I need my Mom...I always will!

[Steph Rae]

My Mom passed away 12 days ago from complications resulting from contracting the bacteria clostridium difficile (c-dff, for short) in her colon.  This bacteria is normally caused by long term use of antibiotics for a different infection in your body and the antibiotics end up wiping all of the good bacteria out of your gut.  My mom had not been on antibiotics for almost 3 years! The other only known way of contracting c-diff is "fecal to oral route", meaning someone could have had the bacteria and not know it yet, used the bathroom without using good hygiene, as in... NOT washing their hands, then handing mom a cookie to eat and that simple...c-diff could take over your colon! NOT always are the outcomes as horrible as my poor Mom's. To this day, we know of NO other cases of c-diff anywhere that my mom had been which was only 2 places SO...even how she initially contracted this hideous infection is a mystery! She was diagnosed on December 28th, 2017 and everything went downhill rapidly. I am full of pain, anger, confusion right now. I feel that her death was unnecessary due to the bacteria not being treated aggressively enough despite the fact that she was getting NO better but worse, day by day. Mom had been in a nursing Home for 2 years recovering from a total hip replacement and pneumonia and she was in the initial first stages of dementia but that was minor. I live 2 minutes from the nursing home so mom came home with me weekly. we talked daily. She walked with a walker...she was not wheel chair bound or any limitations of that kind. Despite constantly questioning the staff at the nursing home and asking if her Dr was completely aware of her decline daily.... why mom seemed worse daily, it seemed NO ONE would listen to me! The third week into this illness, they finally granted my request and sent her to the ER. This is where the worse nightmare of my life began. We went from the ER to the next day making decisions about emergency surgery to remove her colon because she was now SEPTIC. She had Toxic Megacolon and her colon was going to rupture at any sec. She was put on life support, rushed to surgery to do a loop bowel and colostomy as well as a illeostomy. Mom had her eyes open for 2 days after surgery, squeezing my fingers, following simple commands and even mouthing "i love you too" every time I told her..."i love you Mom". The next day she coded in front of me, they revived her quickly but nothing improved in the slightest after that. She had multiple strokes, she was paralyzed on her left side, Her blood pressure was so low they had to keep her on a medication just to keep her blood pressure from plummeting. Her kidneys started to shut down. She was so swollen that her body was weeping fluids, through her skin....all of this was from becoming septic from the out of control c-diff. Her temp was 104-105. Her heart rate stayed high and B/P low. I watched my best friend fight this battle for 11 days before making the gut wrenching decision to remove the life support and let her go. The worse position I've ever been in in my life. The doctors gave her 0 chance of survival at this point. At 11:30pm, jan 31st, They turned off the drips, all but the ones to keep her comfortable. Then, They removed the ventilator. for 3 hours and one minute, my mom fought to stay alive. I held her in my arms and assured her that I would be ok, and my son as well, that she could let go and go Home with Jesus. I begged her to not suffer anymore. I could not stand seeing her struggle for every breath. Finally at 2:31 am, she let go. I remained on the pillow beside of her, I still could not bring myself to let go of her. The only peace i have is that she is finally reunited with my only sibling that died when he was 36, My dad, mom's brother, my grand parents.....I'm not a stranger to grief. BUT NO GRIEF HAS EVER FELT LIKE THIS ONE! I still hear her breathing whenever my surroundings are quiet. "the death rattle", that sound tortures me. I could keep writing but I am at a point of "the shakes" now so i will stop for the time. I just know that someone here must know how terrible i feel...i cant be the only one...i may be 41 years old but I will always want my Mama!! I miss you and love you Mama more than the world...until we meet again, save a place for me.

[reader]

Dear Steph Rae,

My deepest sympathies and condolences. I am so sorry for your pain and sorrow.  Please know you are not alone. We are all to listen and support each other. Sending you love and hugs.

I know you loved your mom very much and those moments are extremely hard. We all want our parents with us as long as possible no matter what age we are.

Keep writing and reaching out. I know its really hard. Thinking of you. Sending all my thoughts and prayers.

