Parenting
Sorry, this is really morbid, but with terminal illness, what is the end like?
I've never been so closely involved with someone who is dying...I've never been present when someone passed away, and I haven't closely watched the process. I find myself wondering what it's going to be like when the time gets closer for my dad. I know it's different with different illnesses, or perhaps different ages. But I'm still curious...I don't mean this to seem really morbid, but sometimes it just really grips me and I can't seem to get it out of my mind right now. I don't know if it will help me at all to know, but not knowing what it's going to be like is kind of bothering me.
I tried looking around the local hospice website but didn't really find anything.
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Re: Sorry, this is really morbid, but with terminal illness, what is the end like?
IME, they get weaker and weaker until they can no longer get out of bed. When that happens, it's just more of the same. There are good days, and bad days. Right before they die (like a couple weeks before), they have a week long period where they (you) think they are going to be ok. That it's not really happening. It's like the calm before the storm, so to speak. In reality, it means the end is near.
The last hours are tough. Labored breathing. Pretty motionless. They call it the "death rattle" as it's a pretty specific breathing noise. I can't describe it. And, at least in the case of Joe's pop, he died. But then his body took a few more breaths (not consistent but probably 2 more after being pronounced dead).
Of course, this has just been IME (and that has been limited to two people).
(((HUGS)))
I am so so so sorry you even have to think about this.
I have been present for 2 deaths. Both every different but not as dramatic as I envisioned it in my head. One was natural and one was taken of life support. In the end it was rather peaceful in a macabre sort of way.
~Lisa
Mum to Owen and Lucas
Everything she said.
When my grandpa was passing away the whole family get around him and told him it was OK to let go, we all loved him and we wanted him to go to a better place, after we told him that he took he last breath. It seemed like he was hanging on until we told him it was OK to let go, we didn't want to see him suffer anymore.
(((hugs)))
DD 1/29/07 -
Taken from my hospice notes:
Normal emotional/spiritual/mental symptoms of death:
Withdrawl- person may seem unresponsive, withdrawn, or in a comatose state. Beginning of "letting go."
Vision-like experience: may speak or claim to have spoken to people who have already died, see places not presently accessible or visible to you. Does not indicate a hallucination or drug reaction. Do not contradict, explain away, belittle or argue.
Restlessness- may perform repetitive and restless tasks.
Fluid and food decrease- when a person wants little or no food/fluid it may indicate that the body is preparing for its final shutdown. Do not try to force food or liquid.
Decreased socialization- person may want to be with very few or only one person.
Unusual communication- person may make seemingly out of character statements or requests.
Physical signs and symptoms of approaching death:
1. More time sleeping
2. Decreased food and drink
3. May become increasingly confused about time, place, identity of people.
4. May lose control of bowels/bladder
5. May notice change in breathing patterns, irregular pace with 10-45 second periods of no breathing.
6. Decreased urine output
7. Elevated temperature
8. As patients become weaker, they are less able to handle their own secretions. These may collect in the back of the throat and cause what some people call "the death rattle." This is usually more distressing to the family than the patient.
9. Involuntary movements and moaning. Pain is not usually an expected problem, by that point it is typically well under control before the dying process begins.
10. Person may lose awareness to the point of being semi-comatose. When a person is in a coma and not responding to stimulus we still always assume he can hear. Even if the person does not respond continue to touch and talk to him. Avoid saying anything you would not want him to hear.
11. As death approaches the circulation slows, the hands and feet become cold and possibly blue. You may see discoloration at the knees and the underside of the body when turned.
IME, what Cleo posted is very accurate. I've lost several loved ones - grandfathers, MIL, stepMIL - to cancer and the end is always like that. MIL hung on for a over a freaking week, comatose, with no food or water - no idea what she was waiting for but we blame her dumb husband because he kept whispering to her about, "You keep fighting, Pam. Give 'em hell to the end. Don't you quit." Again, IME, it's very important to tell them you love them and it's ok to go.
