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Not a peaceful death.
redleaf90
Posted: Wednesday, June 20, 2018 5:39 PM
Joined: 10/1/2015
Posts: 32


My sweet and brilliant father passed away on May 10th.  He was in a nursing home after a 3 year decline with this horrible disease.  I wish I could say he passed peacefully....but he did not.  For two days he would violently shake on and off, claw at his blankets and strain to look at something.  When his eyes were open (only a few times) they would stare into space.  The first day of his decline he gripped my hand with herculean strength.  The second day he had no response to me.  The worst of the worst was the 8 hours of listening to the death rattle.  He then went to short shallow breaths, which then followed up with brown fluid coming from his mouth.  He took his last breath shortly after the fluid.  I was holding his hand.  He was on morphine those last two days, was told by hospice and nursing staff that he was comfortable but I cannot get over how he died.  

In addition, only the previous day he was wheeling himself around (very agitated) and I gave the OK for the initial dose of morphine thinking he may be in pain.  He had dinner that night and slept peacefully.  The next morning I saw him and he was totally unresponsive.  How did he go from eating dinner to totally unresponsive in only a few short hours?  Did the morphine hurt him?  I am tormented by these questions.  


dolor
Posted: Wednesday, June 20, 2018 8:42 PM
Joined: 11/9/2017
Posts: 308


Dear redleaf,

I'm so sorry for the loss of your wonderful father. 

I see you are caught in the awful trauma of past medication questioning. I have been--and still am, but from a different class of drug. 

I hope I can ease your mind a bit. In my opinion, of course you did the right thing by making your father's last days painfree!!

Let me ask you, have you ever *tried* morphine? Oxycodone? Oxy is actually twice as strong as the equivalent dose of morphine. My mom was on morphine for months, as are many hospice patients. 

You probably already know about this, but just in case-have you read or heard about terminal agitation? My mom experienced it. It can actually appear as if the person has rallied--and people can even rally shortly before even without TA--my mom ate for the first time in weeks, smiled, talked a bit, listened to music...My brothers thought she was so improved that they returned home (across the country) despite my asking them to stay--a few days before she passed. 

Her good mood passed into severe agitation, with rattling breath, stomping her feet, staring wide eyed out the window and crying "nonono..."

Not a peaceful death. Gut wrenching. It may tend to haunt you for a while. I'm a year and a month out and it still haunts me--but not as often. Counseling, medication, and support helps. 

Hugs,

Susanne


dolor
Posted: Wednesday, June 20, 2018 9:06 PM
Joined: 11/9/2017
Posts: 308


Did I ever get to my main point? I'm a little exhausted--always. 

I wonder if your father had terminal agitation. There is this burst of energy--and appetite--they get. It's disappointing and shocking and distressing--I thought I had more time...

The morphine is also used by hospices to help patients breathe easier 


Rockym
Posted: Wednesday, June 20, 2018 9:53 PM
Joined: 1/17/2016
Posts: 890


My mom passed on May 12.  She seemed fine until a couple a weeks before when she had a 100 fever.  I didn't think it was a big deal.  Her community sort of guilted me and I took mom to the ER.  Turns out she was in critical condition.  Needed 3 pints of blood and antibiotics from some wild infection.  Mom really didn't seem ill.

Turns out, after a CT, mom had some sort of lung cancer and was bleeding internally.  The hospital fixed her up and I took her back to her community with Hospice care.  They pushed for morphine, but my mom said she wasn't in pain.  Mom's breathing was shallow and they got her oxygen.  Again, they were pushing for morphine and I settled for some oxy with Tylenol.  It was the following day that they took away the Tylenol and added predisone.  Mom just took a nose dive at that point.  I guess what I am saying is that I brought her home and she even said, "you know I'm dying?"  I told her I had her back and that all was okay.  I played her music, brought her chocolates and made her as comfortable as possible.