[sadandlost]

Dear Steph Rae,

I am so sorry for your loss.  I agree with you that there is no grief like losing a mother whatever age you are.  I am 10 yrs older than you and losing my mother almost completely broke me.  Only 1 yr on I am coming through the other side.  I still miss her every day and talk to her out loud but it feels a bit different now.  I'm not in a black hole anymore.  The sadness doesn't go away but I am not buried in darkness as I was for an entire year.  Its true we will always need our mothers but I believe we can adjust to what has happened and we adjust to the loss but it takes a long time.  Maybe a life time?  So sorry for what you've been through.  It takes a while for the shock to wear off.  You are still in that place and might be for a couple more months.  Reach out and talk to people here.  it helps.

[Steph Rae]

On 2/15/2018 at 4:33 AM, sadandlost said:

Dear Steph Rae,

I am so sorry for your loss.  I agree with you that there is no grief like losing a mother whatever age you are.  I am 10 yrs older than you and losing my mother almost completely broke me.  Only 1 yr on I am coming through the other side.  I still miss her every day and talk to her out loud but it feels a bit different now.  I'm not in a black hole anymore.  The sadness doesn't go away but I am not buried in darkness as I was for an entire year.  Its true we will always need our mothers but I believe we can adjust to what has happened and we adjust to the loss but it takes a long time.  Maybe a life time?  So sorry for what you've been through.  It takes a while for the shock to wear off.  You are still in that place and might be for a couple more months.  Reach out and talk to people here.  it helps.

Thank you sadandlost for reaching out to talk to me.  It has now been 23 days since my Mama passed and I see nor feel any relief in sight.  I have made myself physically as well as mentally sick and I know that my mama would NOT want me to do this to myself in any way.  I just cannot get passed the suffering I witnessed her endure the last three hours of her life.  I can't sleep, I have to force myself to eat, even get out of the bed.  I'm not sure if i mentioned this before, i seem to have this overwhelming brain fog that will not clear but I am no stranger to grief.  Starting at age 13 and moving pretty swiftly, I lost my paternal grandmother whom i thought was a saint!  Then a massive stroke took my Father when I was 19 years old.  1 1/2 years later was my only sibling, taken suddenly as my dad.  Then my baby girl when I was 16 weeks pregnant.  Both grandfathers within 6 months of each other.  My Nanny that I took care of until her very last breath (which was peaceful). 2 years later, my step father who raised me since I was 2 years old as his own, again, very sudden with a rare pulmonary disease called pulmonary fibrosis.  Last November, My 21 year old sons girlfriend went away to college and before her freshman year was up, she was found dead and it is being called murder.  I thought I was going to lose all sanity at this point and then.....the unthinkable.....my healthy 77 year old mom gets c-diff and is dead within 5 weeks of diagnosis!!!  NOTHING HAS HURT ME LIKE MY MOTHER'S DEATH has ripped my heart out.  I have 2 people left in my life that I love more than anything, My son and my fiance and now i am debilitated from fear because I can't stand the thought of losing them or anything else to tell the truth.  How much can one person take?  My mom was the one person that no matter what...NO MATTER WHAT...she ALWAYS put peace and comfort in my mind and heart for what ever reason needed!  I wake up daily and YEARN to call her. To hear "i love you baby girl".  I am so sad.  I don't know how to help me be ok......

[Steph Rae]

On 2/14/2018 at 3:34 PM, reader said:

Dear Steph Rae,

My deepest sympathies and condolences. I am so sorry for your pain and sorrow.  Please know you are not alone. We are all to listen and support each other. Sending you love and hugs.

I know you loved your mom very much and those moments are extremely hard. We all want our parents with us as long as possible no matter what age we are.

Keep writing and reaching out. I know its really hard. Thinking of you. Sending all my thoughts and prayers.

Thank you for your kind words.  This is indeed the worst hurt my heart has endured.....

[sadandlost]

Dear Steph Rae,

youve suffered a heartbreaking level of loss in your life that is unimaginable.  I have too but nothing compares to what you’ve gone through.  Having gotten through the worst 2 years of my life, the first being when my mother’s illness progressed, the 2nd being the year after she died, I wanted to tell you what I’ve learnt.

