Hospice said mom is transitioning. What do I need to know about this and what signs do I look for?

I am so sorry for what your mom and you are going through, Sydney.

You've been given great advice so I won't repeat them. One helpful thing I learned about myself decades ago was when things are incredibly emotional to try to focus on the technical side. (This was extraordinarily helpful was I was counseling people.)

When my mom was on hospice and doing fairly well, one morning she didn't wake up. By late afternoon I knew she was at the end of her life. It was a matter of when she would take her last breath. I put an oximeter on her finger and kept an eye on it.

First, it helped me know where she was in her journey of passing away. In the two and a half days it took her to pass, I could see her heart rhythms change (heart rate, strength, arrhythmias) and her oxygen lower. I could keep my hospice informed and my sisters and niece informed so they knew when to arrive.

Second, on a technical side (which helped me in my grossly sleep-deprived state), it was fascinating to see what the body does as it processes to its end.

I'm so sorry for this difficult time. *hug*

sydneybritt87: Huge hugs to you sent virtually. My mother was not on Hospice, but Palliative Care. Prayers sent.

My sincere condolences. I use to be a hospice volunteer, and noticed a few things that can happen, but everyone is different. Some will tell you they are going on a trip and have to pack their bags. They stop eating & drinking, become unresponsive. Breathing can become irregular. Skin may change color. Weakness, and sleeping a lot. One odd thing I would see sometimes, was a hyperextended neck, and their mouth would make the "o" sign.

I’m sorry you’re going through this. Our hospice nurse told us when the end was near three things would happen and they absolutely did. Dad wouldn’t communicate with us anymore, he wouldn’t want food, and he’d sleep a much deeper sleep. He stopped eating five days before he died, stopping talking to us the day before, and his sleep became the deep sleep much of the last three days. He was kept peaceful with the meds of hospice, given by me with their guidance. I wish you both peace, it’s a hard road to walk

My mom, who had Alzheimer’s, passed 2 yrs ago in the hospital b/c hospice didn’t accept her until few hours before she passed. Nevertheless, docs were great. She was able to speak, but wheelchair bound, so confined to bed. She got double pneumonia and we fought it for three days but to no avail. Mom begged us to let her go. She wasn’t hungry or thirsty, but nurses wet her mouth for comfort. She was taken off IV drips for dehydration and the oxygen. Although she exhibited terminal restlessness, she was comfortable and surrounded by family. She heard and saw things that weren’t there, but they were fun, beautiful things that tickled, and didn’t frighten her. She got a final blessing from our pastor & began receiving morphine and Ativan. Mom thanked us for allowing her to “go home” and rested as we sat with her and said goodbyes. She went into a deep sleep and passed less than 24 hours later. I never left her side but for 3 min. and wouldn’t you know she left then. I was devastated, but nurses said this is extremely common. My mom was at peace and in full light once again- it was a beautiful, bittersweet thing. God bless you- it’s tough, but you’ll make it!

Hugs to you. I understand. I read the hospice booklets constantly while my dad was transitioning. The nurses would tell me the various signs he was showing. The hospice doctor called and said that he had 2-3 days left. Thankfully, that very morning, I was able to have an outside window visit with due to Covid-19. I was able to tell him everything I wanted and needed to say. I will treasure that time forever. He passed away exactly 24 hours later.

Hospice gave us the booklet Gone From My Sight, the Dying Experience by Barbara Karnes, which I read several times and found extremely helpful. We learned not to push food and drink, which is contrary to every inclination one would have, now understanding Mom did not need to keep fueling her body any longer. We learned to stop all medications except those absolutely necessary for pain, agitation, and her psychosis from a rapid onset of vascular dementia. We learned to manage Mom from a hospital bed with draw sheets and a commode, rather than trying to get her to the bathroom, which was painful for her and all the movement/lifting was unsafe as she became too weak to bear any weight. We learned that there is something worse than death, and that is living in a nightmare caused by dementia, with pain, fear, and anger. This was an experience I would not wish on anyone, as watching my Mom go through these things and there being very little I could do to make it better was nearly unbearable. But, you do it because it's your Mom and you would do absolutely anything for her. It's the worst time and the best time, because you get the chance to show her how much you love her, you are there to comfort her, and you get to say your goodbyes. Good luck to you. It is a most difficult journey, but an honor and a privilege to be there for her.

