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Tired of being pissed off.
Posted: Tuesday, June 9, 2020 12:30 AM
Joined: 6/8/2020
Posts: 1

My mom was diagnosed (and I use this term lightly) when she was 54 years old with some type of dementia.. They didn't know what it was so they just called it Alzheimer's. During the first 3 years she was living with my sister but we had found out she wasn't getting the care she needed there and had gotten to the point where she was no longer able to adequately care for herself and my sister wasn't taking care of her either so my (at the time) fiance quit her job and we moved my mom in with us so my fiance could take care of her. 

We spend the next 3 years going to appointment after appointment trying to figure out what was happening to her as she slowly slipped away. We started with lumbar drains, medications, and a long list of other trials.. Finally the best we were able to find out was that there was 2 different antibodies that her body was making that were attacking her brain. They didn't know why or what was causing her body to make these antibodies. We went through 2 weeks of Plasmapheresis to try to rid these antibodies but they continued to just come back. Eventually the neurologist (4th one we seen that found the antibodies) pretty much told us that they have only had 6 other cases of this and of those 6 cases none ever showed any improvements or survived. 

By this time she was now 6 years into it and her mind was completely gone. She had no idea who or what anything was, she could no longer, walk or talk. She'd sit in a chair and scream all day. My wife (Yes we got married by now, figured if she was willing to wipe my moms butt, she was a keeper lol) would still do physical therapy with her and honestly took better care of her than I ever could have. We were told by her Neurologist that now we just needed to focus on comfort care, so that's what we did. We tried to make her as comfortable as possible, we were prescribed a cocktail of medications to help keep her calm and not scream the entire day and night (It helped about 40% which was still a god send!).

2 years we did this, she kept hanging on. She would open her mouth when she seen a spoon (or finger) near her nose but that was the extent of her abilities.

Monday morning January 27th, 2020: she wouldn't eat. She never wouldn't eat. Something was wrong. Against the Neurologists advice (He knew it was time), my wife decided we must take her to the hospital. We got to the hospital, they did some scans, turns out she had a small bowel obstruction. They admitted her and decided surgery was the only option. 

Tuesday, an hour before surgery, her lung collapsed. They postpone the surgery another day. Wednesday everything is stable, they take her in for surgery. Now I'm already unsure how I feel about doing surgery on this already frail and weak woman but she's my mom.. My sister (Not the one that had taken care of her in the beginning, turns out she was admitted to the hospital on Tuesday (The day before - More on that in a bit)) and aunt helped me decide that we would give it a shot. About an hour into surgery the surgeon comes out, takes us into this small room (I already know this is going to be bad) and tells us, he cut her open, her entire lower intestines are completely black and putrid, he tried to touch one and it exploded. "The state she's in isn't compatible with life". He asked if we wanted him to put the parts he cut out back inside her (Religious reasons I believe) which we weren't too concerned about. 

The surgeon just told me, my mom wasn't waking up from surgery. We have watched my mom slowly die for the past 8 years, my wife had lost it, I.. I not so much.. I'm not sure why but I was slightly relieved that she was no longer in any pain.

We stepped outside to call my sister and my aunt to tell them that if they want to see her before they disconnect her, to hurry and get to the hospital. Within minutes after getting off the phone with them (Maybe 15 minutes after the surgeon told me there was nothing he could do) the surgeon calls my cell phone. "I'm not sure what happened.. I went back in there after talking to yall to close her up, her intestines were pink and healthy looking.. they were black when I left.. I can't explain it any better than a miracle.. I finished the surgery and closed her up, she'll be going back to her room in the ICU".

What The F***!?

We call my sister and aunt back and tell them to slow it down a bit, don't get in any wrecks but keep coming because we have no idea the outcome.

Thursday - Still hasn't woken up from anesthesia.

Friday morning - Still hadn't woken up from anesthesia.

Friday night - She opens an eye but still super out of it (Even for her)

Saturday morning, her eyes are open, she's as coherent as she was before we went in to the hospital but she's in quite a bit of pain from the surgery so they have her pretty sedated still

Saturday night, we left the ICU at 7:30pm due to shift change where they kick us out every morning and night at 7:30 for 30 minutes so they can change shifts.. we left the room, she was about the same as she'd been all day. We came back into the room at 8:01pm. Her ENTIRE body was swollen up like a balloon. The new nurse had no idea that she didn't look like that before we left.. Luckily the nurse we had all day was still there and came and looked at her and said most definitely she didn't look like that.. They did an xray.. Complications with the chest tube from the collapsed lung! They replaced the chest tube but she still was a balloon. My mom when she came to live with us was 135lbs, over the 6 years she went down in weight and was 96lbs when we went into the hospital. No idea how she lost weight because that woman would out eat anyone I knew and it was all good home cooked food every day.. Anyhow.. back on track, the amount she was swollen, she looked like she weighed over 200lbs. They said it wasn't life threatening, just was physically unsightly and would go away on its own.