No one can understand what you’re going through.  No one knows what to say.  Sometimes you even loose friends because they don’t know what to do.  Grief isn’t what I thought it would be.  Loosing my mother isn’t what I thought it would be.  It’s much worse than anything I imagined.  I felt like a child again.  I felt all the goodness had gone with her.  Nobody would love me like my mother.  I developed a lot of anxiety that developed into obsessive behavior.  Coping mechanisms.  I didn’t work.  I basically did nothing.  I was severely depressed.  The fog you mentioned is depression.  I didn’t speak about it.  No one knew.  No one really asked after few months.  It was a dark dark year.  I tell you all this because now I’m on the other side of it.  I’m not happy.  Every day I miss my mom, every day I talk out loud to her.  My dreadful family situation is still going on.  I’m basically estranged.  I do still feel anger, I still relive that last year.  I’m sharing all this with you because it DOES improve but it takes a long long time.  I won’t get over the loss ever but I am rebuilding my life and i do feel better.

You will feel better but it’s going to take a very very long time.  One day at a time.  I’m so sorry for you.  Accept it’s going to take a long time.  You are just at the beginning now.  Try to look after yourself.  I focused on self care even when I didn’t feel like it.  You are in for a rough year and I’m sorry.  Keep writing, seek grief counseling if you are comfortable with that.  Lean on your partner but accept he can’t know what it feels like.

[Steph Rae]

On 2/24/2018 at 2:32 PM, sadandlost said:

Dear Steph Rae,

youve suffered a heartbreaking level of loss in your life that is unimaginable.  I have too but nothing compares to what you’ve gone through.  Having gotten through the worst 2 years of my life, the first being when my mother’s illness progressed, the 2nd being the year after she died, I wanted to tell you what I’ve learnt.

No one can understand what you’re going through.  No one knows what to say.  Sometimes you even loose friends because they don’t know what to do.  Grief isn’t what I thought it would be.  Loosing my mother isn’t what I thought it would be.  It’s much worse than anything I imagined.  I felt like a child again.  I felt all the goodness had gone with her.  Nobody would love me like my mother.  I developed a lot of anxiety that developed into obsessive behavior.  Coping mechanisms.  I didn’t work.  I basically did nothing.  I was severely depressed.  The fog you mentioned is depression.  I didn’t speak about it.  No one knew.  No one really asked after few months.  It was a dark dark year.  I tell you all this because now I’m on the other side of it.  I’m not happy.  Every day I miss my mom, every day I talk out loud to her.  My dreadful family situation is still going on.  I’m basically estranged.  I do still feel anger, I still relive that last year.  I’m sharing all this with you because it DOES improve but it takes a long long time.  I won’t get over the loss ever but I am rebuilding my life and i do feel better.

You will feel better but it’s going to take a very very long time.  One day at a time.  I’m so sorry for you.  Accept it’s going to take a long time.  You are just at the beginning now.  Try to look after yourself.  I focused on self care even when I didn’t feel like it.  You are in for a rough year and I’m sorry.  Keep writing, seek grief counseling if you are comfortable with that.  Lean on your partner but accept he can’t know what it feels like.

Today makes 63 days since my mom passed.  Today, my heart still aches the same nauseating aching pain that it did the moment I was informed my Moms time on earth was approaching swiftly.  Today, I still feel completely and utterly alone in my pain that I sometimes wonder if God has forgotten about me and that I am desperately seeking His comfort and peace because no other human has came remotely close to making me think, even just a tad, that they understand my life right now....only you and the others that have responded to my cries of grief on here.  Today, I am so confused as to why I feel i have been neglected by two really close friends that have been in my life for YEARS but have somehow forgotten to even check to see if I myself is still breathing.  I have so many whys related to this grief and most painful death i have had to endure. Will i stop asking "why this happened or why that happened or why didn't I do something differently to make the Medical Staff that was monitoring her illness listen to me faster!!  I am a Nurse, i should have done something quicker but I trusted them when they were continuously reassured me.  They were the experts on geriatric patients and how to treat the NOT SO RARE condition of C-Diff!  I am a OB/GYN Nurse so I gave my opinions and OFTEN if I felt something may need to change or maybe a new approach made, especially once she was at the point of ceasing food....I SHOULD HAVE DEMANDED further testing.  Actually, I did demand that something was very bad wrong with my mom and again, they promised that the Dr knew EVERYTHING with her case and this was typical.  It went too far.  I cant get passed the feeling of anger i have that my mom was taken from me, & her grandson....WAY too early, even though I BEGGED!!!  Sometimes, the pain is honest to goodness, more than i think I can handle and i Pray to God that Im not literally grieving myself to death.  The way I feel some days, I do wonder.  I have to keep going for my son.  He is my world.  He was my moms pride and joy as well after losing my only sibling.  my brother does live on in my son for sure.  I have come to the conclusion that i think it may be best if i seek medical help.  I have many health Issues myself and this has only worsened them all.  Insomnia is relentless!  Nightmares!!  I yearn to hear, see, hug my mom.  She was my best friend.  I am so very lost!!!!!!!!!!!!!!!  Have I lost my mind???  I am actually scared sometimes that I have!