I'm literally watching my closest aunt in her final stages of cancer right now. She's already lost all movement in her lower body (and thus control of bodily functions), has started to refuse food, and is starting to seem disoriented during her "lucid" periods. This information is literally making me want to throw up (as does thinking about what's inevitably coming in the coming weeks or possibly sooner), but I also think I need to know some of what to expect.
My heart aches for anyone who's ever had to watch the suffering and passing of a loved one... I never truly grasped the magnitude of the experience 'til now.
Alex (11/14/06) and Nate (5/25/10)
"Want what you have, do what you can, be who you are." - Rev. Forrest Church
I'm sorry. I really debated whether to post such clinical information at all. I hope it wasn't too much.
DH read this book on the recommendation of a friend of mine and found it helpful when his mom was dying.
Living at the End of Life: A Hospice Nurse Addresses the Most Common Questions by Karen Whitley Bell in Books
Sorry for the font - I c&P and am too lazy to fix it
My Dad was on a ventilator for a few days before dying, he was not in hospice but I knew he was not going to get better. He woke up the day before, I did not see him but my brother, SIL and Mom were there the time he was awake (it was his birthday), he could not talk b/c he was on the vent but he could communicate a little. The next day his body went into full system failure like you see on Greys Anatomy, is kidney function slowed and we took him off the blood pressure meds that were regulating his blood pressure and it took less than an hour but that could have been very varied.
All I know is that I regret that I did not talk to him about death, he was still trying to fight his illnesses and infections and told the doctors to try everything and he did not want to just be made comfortable and it made it hard for me to have the conversation I wanted b/c how could I tell him it was ok if he did not want to fight anymore and that we would take care of Mom. But yet I think he was only fighting b/c of us, at one point (he was in between the hospital and rehab for 6 months before dying) he told me everything would be ok, I thought he was dillussional (sp) but afterwards I realized he probably was just trying to tell me it would be ok. I just really wish I told him it was ok to let go.
I had a nice visit with my uncle the day before he died (kidney failure). He was resting comfortably, thin, in full control of his mental faculties. We chatted for a while about family, went over some of the fun times. I told him that he had been a bright light in my life and that I was grateful for all the time we had spent together. He hoped that when his time came (he expected less than a week) that it would be a comfortable passing.
My best friend who died of cancer was in and out of hospital for 6 months going through rounds of chemo and radiation. I saw her less than a week before she died, we had hoped she'd be well enough to attend a bridal shower that Saturday. She died the Friday night. She got some kind of infection and it took her very quickly; the medical team worked very hard to keep her alive but her organs started shutting down.
My grandma (not my real grandma but still grandma to me) was elderly, in her 90s, and had been in a nursing home for some time. She really didn't seem much different the week she died but she called for a priest two or three days before she passed to receive last rites. After she received that blessing she rallied, but then literally slipped away (according to my mom who was present).
I am sorry you even have to think about this.
So sorry if I made anyone feel like they weren't being helpful... quite the contrary. Though very hard to read, the information in this thread is something I need to confront. The wanting-to-throw-up feeling comes from knowing I have to say goodbye very soon. This is all so sudden and out of the realm of what I ever dreamed possible... I feel so out-of-control and helpless that, like you, I think I need to have an idea of what to expect.
Like I said before, I hate than any one has to watch a loved one suffer... it f-ing sucks. Thoughts and prayers to you, ghm, and anyone else going through this s#it...
I was with my MIL when she passed away and had the same info that Cleo posted b/c we were using Hospice (who are so so so amazing, BTW. They made sure her pain was managed and treated her with such dignity. I can't say enough good things about Hospice).
My MIL had breast cancer for 7 years before she died, and what was most shocking to me was how fast it happened at the end. I took her to a doctor's appointment on a Friday. On Saturday she slept 18 hours. Sunday was the same. By Monday she stopped eating. Hospice came on Tuesday and when we asked how much longer they said "days, not weeks."