Mom was alive for 6 days after the hospital stay.  I know Hospice wants their patients comfortable, but I felt like I had to continuously stand my ground.  Mom made it clear to me each day that she wasn't in pain.  On day 6, she spiked a fever (they took away her Tylenol the day before).  When I tried to give her liquid Tylenol, she wasn't able to swallow.  Mom was making the death rattle and I was so scared.  I thought I caused it.  I never had time to read the Hospice book so I didn't know what was coming.

I held mom's hand and cried very hard for the first time and at that moment, mom was gone.  Six days.  EVERYTHING reminds me of her right now.  I am constantly thinking of mom-isms.  She had many witty sayings.  My brother died over 30 years ago and my father about 15.  Now with mom gone, it just me.  I have a husband and two teenagers, but when there is no immediate family left it just feels empty.


redleaf90
Posted: Friday, June 22, 2018 3:20 PM
Joined: 10/1/2015
Posts: 32


Thank you Susanne....your response helped me a lot.  I've asked many people who have lost someone if they experienced what I did.  Not many have.  It helps me to know I am not the only one who witnessed a not very peaceful passing.  Not only dealing with the trauma of that but I also miss him so much!
redleaf90
Posted: Friday, June 22, 2018 3:23 PM
Joined: 10/1/2015
Posts: 32


Rockym - I so know how you feel.  I am totally lost without my Dad.  I spent every day for 3 years worrying, fretting, caring for him.  Once he was gone...it's like a door slammed shut and I can't go through it any more.  I still have my mom, but sadly she also has Alzheimer's.  She is in the beginning stages however.  

I kept some of my Dad's clothes to smell (is that weird?) so I can still feel connected to him.  The void is huge, the loss is deep and the pain is real.  

Hugs to you.


dolor
Posted: Saturday, June 23, 2018 9:20 AM
Joined: 11/9/2017
Posts: 308


I'm sure you do miss him redleaf! I don't think I'd be getting out of bed (wait, I'm there now) without bereavement counseling. Like I told another poster, the exhaustion that the sadness and missing causes is deep and profound. I also recommend getting to your own doctor for whatever they will give you unless you have aversions to that. 

A couple things: you talked to a few people, well, their response is odd. But one of my brothers is a doctor for several hospices and long term care centers--I will be circumspect out of respect for other readers and of course you, but often patients and families are assisted in medical settings to make passing easier, and if that is not possible, to make it seem easier. We can talk more about that a little later if you're curious, when you're feeling better.

I'm really sorry to hear about your mom's symptoms. That is too much. Do you have siblings? Although in reality, they can hinder more than they can help, especially the ones with the MDs. Those are good for telling you what not to believe  

Hugs

 

 

 


redleaf90
Posted: Tuesday, June 26, 2018 7:18 PM
Joined: 10/1/2015
Posts: 32


Thank you Susanne!  I do see a counselor regularly which helps, but she is not specifically for bereavement.  I think I might find a group that specializes in bereavement.  Part of me thinks....oh I should just suck it up.  People die all the time and are witnesses to horrible deaths, don't be such a baby.  But then I think....dear God that was just horrible to witness and it broke my heart.  

I am so conflicted and turned upside down.  I'm so lucky to have been able to be with him.  I've brought three beautiful babies into this world and to have the honor of holding my father's hand as he left...not many people get to experience that.  But it was so HARD and so SAD.  And now I feel isolated.  

I have siblings and they are helpful (some more than others) but the bulk of it is on me.  My mom is a broken record right now....reviews my Dad's last two days in excruciating detail over and over and over.  I feel terrible for her as she is stuck in his dying...and it's horrible for me as I have to re-live it with her again and again.  Just sucks all around but it helps to know there are others who have experienced this too.  Thank you!


dolor
Posted: Wednesday, June 27, 2018 4:46 PM
Joined: 11/9/2017
Posts: 308


Hi Redleaf,

 I've been wondering how you have been doing.