 

Thanks for Listening....

God Bless You All,

Steph

[reader]

Dear Steph,

I am so sorry for your pain and sorrow. I hear you. I know its really hard. I hope you will reach out and seek more supports in the community or through church. Have you tried talking to a grief counsellor or joining a support group. I'm sorry your friends have disappointed you. Sadly this is very common and I don't think people mean to drop off but they just don't understand.

I too am mad with the medical care that my dad received. And mad at myself for not doing more or saying more as well. This too is part of our grief process. I know you loved your mom very much and would do anything to bring her back. I know we all do.

I really wanted to let you know you are not alone in your thoughts and feelings.

Like you, I too am hanging on for a child. Still not easy, but I keep trying every day.

Please know we are always here to listen and support each other.

Take care of yourself the best you can. Thinking of you. Sending you hugs.

[memyselfandi]

On 2/12/2018 at 11:38 PM, Steph Rae said:

My Mom passed away 12 days ago from complications resulting from contracting the bacteria clostridium difficile (c-dff, for short) in her colon.  This bacteria is normally caused by long term use of antibiotics for a different infection in your body and the antibiotics end up wiping all of the good bacteria out of your gut.  My mom had not been on antibiotics for almost 3 years! The other only known way of contracting c-diff is "fecal to oral route", meaning someone could have had the bacteria and not know it yet, used the bathroom without using good hygiene, as in... NOT washing their hands, then handing mom a cookie to eat and that simple...c-diff could take over your colon! NOT always are the outcomes as horrible as my poor Mom's. To this day, we know of NO other cases of c-diff anywhere that my mom had been which was only 2 places SO...even how she initially contracted this hideous infection is a mystery! She was diagnosed on December 28th, 2017 and everything went downhill rapidly. I am full of pain, anger, confusion right now. I feel that her death was unnecessary due to the bacteria not being treated aggressively enough despite the fact that she was getting NO better but worse, day by day. Mom had been in a nursing Home for 2 years recovering from a total hip replacement and pneumonia and she was in the initial first stages of dementia but that was minor. I live 2 minutes from the nursing home so mom came home with me weekly. we talked daily. She walked with a walker...she was not wheel chair bound or any limitations of that kind. Despite constantly questioning the staff at the nursing home and asking if her Dr was completely aware of her decline daily.... why mom seemed worse daily, it seemed NO ONE would listen to me! The third week into this illness, they finally granted my request and sent her to the ER. This is where the worse nightmare of my life began. We went from the ER to the next day making decisions about emergency surgery to remove her colon because she was now SEPTIC. She had Toxic Megacolon and her colon was going to rupture at any sec. She was put on life support, rushed to surgery to do a loop bowel and colostomy as well as a illeostomy. Mom had her eyes open for 2 days after surgery, squeezing my fingers, following simple commands and even mouthing "i love you too" every time I told her..."i love you Mom". The next day she coded in front of me, they revived her quickly but nothing improved in the slightest after that. She had multiple strokes, she was paralyzed on her left side, Her blood pressure was so low they had to keep her on a medication just to keep her blood pressure from plummeting. Her kidneys started to shut down. She was so swollen that her body was weeping fluids, through her skin....all of this was from becoming septic from the out of control c-diff. Her temp was 104-105. Her heart rate stayed high and B/P low. I watched my best friend fight this battle for 11 days before making the gut wrenching decision to remove the life support and let her go. The worse position I've ever been in in my life. The doctors gave her 0 chance of survival at this point. At 11:30pm, jan 31st, They turned off the drips, all but the ones to keep her comfortable. Then, They removed the ventilator. for 3 hours and one minute, my mom fought to stay alive. I held her in my arms and assured her that I would be ok, and my son as well, that she could let go and go Home with Jesus. I begged her to not suffer anymore. I could not stand seeing her struggle for every breath. Finally at 2:31 am, she let go. I remained on the pillow beside of her, I still could not bring myself to let go of her. The only peace i have is that she is finally reunited with my only sibling that died when he was 36, My dad, mom's brother, my grand parents.....I'm not a stranger to grief. BUT NO GRIEF HAS EVER FELT LIKE THIS ONE! I still hear her breathing whenever my surroundings are quiet. "the death rattle", that sound tortures me. I could keep writing but I am at a point of "the shakes" now so i will stop for the time. I just know that someone here must know how terrible i feel...i cant be the only one...i may be 41 years old but I will always want my Mama!! I miss you and love you Mama more than the world...until we meet again, save a place for me.