Sunday - Still swollen, but coherent and in pain

Monday - I feel like I've forgotten to tell you that she's been having blood pressure issues and afib since we'd been in the hospital and that's what ended us up in ICU the very first night.. So Monday they think they finally got everything under control and are going to try to remove the ventilator that they put in during surgery. - She didn't last long enough with it turned off so they decided to wait another day or two.

Tuesday - Still swollen, but coherent and in pain, started talking about aftercare when they release her.

Wednesday - Try to remove vent again and successful - Still swollen but coherent and in pain

Thursday Morning - Talks about moving her to a regular room (Non ICU) and keeping her there for another week or so before releasing

Thursday Afternoon - Blood Pressure and AFIB issues arise again

Friday February 7th, 2020 - I dropped my wife off out front of the Hospital so I could run into work for a few hours since I hadn't been there in 2 weeks now. (Between myself and my wife, someone was there with her from 8am to midnight every day so far). My wife was waiting in the ICU waiting room for them to unlock the doors at 8am so she could go in.. 8:01am She walked in and walked right into my moms room as she had done for the last 2 weeks, she sat her bag down and looked at the monitor and seen it was turned off, looked at the white board to see who the nurse was and there was no name, looked at my mom, thought she was asleep.. Seconds later 2 doctors come rushing in informing my wife that my mom had passed away not even a minute prior, they called her time of death at 8am. They had just left the room to go call us and start documenting. Moms heart gave out. They say she didn't suffer, which in my heart I don't believe. I know she suffered, she felt pain, It kills me that there was nothing I could do about it and that my wife or I wasn't there. 1 minute. 1 minute earlier.. No there's nothing we could of done, but she'd of known we were there. My wife called me hysterical, I turned around and rushed back up to the hospital. We called the funeral home, made arrangements and left. I kissed my moms forehead when we left, it was cold already, I still can feel her cold forehead on my lips. It bugs me a lot. I wish I never gave her that last kiss sometimes because that's all I can think about now, that cold dead forehead.

Just let me finish this part then I'll wrap this up.. My sister, the one that was also admitted to the hospital, well apparently she had cancer and never told anyone.. They gave her 2 Months to live, kidneys and liver had already started to fail. She made it 10 days and passed away on February 17th, 10 days after my mom.

My mom.. I feel like I grieved losing her for the last several years of her life as she was no longer the sweet, funny, sarcastic mom I had but just a blank empty stare. Everyone has cried over her passing, and my sisters passing for that matter. I can't cry. I've tried. I want to cry, I think. I'm pissed that I can't. I'm pissed that at 62 years old she was gone. I'm pissed at this stupid disease. I'm tired of being pissed off, hence I'm here telling a bunch of strangers my life story in hopes that someone out there has had the same feelings I have had and maybe found a way past it.

Posted: Tuesday, June 9, 2020 9:19 AM
Joined: 7/30/2013
Posts: 6066

Wow! I am so sorry for your losses. All forms of dementia just suck royally. My husband died in February. He had younger onset Alzheimer's disease for 8 years. He was 65. He had a seizure 8 days before his death. This was his first and only seizure. He fell and fractured both shoulders. His right shoulder blade was completely shattered too. I had him transported to the ER. After CT scans revealed the true extent of the damage, an orthopedic surgeon halfheartedly recommended shoulder replacement surgery. I declined. Hubby was on hospice and surgery is just never a good idea on patients in such a state. I'm actually stunned that they agreed to surgery on your mom given her already poor health. 

I can understand your anger. I am a woman with strong faith in God, but I got very angry with him during the final couple of years of my husband's life. Why does he allow people to suffer so? I still can't answer that, but I am so relieved that hubby is no longer suffering. Grief is a journey that can take a long time. Maybe you could get some grief counseling or attend a Grief Share class. You don't want to get stuck where you're at. You need to process and work through your feelings. 

Posted: Tuesday, June 9, 2020 12:16 PM
Joined: 4/1/2014
Posts: 5213

AH, I am sadden by your terrible losses. I'm sorry for you and your family in losing not only your mother, but your sister as well. It is no surprise that anger is the stage of grief that you have remained in since Feb. It is very unfair that you lose your mother that way, and your sister 10 days later. I know how heartbroken you are under the anger. 

I will share something with you- my mother died alone as well- and she lived in my home! I had kept a vigil for her for 3 days-hardly leaving her side-but that evening I went to another room to say good bye to my sister who was leaving to get another sister. My husband walked by my mom's room and saw that she was no longer breathing. We were only gone for 5 minutes! I ran in and hugged her but she was gone. I want to believe she (or our Lord) picked that time for her to leave us-when we sisters were in another room, talking and smiling-not over her bed with tears in our eyes.