 "Just suck it up?" Oh the h**l with that. Pain is the price that love demands.

You are right we should bear in mind the tragedies and horrors others have endured. But we aren't in their minds to know their traumas and aftereffects either.

We have lost a part of ourselves.

I read once that bereavement counselors were preferable to "regular" by far, but that isn't always an option. My current counselor as I transition from Hospice counselor is not bereavement specific, and so far I have found her helpful. I too will try to find a group though.

Is there any help for your mom that you can facilitate?

It took a good 10-11 months for me to stop constantly reliving that last day. I still slip back there sometimes.

Hugs!

 

 


redleaf90
Posted: Thursday, June 28, 2018 6:08 PM
Joined: 10/1/2015
Posts: 32


Thank you for asking.  I'm doing ok....some days are better than others.  I think talking to you has helped a lot.  Having someone understand this pain and knowing I am not the only one who experienced a "not peaceful death" helps.  A lot.  I asked a friend who's mother passed from cancer about her last days/moments.  She told me that her mother had shallow breaths, drew one last big breath and died.  No agitation, twitching, moaning, death rattle etc.  I realized that what I went through was really traumatic.  And I need to embrace that and wade through the emotions.  As hard as that is.  

I am lucky my mom is in an AL facility and has a lot of support and help.  I plan on talking to the social worker there about helping her with her grief.  Maybe bring her to a support group as well.   It's interesting because even though she is forgetful and repeats constantly, it's great to be with her because I can talk about him all I want!  Sometimes I think my loving family says "ok, that's enough of this grief stuff."   So I keep a lot in.  But not when I am with my mom!

Thank you for your help!  God Bless!


dolor
Posted: Saturday, June 30, 2018 1:40 PM
Joined: 11/9/2017
Posts: 308


I'm so glad to be of any help! And I think it's a great idea to talk to the social worker about your mom. There may come a time where her forgetfulness comes as a blessing to her. 

For you it will not be so easy. Many people do fall into or, if hospitalized, are induced into a coma before death, this coma makes passing appear, and possibly be, easier. 

My oldest brother, who was not present, wrote my mom's obituary and used the standard "passed peacefully." He sent it to the rest of the family prior to publishing and I didn't have the heart to contest it. I was talking about it with my other brother, the hospice dr., and among a lot of other things he said "death is messy" meaning it isn't always a gentle stepping over that we would like. But--patients can be kept comfortable with administration of drugs like morphine even if they seem noisy and "messy." It's good stuff. 

For a patient's perspective, I'd recommend "Life After Life" by Dr. Raymond Moody. I can say with certainty and a lot of backup that he is, well, right about something. 


Skittles412
Posted: Thursday, July 5, 2018 7:00 AM
Joined: 5/14/2018
Posts: 224


Hello everyone:

I lost my Mom on June 6th and I am just reeling with grief.  I cry at the drop of a hat and I have zero control over it.  I miss her fiercely.  

I wanted to tell you what my mom's last days were like.When it got so difficult for her to walk and/or hold her head up we called hospice. First of all we were fortunate enough to be able to care for mom at her home with my Dad and with a bunch of my siblings and hospice pitching in. When hospice came in they got my mother a hospital bed, then came the Ativan, then the Tramadol and then came the morphine. 10 days after my mother was confined to the hospital bed she passed away. Her decline happened so fast it was really shocking to all of us.  I often wonder if the morphine helped her along in the dying process.  I mean I know she would have succumbed to it eventually anyway but did it actually contribute to her demise? (I'd be interested to know anyone's thoughts on that). It was as though she lost her final bit of independence (her ability to sit in her chair and at least with help, walk to and from the bathroom) that she lost her will to go on. It happened so fast that there had to be some other factor that contributed to her rapid decline.