I can't tell you how sorry I am for the loss of your mom...as I send sympathy and many hugs..

When a family member is in a nursing facility..one thinks that everything regarding their health is going to be taken care of...and I soo feel for your situation!!

While nobody seemed to listen at the facility..I'm sure you felt like your hands were tied and it makes me sadder than sad that the facility let it go on as long as they did.

I've been there.

My dad suffered his entire life from frequent Urinary Tract Infections (UTIs). When his temp rose, I'd always demand a urine sample from. The MD at the nursing facility took at look at him and did nothing.

Several days later his temp rose and I finally demanded they take him to the ER. There they found that he not only had Sepsis..but ASPIRATIONAL PNEUMONIA!! I was livid that the staff there..including the MD hadn't caught this sooner!!!

While on IV's full of hard core medication, he was in the hospital for over a week while I slept on a cot by his side. He didn't even know where he was at that point..and staff told me that he was very close to dying. While I rarely left his side except to go home and take a quick shower and let my dogs out..I was never gone more than 45 minutes.

Eventually his numbers started to come back up thankfully...and survived it all!!

I NEVER trusted the nursing facility MD again and made his regular PCP his doctor from there on in!! I took my dad to that Dr..as his opinion was the only one I trusted.

I became careful of his nursing care and made sure that when his temp rose..they immediately called in for lab tests, as there was NO way I was going to ever let this happen again where they missed something. UTIs can go septic so quickly with elderly people and if family doesn't become proactive..one never knows.

There were times I was their worst nightmare!! I'm sure I wasn't liked much at times, but I didn't care..this was my DAD and he deserved again, the best of care!!

At one time he was hospitalized again as his temp was up and I wanted him taken to the ER. He had blood in his urine and I wasn't going to mess around. Tests they took had him admitted and while many of his counts were down..I knew I did the right thing.

Dad was fairly okay then. He ate when I asked him too, yet refused it from others. We'd sit and talk for hours and hours in his room..laughing about soo many memories. Again, being on big time IVS dispensing meds to make him better. Then they took a test regarding his colon and wanted to do a colonoscopy. This meant him drinking this barrel sized thing of fluids in order to clean him out..

I expressed to staff how difficult this might be for my dad..he already had problems swallowing..so their thoughts were to put a tube in his nose and down into his stomach to get the yucky stuff into his stomach. Worst thing about it was they didn't even ask me if I'd approved the colonoscopy yet..just brought the stuff in..

Seriously!??

I asked them who was going to keep that tube in Dad's nose..and their reply was that they'd keep him sedated. Ugh..NO!! My dad was 88 years old at that time and how many time are they going to give him sedatives before he just doesn't come out of them like he used to!??

My second question was, "Who's going to come in every little bit to change his "drawers" when he craps them over and over again!?? It was already a challenge to get a nurse in for 20 minutes when we turned on the light..and oftentimes longer!!

As there was no way in h** I was going to let my dad sit in his own..well you know..if there wasn't going to be a nurse (or a volunteer nurse) that was going to help my dad out..the whole tube down his nose thing was out of the question!!

I guess the doctor that was going to do my dad's Colostomy didn't get the memo and she came walking into the room ready to schedule it the next morning.

Told her I needed a second opinion and called my dad's regular PCP.  He came up and talked to me for about an hour; telling me that a colonoscopy wasn't at all what my dad needed..and he thought it best to leave well enough alone.

Soo many doctors wanted to diagnose my dad with some sort of cancer..something he never wanted them to discover. He just wanted to live his life to the fullest!!

In the end..it was Dementia that took him..and while not being very easy to watch him decline day by day..at least he didn't die in pain.

I'm soo sorry I made this soo long..but I really do understand what you're going through. Had I not had a medical background..

While I send much sympathy and hugs..<3