I know it is hard to recall that last kiss to your mother's forehead, but if you hadn't done that-you might be sad that you hadn't given her one last kiss. I hugged and kissed my mom for hours before she was picked up. It gives me peace when I think about it, because I know other friends who never got to do that with their LO's and some wish very much that they could have.

You have suffered some terrible losses this year and with all that is going on-it is no wonder you are pissed off. I hope you will give yourself credit for providing a safe and loving home for your mother all these years. It is a thankless job and one without a map or timetable. We just do the best we can with what we know and it looks like you did everything you could for your mother.

Best wishes to you and your wife as you begin a new phase in your lives.

Posted: Sunday, June 14, 2020 6:53 AM
Joined: 2/6/2018
Posts: 646

This was an awful situation that all of you went through. It's traumatic. I'm so sorry for your losses. And I'm so glad you shared the details of your experience and how you are feeling because I think seeing someone else's experience as an outsider is helping me process my own feelings which are similar. I lost my Dad in May. He also died alone in the hospital (not my choice, and I'm very distressed and angry about it) and there was also a traumatic and awful physical situation going on for 12 days in the hospital that was not fully understood or under control and there was suffering involved and changes in his status over and over and over, plus difficult decisions to be made on the fly. I feel tormented by these aspects of the loss - how the whole thing ended and went down after over 2 years of my loving care provided at home. I think we are suffering from multiple issues: there's the loss of the parent/LO, and then there's the circumstances of the loss. And in your case, the extra tragedy and anger about your Mom being so young. And in all of our cases the awfulness of dementia and all it entails. My first reaction to learning of my Dad's sudden death (much like what happened with your Mom) was anger, which surprised me. I wasn't crying, I kept saying "I'm so mad!" and I wanted to strike out.  I know that anger is a part of grieving but I didn't expect mine to start immediately and be so predominant. It still is. So far, nothing has made any of this acceptable in my head so I am just counting on time to hopefully bring me acceptance (what happened will never be okay) and a softening of my feelings and traumatic memories. I have also had to work hard to not think about it (which is not my nature) - the feelings and memories come in on their own but I try to let them flow out again without me making them more painful by going over it in my head repeatedly. I've had to do this because I would literally be destroyed otherwise. I have a little book on loss, one page for each day of the year, and I am finding that all of my feelings and experiences are shared by many, including the anger. And that there is no right way to grieve or feel. And I'm not going to let anyone tell me how I should grieve/feel (one person tried).  I really think that it's okay for us to feel what we do, even if it's all anger, and not resist it and that it will take care of itself in time if we allow it to just be.  

Posted: Tuesday, June 16, 2020 7:44 PM
Joined: 6/16/2020
Posts: 7

I know it's hard to fathom, but many wish to pass in peace alone. Many instances where the family sits vigil the moment they step away is the moment their loved one passes.
Posted: Wednesday, June 17, 2020 7:12 AM
Joined: 7/30/2013
Posts: 6066

cicihep wrote:
I know it's hard to fathom, but many wish to pass in peace alone. Many instances where the family sits vigil the moment they step away is the moment their loved one passes.
You know what? I think that's actually what happened in my husband's case. I was sitting with him when I heard his breathing change. I ran to the bathroom because I really had to urinate badly. When I got back just a couple of minutes later, he was gone. He took a few breaths, but I couldn't find a pulse. Those breaths must have been agonal. It doesn't hurt me that I missed the actual moment of death. On some level, he knew that I was near him and that's enough. 

Posted: Friday, June 19, 2020 8:48 AM
Joined: 5/14/2018
Posts: 256

AH, it happened with my mom that way too. My sister and dad (who lived with my mom) were by her side almost constantly near the end.  This particular day at  2:10  (my sister remembers because she looked at the clock when she left the room), my dad (who also has dementia) got up to go in the kitchen and my sister went to do some work on her laptop.  When my sister went back in she saw that mom wasn't breathing. The Coroner called her time of death at 2:11, one minute after they had left the room. The truth is; a lady knows when to leave and they do it on their own terms, when they want to. 

I'm so sorry for the tremendous loss you have recently experienced.  God bless you as you navigate through your grief. It helps to "talk" to strangers so come here often.  Lots of experience in this room. 

xoxoxo -Kat

Posted: Friday, June 19, 2020 12:29 PM
Joined: 5/21/2016
Posts: 2012

Hi, Friends -- adding my story to those who "left" on their own terms.

My dad, who was fiercely independent, had to finally depend on us for many things. But he determined his own time of death!

I had left the room so briefly, to take a phone call from his son, who had responded to my last email by deciding to drive to see his dad.

During that momentary phone call, my dad, in the other room, expired.

I was back in the room in time to see and touch his warm self, his smile, and a rainbow on the wall directly behind him.

But he, somehow, wanted me to be on the phone with my brother at that moment.