How "I" would feel vs how a person who is dying feels.

Barb,

Many here have remembered seeing awful sights of their loved ones dying who didn’t have the benefit of hospice.

The worst memory that I have was of my father’s brother who was in the hospital dying with cancer. His pain was so intense that he tried committing suicide with his razor.

I went to see him often. He never married or had children. I was his favorite niece.

I walked into his room early one morning and noticed that he had a bandage on his wrist but I didn’t connect it with a suicide attempt.

The nurse came over to me and said in a loud, rude voice that they had to struggle with him to save his life and she said that he was angry because he wanted to die.

Oh, how I wish that hospice would have been available then. This was many years ago. I was in my 20’s. If hospice would have been available he could have been free from his pain. The hospital staff would not have had to struggle to save his life only for him to continue suffering in his torturous pain.

I walked out into the hallway and cried when the nurse told me what happened. I didn’t want to cry in front of my uncle. I was glad that my mom and dad hadn’t arrived yet. It was a tough thing to see and hear.

My uncle was embarrassed for me to see him like that. Of course, I told him that I completely understood how he felt. I would have given anything for him to have been able to die with dignity.

🍿🥤

Caldinea,

My mom did well on Ativan. Please don’t listen to anyone who says that they wouldn’t give their family members drugs. You have to do what is best for your family member.

Some people take an anti med stance. People on hospice are dying. They deserve to be comfortable. You did the right thing by adding Ativan back to her routine. In fact, add whatever drugs that are needed to keep her calm and comfortable.

I just had to add ativan back to my mom's meds - this is all so brutal. It is nothing like some people must imagine. The moral of the story is if someone is saying

"Help me.. help me.. help me.. help me... help me.. help me"

do it.

she didn't want/like the meds blended before but. yeah. she does now. her tiny nod is a world-shaking yes. the terror must be unbelieveable

Barb,

I totally agree. Who in their right mind wants to suffer needlessly? This goes for any type of ‘end of life’ scenario, not just a health issue.

My uncle never spoke about his days in WW11 very much until later in his life.

When he did open up about his horrific experiences in the war, he said that many of the soldiers, including himself, would have rather died than to suffer horribly.

Many of them saved two bullets in their guns, in case they were captured by the enemy, one for the enemy and if they missed, they used the last bullet for themselves. Hey, I get it. Prisoner of war camp was something no one wanted to see.

Barb, I remember my mom's last week of life. While I wanted her to be conscious so that I could speak with her even though she could not communicate with me, as soon as she started to moan and cry in discomfort my automatic reaction was to run and ask the nurse to give her more morphine.

This is something I've been pondering lately. I've been taking anti inflammatories for my fracture. Obviously not addictive opiates but still regular intake of these aren't ideal either. But DH and I were discussing the actor Jeremy Renner and the fact he's broken 30 bones in his body and most likely is taking a lot of strong pain killers. He probably needs them but there is always that risk of addiction whereas someone who is in end of life care isn't at risk of addiction and therefore should take whatever will make their final hours less painful physically and emotionally.

My dad died after battling Chronic Leukemia for 14 years. He died in the midst of a session of dialysis. He wanted to fight until the very end. He did, and I think my mom's choices were informed by that.

My gma, mom's mother contracted pneumonia when my young brother brought home the flu. She ended up in hospital; because of lack of circulation in one of her legs, she developed gangrene. There were no alternating air mattresses in 1976.

She died a pretty awful death. Hospice would have been a blessing; the VERY Catholic hospital she was in kept her out of pain with whatever meds they were allowed to give. I think hospice would have medicated her better and avoided the last two weeks of putidness that occurred. She needed to be in a sealed casket because of the smell. So many people at her wake were outraged that there wasn't a viewing...

I come by opinions honestly. Feel free to make your own choices, but understand what death actually looks like.

Well said, Barb.

I have sat with 5 people as they have left the world in the last few years, some young, some old, one peaceful, the others very much not.

As others have said, until you watch it, not for a few minutes, but over the course of days and weeks and see the range between peaceful and painful, it is impossible to understand why so many here value hospice services. There are stages and “stuff” that comes with end of life that most people have never heard of… the agitation itself is awful, but I wonder how many people know about the mucus excretion and the gasping for air, etc.?

Anyone who has been lucky enough to watch a quick, peaceful, painless, natural death is very lucky. It is not the norm.

And as you said, the physical can be accompanied by emotional terror, etc. especially in those with dementia. Easing that fear is important as well.

Hospice and pain/anxiety relief is a great gift for which I am thankful.

Also, for the record… I have been on this forum for years and have NEVER seen Barb even come close to *attacking* anyone.

I attended an ‘end of life’ seminar that explained the stages of death.

The topic of hospice was discussed thoroughly. It was strongly encouraged to research different hospice providers in order to find the right fit. If for any reason you aren’t satisfied, you can switch to another provider.

Hospice care was highly recommended for those who were attending as caregivers for our loved ones.

So, if possible attending a seminar like I did is helpful. We are more apt to make better decisions when we have proper information on the subject matter.

By the way, the seminar was held at a Catholic Church by an incredible priest who I greatly admire. He grew up in New York, moved to Chicago for awhile before coming here to Louisiana.

