Very near death - need to talk to someone experienced!

kastellan

 Our LO is very near death. I’m just feeling so many things right now and want to share with someone who may understand. I want to share here what we are experiencing right now: if anyone in this group has a LO who has died, can you give me any insight to these developments and to what stage we may be in in the dying process? I know everyone is different and there is no estimate of a persons time left on earth - but I’m wondering if I have days, weeks, or possibly months left of this agony of watching  someone to die  -  it’s horrible, truly horrible.

Warning, this post is a little graphic concerning her physical decline.

We have hospice here at home and the nurse said she believes our LO is transitioning into ‘active dying’ but is not there yet. Our LO is unresponsive, unable to speak, sleeps constantly (like in a coma). She has an extreme amount of sleep in her eyes. I would say every 2-3 hours I wipe out her eyes and they are FULL of goop. Her eyeballs are filmed over, a really thick gel looking film.  She isn’t eating or drinking for the past few days: she’s had a few syringes of clear Ensure juice, and barely got it down - can’t swallow. Shes on liquid morphine: if we touch her body at all she winces in pain.  She has a catheter and her pee is the color of coke. Her earlobes are flattened tight against her head, and she has splotchy red all over her legs. I’ve read those are signs of impending death, has anyone heard of or seen that before? She does not move at all, she is breathing pretty regular but it’s slow, long pauses between breaths. 

Does this sound like the end to anyone here who is experienced?? Our nurse is a bit overly optimistic I feel like, she’s very reassuring and kind but I feel like she’s a bit tight lipped regarding death. I think she doesn’t want to say “she’s dying now” or “she won’t die for a while” to protect us in a way. 

I feel like we are just sitting here waiting for her to die. It’s a terrible feeling. 

Can anyone give me some insight into the dying process? What happened in your experience, does it get severely worse than this? Do I need to mentally prepare for worse things? 

Thanks for reading this. Xo

mrsfnulnu

I just went through this with my mother's passing at the end of January.  My mother was on hospice for about two weeks.  What you are observing sounds similar in some ways to my mom's process, but not identical.  I did not see red splotches on any part of her nor did I notice anything about her ears other than her skin/tissue as a whole became more flat and lax. Her eyes and mouth did get dried out and somewhat goopy;  there was a lot of phlegm/mucous in her mouth which we cleaned out with damp oral sponges provided by hospice.  My mother was highly medicated to keep her comfortable, and at some point we figured out the correct balance to keep her from wincing in pain when she was touched or moved.  She was taking an opiate as well as Ativan to help with the quite extreme agitation she felt at first when she was in the hospital/then started on hospice.   She passed away about five days after her last food and four days after her last liquid (other than meds).  About 24 hours before she passed, she began breathing very slowly.  We were convinced it was the end because she was pausing as much as 13-15 seconds between breaths.  She did not seem to be suffering.  It was surprisingly peaceful.  She appeared to be comfortable and we were able to stay with her and hold her hand and talk to her.  She was not catheterized and did not have much to eliminate in those last few days.  The very slow breathing lasted for about 6-8 hours then resumed to more of a normal breathing rate for about 8-10 hours, then began to get more rapid.  Her passing occurred quite suddenly after the onset of labored breathing; by labored, I mean it appeared as if she was trying to take a breath but couldn't for a few seconds and there was the dry sound but not the rattle that our hospice nurses tried to prepare us for.  She lost color and warmth over the course of about 2-3 minutes.  She did not struggle.  We were with her.  It was as peaceful as I could have hoped for and I am eternally grateful for our beloved caregivers and hospice nurses who supported the family members during that time.   I don't know if this was helpful to you but I will say that you should do everything possible to stay as close as possible during this time--we made sure someone was with her all the time and when the time finally came, we were all able to be there for her last few minutes because we were either already in the room or just down the hall.  I wish you and your LO comfort and peace.

mrsfnulnu

Sorry, one more thing to add to my other post: I don't think the hospice nurses (at least in our case) were trying to stay tight-lipped or be purposely misleading by not trying to project when "it" would happen.  I think honestly they have just seen enough to know that no two people are the same.  We were all--including the hospice nurses--surprised that my mom rallied a bit after she had such incredibly slow breathing for a while.  The last thing they want to do is to tell you it's still a ways off and then have you go somewhere and miss her final moments; similarly, they don't want to tell you it's imminent then have her make it several more days and exhaust your ability to stay "ready" that whole time.  Hang in there, fellow traveler.

terei

My mom was basically non responsive for about 3 days before she died.  Her breathing became slower + slower.  I did not give her anything at all to drink + tried to moisten her lips + swab her mouth with water frequently.  She had on a diaper but had little output for days.  I was with her 24/7 for about 8 days.

I basically played music I knew she liked + hovered around for her last days + talked to her a bit about letting go + going to see my dad + that I loved her.      I honestly do not know if she was aware of anything. 

It was agonizing, to be honest, just waiting.  Your mom sounds like it will be within a couple days, if it is anything like my experience.   

King Boo

From what you describe, you are poised on the threshold of the active dying phase within a few days.

Hospice does not like to pinpoint too specifically because there can be individual variables - however, they have guided hundreds out of this life and are pretty accurate.   Not every family can hear 'we expect here to begin actively dying the day after tomorrow'.

Active dying can be scary to onlookers, but hospice can help you understad the noisy breathing pattern, the stridor, does not cause distress to the dying person.  The ability to handle oral secretions decreases, making gurgling sounds that hospice can give medication for.  

I am sorry.