The day she died she did get the death rattle slightly but we just thought it was her regular wheezing and gave her the meds to help clear her air passage. The rattle never left. My mom passed at 2:11 PM on June 6th, 2018. My life forever changed in that moment, my heart is completely broken but my love for her is undying. 

Sorry if my thoughts were all over the place, but I'm just trying to put it all into words somehow.  By actually typing this and putting it out there; maybe it will help me along in my grieving process.  I am still in sort of shock from it all, disbelieving that she is gone.  I miss my mom so much.

Thank you for listening, I wish you all peace

Kat

 


dolor
Posted: Thursday, July 5, 2018 1:34 PM
Joined: 11/9/2017
Posts: 308


Oh Kat I am so so so sorry for your loss. I recognize that tomorrow will be your one month anniversary and it is going to be painful. It will be one of the firsts in the year of firsts.

I know you are broken hearted. There really isn't any escape from what you are feeling. The only words of solace I can offer you are the ones I have offered to others: keep your ears and eyes open, take note of any dreams that you may remember. There will be signs. Your mother will not abandon you. xoxo

I would also recommend bereavement counseling. Your hospice may offer it at no charge. There may be groups in your area as well. And anti-depressants combined with anti-anxiety medications if you are not adverse to that. I could not go anywhere without a low dose of xanax or ativan. I am also taking lexapro.

As to your mom's medicines, was she given anything else at all, and are you sure of that? Was she given morphine at the same time as tramadol? Had she ever had opiates before? Do you know the dose she was given?

Opiates can be overdosed on, as we often hear on the news. They lower the oxygen supply in the blood. Trained medical personnel should obviously know the safe dosage. My mom was on both ativan and morphine for months. It was an anti-psychotic, haldol, that sped up her passing. That is why I ask if your mom had any other medications.

Have you had any experience with opiates? I have taken a variety of opiates due to a traumatic neck and shoulders injury in the past. Morphine is relaxing and can make you sleep. It is a very good, restful and secure, painless feeling, let me assure you of that, at least.

I am wishing you the best. I'd love to say it gets easier, but really, it simply becomes...well, you can get things done without crying all the time.

Hugs.


Skittles412
Posted: Thursday, July 5, 2018 2:04 PM
Joined: 5/14/2018
Posts: 224


Thank you so much dolor.  This is so hard to go through.  I will seek bereavement counseling because I'm not handling this well.

Mom was also taking Halidol too sorry I forgot that one.  Tramadol was used before the morphine came into the picture she didn't take them both together. It just seemed like once she got the hospital bed and started taking the meds, she left us so quickly. I'm glad she didn't suffer too badly though.  

Thank you for responding to me; I appreciate your response so much.

Kat


dolor
Posted: Thursday, July 5, 2018 2:21 PM
Joined: 11/9/2017
Posts: 308


Dear Kat,

Of COURSE you aren't handling this well, why should you? It's hell and it's very early for you. Yes please do seek counseling as soon as possible. Ideally a bereavement specialist. I started two weeks after my mother passed. I was a mess. Still am, just less of one.

Think about meds if you are not adverse. If you have a primary and call and say you had a death in family they will get you in quickly. Or don't turn over the Ativan...I found meds helped with my anger and irritability.

Be very careful driving. Go slow. I found that everyone and everything was moving waaaay too fast for me. Refuse to hurry for anything or anyone. If you are late for something, so what. If you rush you will get anxiety and lose your phone or something.

I can't see why your mom was given Haldol. When I started counseling, my counselor was the Hospice counseling manager. I let her know in no uncertain terms that I believed the Haldol was responsible for pushing my mom "over" and should not have been prescribed. Because she knew that my eldest brother was a Fed, and my other brother a hospice doctor, I have no doubt the message was passed on.

In my humble opinion, it's not a good time for you to dwell on the effects of the medicine--yet. Just, if you counsel with hospice or communicate with them again, let them have it. Time now to be gentle with yourself, and heal. Later look into these things. There is time enough.

