned in over 20 years of nursing is when it's someone's time NOTHING will change it. You did nothing wrong. Hope it helps.

[kakamegamama]

So sorry for your loss. You did all you could do for your mother, and did nothing to cause or hasten her death. Take care of yourself.

[offlabel]

It is a rare privilege to care for your mom to the point of death. So few of us get that. You returned to her the unconditional love she gave to you as a child right up to the point of her death. Do not diminish this gift of yours to your mom and hers to you with fear. That does not come from her.

She had a natural peaceful death that you were there for. Take that with you for the rest of your life. Be at peace. Your mom is.

[foggnm]

I'm sorry your mom passed. I hope your heart can find peace during this time of sorrow.