She passed away early Thursday morning. We were with her 24/7 that whole time and she couldn't speak at the end even though she was very alert, which was different than she'd been the previous few days. We knew what she wanted to say and we said what we wanted to say.
I'm sorry this is happening. It's very hard. But I think there is some comfort to be found in knowing that you will be able to be there and say goodbye.
When my mom and I arrived, he was on a bed with an O2 mask. (It was clear and covered his entire face...I'd never seen one before). He didn't want any intervention except pain meds. He was in a lot of pain when we arrived and flopped around on the bed quite a bit until either the meds took over or he was less conscious--I'm not sure which. We watched him for several hours until his breathing became less and less. There were a few times we thought it was over, but he took another breath or two. The nurse came in to turn the monitors off so that we didn't have to listen to the beeping. Then, he took his last breath and he was just...gone. That side of my family isn't demonstrative with affection at all, so nobody really said anything. I kept thinking I should hold his hand, but I never did (and I still regret that, even though I know he wouldn't have faulted me for not doing it.) It's tough. I'm tearing up now remembering it, and it was five years ago. I adored him.
((hugs)) to you.
Everyone's actual experience will be different. For me and my Dad it was not quite the same as what others have described.
Dad had leukemia and developed pneumonia and an infection somewhere in his body which in most leukemia patients is the beginning of the end as the body uses all of it's energy to fight the pneumonia and infection and seems to forget about taking care of the other body functions. On a Saturday evening Dad seemed to lose all of his energy and by Sunday morning his breathing was so labored that he asked to go to the hospital. He also developed a fever overnight which meant an immediate trip to the hospital. He was rushed to the ER with very labored breathing and a super high heart rate but severely low blood pressure. The docs shocked his heart to try to get it to slow down to a normal rate which worked for a short period and gave dad somewhat of a break in having to breath so hard. Eventually the heart rate and bp went back to super high and super low. Later that Sunday evening with still little to no releif the docs gave Dad the option to be intubated so that the machines could breath for him. He gladly accepted. From that point on he was sedated to the point that he was unresponsive but his body and brain functions were normal. With the infection still looming and the fever not coming down to comfortable levels it was only a matter of time before his kidney function would be affected. My aunt stayed with him at the hospital while me, mom and DH went home to shower and try to get some rest. About 2:00 am mom called to check on dad and my aunt said that we may want to come in. By this time the docs were discussing dialysis because his kidneys were not working anymore. Around 4:45am he coded and all the docs were trying CPR and pushing meds. Mom held his hand and told him that he could let go and she was very proud of him and how hard he fought but that he didn't have to fight anymore. At 4:56am Monday morning the doctors stopped cpr and the loud streaming beep of the heart machine started. That is a sound that you will never forget. The doctors left the room, some with tears in their eyes. My aunt who is a nurse turned the heart monitor off to stop the beeping. Mom and I held each other and Dad's hand. His color started to fade a little within just a few mintutes. Because of the leukemia he had a little grey yellow color but he turned to more of a grey color. I'm assuming because of the lack of blood flow. For Dad, since he was intubated there was no "one last breath" type of scenario, it was a little more like what you see on TV when someone codes then they just stop trying to bring them back once it's evident that their efforts are not working.
I'm not sure which scenario I would prefer, the waiting and watching for that one last breath without being hooked up to machines or the more dramatic like scene that I had. Either way, it is both the most horrible thing and the most relieving thing you can experience. On the one hand your dad has died but on the other you know there is no more pain, no more worry and wondering when it will happen. It just happens. The relief part is much harder to accept but it does eventually come around.
Sorry, that turned into a long novel! Again, I am soo sorry you are going through this and there are no words that can comfort you enough through this. It's all so unknown until it actually happens. Big hugs!
My mom described the death of her mother, the same.
Struggling for breath, but they were both pretty non responsive at the same time.
My thoughts and prayers are with your family at this time.