Thinking of you. Watch for your special signs, your mom loves you.

You are not alone.


Skittles412
Posted: Thursday, July 5, 2018 2:58 PM
Joined: 5/14/2018
Posts: 224


Thank you so much dolor; 

I'll take your advice and put my healing front and center now.  I actually already take anti anxiety meds. Since my mom died, doctor gave me Ativan fo the days it gets too much for me. Thank you for your responses; I appreciate them more than you know.

Kat


redleaf90
Posted: Saturday, July 7, 2018 7:03 PM
Joined: 10/1/2015
Posts: 32


Dear Kat - I am so sorry for the loss of your beloved mother.  I truly understand your pain right now.  It's overwhelming at times, bewildering and sometimes downright scary.  I am two months out from my Dad's death and I can say that I am a bit better now than I was a month out.  I am still struggling but I am feeling a bit calmer now.  Some days I am so sad I think my heart will break in half, others I am furiously angry he had this horrible disease, and some I smile and laugh thinking of very good memories. I find myself thinking a lot of his death and what transpired.  Even though it's brutal to go over in my mind, I allow myself to go "there" when I feel strong enough to deal.  On other days...when I don't feel strong enough, I re-direct my thinking to a happy memory with him.  It's a truly a rollercoaster.  I think also of how incredibly unhappy and how much he was suffering his last month and it's the one thing that makes me feel a bit better knowing he is no longer suffering so much.   I agree with Susanne/dolor....see your doctor and get counseling.  Both will help a lot and will help you sift through all of this.    Hugs and prayers to you.  <3
Skittles412
Posted: Monday, July 9, 2018 7:21 AM
Joined: 5/14/2018
Posts: 224


Dear Redleaf:

Thank you for your message; I really appreciate you reaching out.  I am very sorry for the loss of your dad.  None of this is easy for any of us. My mom was 86 as well so we have that in common too I'm starting bereavement therapy this week.  I'm looking forward to it and am kind of nervous too.  Whenever I go "there" I just cry uncontrollably.  Let's see if they can help me keep it together. I'm sending you hugs and strength my friend. 

-Kat


KML
Posted: Monday, July 9, 2018 2:13 PM
Joined: 11/30/2011
Posts: 2105


My father had terminal agitation and his last days were not peaceful or comfortable for him.  I had spent years trying to provide him with good care, comfort and safety and in the end, he had a very difficult passing.  That feeling stayed with me for a long time.  I had to tell myself, I did everything I could for him, I made the best choices I could at the time of his stage of his care.  It took me a very long while for those last few days to soften for me.  The first year after his death was very difficult for me.

The best you can do at this point is to talk with someone, a grief counselor would be very helpful.  I found a book called on On Grief and Grieving, and that helped me, too.

He has peace now, free from this devastating disease.  I hope you will find peace, too, and one day you will remember the better times and the good memories of your dad will come to the front and stand out again, to you.


NancyLovesLife
Posted: Monday, July 9, 2018 5:53 PM
Joined: 7/9/2018
Posts: 2


I started to give away my mom's clothes soon after she died, then read a book about grief that said, Keep those clothes for a while! Of course you will want to sit with them and smell them...

So I did save some, and glad I did. Just thought you might like to know it's something experts who write books actually urge us to do! (Sorry, I don't remember the name of the book.)


