I Feel Like Hell

[Gwensdaughter75]

Hello.  I am new to the forum.  My mother died this past Wednesday,  on April 3rd and all I can think about is how scared she was to die and not be here anymore.

My mother had Multiple Myeloma that she had lived with for the past ten years.  She was diagnosed in 2009, went through a stem cell transplant and was given many different medications to try and keep it at bay.   Her oncologist threw everything at her that he could.  And I always told myself that when this day came, I would be grateful to him for all he had done for her.

But I'm not.  Back in November of 2018, my mother(I was her caregiver as she went through multiple hospitalizations due to side effects from treatments) told me that her doctor wanted to 'zap the cancer for good'.  Meaning he wanted her to do chemo orally, which she had been doing for some time, and intravenously, which she had not done since 2009.  My mother was 65 back then.  At 75, the oral chemo alone had taken a toll on her to the point where she could not walk really well and had shortness of breath.  She also had not driven her car in awhile.  I just didn't think she was up to it,  but my mother trusted her doctor and went along with it.

By Christmas she was in terrible shape, but I still thought that it was the side effects alone.  My mother was also a terrible patient.  She hated cutting out certain foods and wasn't following all of the doctors instructions, but she never really had all these years.  I also incorrectly assumed that the chemo would not go on much longer and that if the intravenous form did not work, she could go back to just taking chemo orally.

I was very wrong.  The chemo sessions, which were on Tuesdays, consisted of my dropping her off at the medical complex and the nurses taking over.  Then I would use a work break at 3:00  to pick her up and take her home.  But January turned into February and by the beginning of March, I was asking her how much longer? We were about to go into five months here and she didn't seem any better.

The last week of February, her doctor insisted she have a blood infusion at a local hospital he was affiliated with.  My brother, who could see how poorly our mother was doing, stepped up,  took some time off of work and took her to get this done.  That night, my mother had the first nose bleed. I  had never seen her have one in her life.  I called the oncologist who said that our house was probably dry and a humidifier would help her. He did not think it was related to her cancer and that her blood work looked really good.  

I said to him, 'you have kept my mother alive for ten years, so I'll trust you on this'.  He laughed and we both hung up.

The next week, on March 5th,  a Tuesday,  I got ready for work and saw that my mother just seemed more exhausted than usual.  I called the doctor's office and asked if I could bring her in on Wednesday, since she hadn't slept very well the other night.  They said fine and I hung up, made sure my mother had some breakfast before she went back to sleep and I left for work.

Two hours later, my brother texted me and said that the doctor's office had contacted him.  They said that my mother's platelet count was low and they wanted her to come in for a procedure.  My brother left work to pick my mother up.  I left work as well, because by that time my mother was actually so weak, she was having trouble dressing herself.  But I thought maybe the platelet problem was why she seemed so tired and weak.  I saw them off and then went back to work.

Fast forward to about one o'clock in the afternoon.  A co-worker told me I had a phone call. I answered it to my brother who told me that there had been no platelet infusion.  He and my mother were ushered into her oncologist's office, where in which they were told that my mother had 1-2 months left to live, that she could stop taking all medications and that they could help  her sign up for hospice.

I left work to go and be with them.  My mother couldn't understand how this had suddenly happened! I couldn't either and we decided to get a second opinion at a very good hospital.  But that doctor not only agreed with her main oncologist, he gave her less time than what had been predicted.

 He also revealed something else: he turned the computer screen so my brother, mother and myself could see it.  He said that this didn't just 'suddenly' happen.  My mother had been going down since December.  This doctor could only guess that her the other oncologist thought he could fix it and just couldn't. 

 The new doctor agreed to treat her with infusions of blood and platelets to keep her going until they couldn't.  He also prescribed antibiotics, medication to help her kidneys and nausea pills.  I also asked this doctor, in private, if he could prescribe a tranquilizer or something, so that my mother would not 'mind dying'.   He was gracious and kind in our despair.

Long story short, my mother lasted about a month.  She was put into hospice on a Monday and died Wednesday.  On Monday she was weak but still talking.  On Tuesday she was snoring away, and every once and awhile, she would grip my hand to try and sit up, but she would then collapse back on to the pillows and snore again.   l spent the night in her room Tuesday night and on Wednesday morning, a nurse noted that when they changed her or moved her positions, she did not wake up.  I figured she did not want to.

Wednesday afternoon, I was sitting next to her when her snoring began to accelerate in rhythm.  I got up and touched her arm, which was cold.  Then, she opened her eyes.  I had not seen her eyes open in days and I was so relieved! I asked her if she was hungry or thirsty and she looked right through me.  Then saliva formed on her lip and I didn't know if she was having a stroke or what.  I ran out to get the nurse and she came in and said that 'this was it'.  She held one of my mother's hands and I held the other and the nurse softly said 'you're alright, you're alright.'.  I literally watched her take her final breaths and then she closed her eyes.

I know I was long winded here, but what hurts so much is that my mother was scared.  Frightened.  And this last month, for me,  was about being unable to tell her it would be alright.  There was no comfort I could give her. If I could have told her that this was a nightmare and it wasn't true, I would have.  And I cannot get past that visit on March 5th.  If my mother was already in trouble back in December, than maybe my brother and I could have better prepared her to die back then. 