He is officially a retired priest at this point in time. In his youth he attended a Catholic seminary in order to become a priest, but chose a secular university for his degree in psychiatry.

He served on the board of a major hospital in Chicago. He was also the hospital chaplain. He praised nurses and said that often doctors should reign in their egos.

Anyway, I truly appreciated his outlook on life. He said that the church did not ever expect anyone to be a martyr and by all means to take advantage of all medications, psychiatric and painkillers in order to die without suffering. All clergy should take a lesson from this man.

When I was a much younger person (my mom was probably in her 60's at the time) she sat me down and asked me to assure her of one end of life thing.

She asked me to promise that she wouldn't die in pain. My dad had just been diagnosed with Leukemia and she was being treated for breast cancer.

I was relieved that she wasn't doing the "no nursing home" ask, which she knew I'd turn down (her mom lived with us when I was a teen. Destroyed my life. I needed a mother and didn't have one because she was so busy with a 4 year old, another brother ill with osteomyelitis AND passive aggressive gma).

BUT no pain--that I could do!

I realized after mom got dx'ed with MCI that this request logically extended to psychic as well as physical pain. Mom's terrible anxiety and agitation were ONLY eased by meds. A series of gifted geriatric psychiatrist were true angels in guiding me in this journey, which is why I so often recommend a geriatric psychiatrist consult. The broken brain that my mom had was not soothed by our constant presence or reassurance. Only meds helped, and they were effective without her being "drugged"-- she was calm and happy.

So many posts here about "I don't want my parent to be drugged", I want my LO to die on God's time", Hospice killed my parent"...

I get bent out of shape with folks not taking the feelings, both physical and psychological into account, if they have been expressed in better times. I believe ardently in good pain relief at the end of life.

Take this post as you see fit. It is one person's opinion.

When mom was in rehab one time, there was this poor woman who was moaning 24/7 in terrible pain, quite loudly. When I asked the nurse what was going on, she said they were unable to get in contact with her family to authorize hospice comfort care. The staff had called and left countless messages that this poor woman was in agony, but apparently, the family didn't care. Very sad situation that was, to say the least.

Barb,

You explained this so very well that I don’t know what else I could possibly add to this thread, other than, thank you for this post.

I couldn’t have watched my mom or brother suffer needlessly. I am so very grateful that hospice was available for them!

Oh wait, I can add one thing. As Alva says, “Give me the good stuff!”

I had a front row seat to a woman dying without the benefit of hospice. She screamed hour after hour for a week in excruciating pain. When her family brought hospice on board she was kept comfortable through sedation and pain management. It was a blessed relief for her. The absolute terror in her eyes as she screamed out in pain for a week was utterly heart breaking and so unnecessary.

I don't imagine anyone could fathom what this is like if they have never witnessed it with their own eyes.

I honestly thought her family was withholding hospice to punish her for what they thought she did wrong. This was a very sad end to a long, drawn out medical journey.

I have had Hospice involved in the end of life care with four family members including my dad. It was a benefit in every case. My dad was in the hospital on Hospice for many weeks. We were all pleased with the care and comfort he received. I would not hesitate to use hospice again for myself or any other loved one. I live everyday with pain and medical problems and when it comes to end of my life, I hope Hospice will be part of the process.

I think Barb's discussion is a good one. I see nothing hurtful or threatening in this discussion as suggested by another person.

This is a topic that comes up time and time again on the forum and I think that bringing it forward for discussion is better than starting a war of words on somebody's thread. Like Alva I didn't see the one that has prompted this post because I've learned to avoid threads that are apt to become toxic.

And I'll take a moment here to state what I've said before - my mom was stoned out of her mind for her final few days and for that I will be eternally grateful.

Well said!
🫶🏻🫶🏻🫶🏻

Well said!

👏👏🏼👏🏾👏🏻

I think Barb that family members don't always understand Hospice. We talk about it all the time here. What the body shutting down means, why the Morphine and anxiety meds. Thats why I recommend that a family member be present when Hospice is explained. So everyone understands how it works. It always gets me when someone says "hospice hastened my LOs death" They are on Hospice because they are dying. "They stopped feeding by LO" no ur LOs body was shutting down.

Yes and you can't compare temporary pain with the excruciating pain some has from cancer. The chronic pain people have everyday of their lives. Me, I hadca bulging disk and told my husband I don't know how people deal with pain every day of their life. Mine went away with steroids and pain killers and a heating bag.

Your wise words are well taken for certain.
I think there is a tremendous fear of death and avoidance of the subject in this country, as well as ignorance about Hospice, and about pain relief. One must witness what end of life can be without hospice in order to know that in the end they would do anything to prevent such pain and confusion for one they love. My nursing career began before Hospice. I won't ever forget the deaths I witnessed.
As a nurse I was also witness to what happens when people refuse to acknowledge that death is on the doorstep. We often had to do CPR on the fragile birdcage chests of the elderly frail. I often wished family had to witness it, had to hear or feel the cracking of fragile bones.
It's sad, but as well as denial we in the US often want to force our own life choices upon others.
I must have missed the posts you mention, and happily so. I haven't recently seen people ranting on about end of life care, but I may be avoiding them.