MPSunshine
Posted: Monday, July 9, 2018 6:02 PM
Joined: 5/21/2016
Posts: 1954


My mom’s death was not peaceful. She was reaching for someone with both her hands. Her breathing rattled terribly at the end. I reassured her that she was joining her husband of many years, my dear dad, and that it was okay. It will be a month my mom left as of this Saturday. I miss her everyday. I also, at the very same time, am glad she is suffering no longer.
Skittles412
Posted: Tuesday, July 10, 2018 7:02 AM
Joined: 5/14/2018
Posts: 224


MPSunshine wrote:
My mom’s death was not peaceful. She was reaching for someone with both her hands. Her breathing rattled terribly at the end. I reassured her that she was joining her husband of many years, my dear dad, and that it was okay. It will be a month my mom left as of this Saturday. I miss her everyday. I also, at the very same time, am glad she is suffering no longer.
Hello MPSunshine.  My mother was also reaching out with both arms shortly before she left us. I truly believe that her mother was waiting for her and my mom was reaching to hold her hands. She too had the death rattle and that was hard to hear but we had her on a steady dose of morphine so I like to think that she wasn't in any pain. My mother died June 6th so it's only been a little over a month.  It's the hardest thing ever.  I'm trying to replace my sadness with good memories but I know it's going to take a while for that to be possible.  I wish you peace and many great memories of your mother. Sending hugs and strength to you.  
xoxoxo -Kat

MPSunshine
Posted: Tuesday, July 10, 2018 7:42 AM
Joined: 5/21/2016
Posts: 1954


Hi, Kat, My mom was perfectly fine (for her) at her medical check up in April. She was walking with a walker and attending her club weekdays. She had friends there. She declined rapidly from early May to mid-June. There was a significant event that caused her decline (hypothesis is that it was a stroke which then led to crumbling spine) and I and many in my mom's sphere are still reeling from the shock of her death. One odd result of the stroke was that my mom regained logical speech, full spectrum, and was able to converse normally for the full month and a half (she had previously had a diagnosis of primary progressive aphasia, a form of FTD). She couldn't move without pain and couldn't bear weight, but she could speak normally. It was the most amazing thing. It was like her brain waves were completely rearranged. The gerontologists and other doctors and certainly the hospice personnel seem to have seen it all and to them all of it is nothing new. Some of the statements my mom made during this time I still consider to be the most precious of gifts she was able to give.
Skittles412
Posted: Tuesday, July 10, 2018 7:57 AM
Joined: 5/14/2018
Posts: 224


Hello MP: You got to have meaningful conversations with her before she passed and although her passing was shocking; you got a gift before she left you.  I'm so happy you had that. Weirdly enough my mother's dementia actually brought us closer. My mother always had an emotional wall up (and I did too as a result). We both changed during her illness.  We held hands, we said I love you so much more and we just connected on a real level that meant so much to me.  Although inevitably the disease took her from us; it also brought us closer and I will be forever grateful for that.  This grief is just more than I can bear though; I can't wait to get to a more tolerable point.  I wish you peace MP! xoxoxo

-Kat


Rockym
Posted: Tuesday, July 10, 2018 3:29 PM
Joined: 1/17/2016
Posts: 890


Kat, I posted somewhere else to you today.  We must both be hanging out here a little.  What you said to MP is exactly what happened with my mom and I.  We were okay, but not as close as some.  We lived a state apart and when mom was healthy, the phone was the best connection for us.  Sometime, about 5 years ago, it seemed she needed help.  I first took over her finances and she came to visit a bit more.  When she was here, she would follow me around in a way that drove us all crazy.  Little did I know that was a symptom of dementia back then.  We just thought she was not being respectful of privacy.  There was no door knocks, just walking in even if the door was closed.

When I moved my mom here, three years ago, we looked at ALs together and I sort of came to grips with what was happening.  We used to go for sushi and saki every Friday and she would always repeat, "Isn't it great we like the same things?" and I would always say yes.  I also made sure to always say I love you since you really don't know what tomorrow brings.  Mom started to say, "I love you more."  I think her mother used to say that.

Either way, people sometimes say wow you really worked hard, it must have been tough, etc. and I recall this last year thinking that this is just a few years out of my life.  Mom spent so many years raising me and putting up with a 70s wild child that it was least I could do.  Now I am blessed with three years of fond memories (the rough stuff fades fast) and although I cry often, I am at peace.  I hope the same for anyone else in the Lost Someone threads.