The only comfort I can take in this ordeal, is the fact that my mother does not have to spend her waking hours wondering about what death would be like and being afraid of it. I just want it to be a year from now, or years, when I can tell this story to someone and not feel like my whole world has fallen apart.

I thank anyone and everyone for reading through my gibberish.

 

[sadandlost]

Dear Gwensdaughter,

I am so sorry for your loss.  I read your story and I'm sorry for all you've been through.  Its going to be very hard for while.  In a year it will still be very hard.  The only difference is you get used to the pain of loss.  The pain does not subside but somehow it becomes part of you and feels less raw and shocking only because you've lived with it for longer.  I still relive the time in hospital with my mother and its now over 2 yrs.  We are all here because we are going through the brutality of loss.  We know what it feels like.  I hope you have some support and love around you.  

[Gwensdaughter75]

You have.  Just that you responded has helped.  Thank you.

[Nicole-my grief journey]

Gwensdaughter,

My heart feels your hurt and anguish. I am so sorry that you have experienced this and are experiencing this. I know what it’s like to lose my mother and go through watching her suffer and trust doctors and experience the trauma of it all. There is so much I can’t put into words right now...

I am thinking of you and your family. I am saying prayers for you and your sibling and everyone who loved her dearly. I don’t think what you expressed is gibberish at all. Thank you for sharing it with us. I identify with a lot of it. My mother kept reaching for me in the hours she was passing. I watched her breathing, knowing I was losing her. I held her and I feel lucky that I got to be with her in the end as she was there for me my entire life. In my grief I go back to that. It was the most emotiona, painful l thing I have ever experienced. I too wish to fast forward and only think about the good memories, love and everything she brought into this world. I go back and forth with it all as I’m still trying to accept it and process it. I feel like every time we share what we’ve gone through that it helps us process our grief. I hope that you will continue to share. I know right now it’s all too much to process  because it’s so fresh. I hope that there is support around you with friends and loved ones and that the palliative team gives your family grief resources. I see a therapist and suggest a resource like that to others if they are able to do so because I know it is so overwhelming (to say the least).

Hugs, tears for your loss and love to you,

Nicole

[Gwensdaughter75]

Thank you for your comforting words.   

[reader]

Dear Gwensdaughter,

My deepest sympathies and condolences. I am so sorry to hear everything you and your mom went through.

Please know we are with you.

Thinking of you.

[Gwensdaughter75]

Thank you.

[nuvar]

Dear Gwensdaughter75, sorry for your loss and my deepest condolences. What I read, brought about flashbacks of what happened to my mum. I can remember how you described the last moments and it wrenches my heart

You tried your best to help and save your mum. The first doctor tried too and he did it for ten years, but I agree that he left out details and possibly (?) screwed up. In my case, we were ill-advised from the start and my mum's diagnosis was all wrong and the treatment screwed up totally. We were advised for an op with superbly high risks and didnt give us time to consider. Instead of extending her life at all, my mum left prematurely, within 8 months when she would more than likely be still alive today.

You did whatever you could, so did your brother. Im sure your mum knows and loves both of you. I think she saw what you and your bro did for her in the 10 years. I believe she knows how much you loved her.

You would want more time to prepare, so did I. But no amount of preparations would have been sufficient. I didnt get any time at all to prepare. I literally sent her to death 

I even left the hospital on the same night after the ill-advised op because she seemed to be doing well. She was taken off ventilator and could reply to me - i think she signalled me to go home or wrote something, i cant remember exactly. Next morning out of sheer coincidence or some bad foretelling, my computer crashed and the doctor called me within 10-15min later and I had to rush back to the hospital

I slept outside the ICU for 2.5 months and in the end everything was pointless.

I dont really know what else I can say to make it anyway slightly better for you. Take care and we are with you, please feel free to reply to this thread.

Once again, my deepest condolences and sympathies to you and your family, my sincere apologies if you feel I digressed and/or made it harder for you. Take care

[Gwensdaughter75]

Thank you.  It helps to find people that truly understand.  I am going back to work today and I just don't want anyone feeling sorry for me.  I don't want to break down.  But the horrible thing here is, that in her last moments, I was watching her mouth.  I was watching when it would stop moving because that would be her last breath.

I'm just hoping getting back to work and in the swing of things again, will  help.

I read your post, Nuvar, when I first joined the forum and it broke my heart.  I hope you too are beginning to  heal from the loss of your mother.

[nuvar]

2 hours ago, Gwensdaughter75 said:

Thank you.  It helps to find people that truly understand.  I am going back to work today and I just don't want anyone feeling sorry for me.  I don't want to break down.  But the horrible thing here is, that in her last moments, I was watching her mouth.  I was watching when it would stop moving because that would be her last breath.

I'm just hoping getting back to work and in the swing of things again, will  help.

I read your post, Nuvar, when I first joined the forum and it broke my heart.  I hope you too are beginning to  heal from the loss of your mother.

I went back to work within 1 week also. My boss asked if that was sufficient but i took like 2 months "off" already. And I lack the money to pay loans and for my dad. I wanted to grieve longer but I couldnt. I wanted my mum's wake to be longer but no one was free for her. haiz

I think working is good too. It helps to keep your mind off things once in a while.

[Gwensdaughter75]

I really hope so.  I just closed her bedroom door.  The room represents illness.  There are kleenex's and old cancer medications all over the place.  I'm headed out to work. Wish me luck!