“When someone you know is transitioningin hospice care
It means that it's time to say the things you need to say a person you love, and to spend as much quality time with them as possible. It might also be time for those who live further away to make a last visit and those close by to make a special effort.”

😔💔. My last week with my mom we had hospice...she could no longer eat, speak,...eyes wide open, figitty, and slept little or not at all. She was constantly scooting off the bed and if sitting on the couch she was still scooting. Unable to stand on her own ...or at all. we would take turns holding her up swaying to her music ...
I faced the 2 couches together which was much better than the bed (with rails) safer. We cuddled, she was able to relax n get some sleep. 💔. I told her we needed to get some rest..I wish I had just stayed up with her. When she woke I know I was in a panic, the hospice nurse came and said “my mom was transitioning”. I’m so sorry. From my experience
💔💔💔ur about to lose ur mom.

For the next 2 days “transitioning”...

my advice? This is the time to hold her, feel her touch....speak ur heart.
for me, i always spoke my heart now I long for her touch. 💔💔💔.

I wish there was an easy answer, but everyone is different. I've been through it twice.

My MIL was in memory care, and was on Hospice. While there was some change the week before, on the Monday before she passed, the private caregiver I had hired called me and said things were "off" and asked me to come up that day (my spouse and I alternated most days, but took Mondays off). She had became very agitated. She wouldn't stay in a chair, kept trying to slide out, very fidgety. I spent one hour holding her to keep her from falling, while yelling at my phone to call the front desk (no one on the floor was responding to the call button). Finally, the good nurse showed up, got some help, and decided to call Hospice after getting her settled and giving her some Ativan. Hospice was there by 7 p.m., and made a determination that she was transitioning and starting terminal restlessness, and put everything in place to have 24/7 nursing care - literally, one of their staff was there all day/night, to administer meds and monitor her. They said they anticipated about three days. After Monday night, she was never really conscious again.

She passed away early on Thursday morning. Once Hospice stepped in, and provided anti-anxiety medication, and the like, she was comfortable and passed away quietly. Everything just slowed down over the days - breathing, heart rate, etc. She did exhibit the behaviors described in the typical hospice "what to expect" manuals. All we could do is just sit by her, hold her hand, and talk to her. She passed away after we left, which happens.

My father's partner was a bit different. He was discharged from the hospital to at home hospice on a Saturday afternoon. It was a horrible night, mainly because we were not given any medications... all we had were antibiotics and he was refusing to drink, so we couldn't even administer that. It was a very long night of terminal restlessness. I had been calling Hospice from 2 a.m. on, and the nurse was finally able to come out by 7 a.m. Sunday, and after seeing the situation, and realizing that we had not been provided what was actually needed for in-home hospice, and this was not good, he was transported to a hospice facility - thank goodness. He was bathed, and they got him comfortable. He had a final rally, where he actually got out of bed and left the room! He passed away just after midnight on Monday. He was comfortable, and quiet, and I just told him he could go if he wanted, passed along all of the messages, and that we'd be okay. Ten minutes later, he was gone.

I don't know how involved hospice is - in both of my experiences, I had 24/7 hospice support. Hospice kept both of them comfortable, and all I could do was to sit with each of them and be there, and talk to them. Noise was agitating to both, so we just talked to them quietly at times.

I hope it's a peaceful transition, and I hope your hospice team is supporting you and your mother and you find the best way to support her as she passes. Everyone is different, so you'll just have to go with your gut and the situation.

Please remember to care for yourself - you will need meals, hydration, and to get up and walk around a bit as needed. Don't be surprised if she passes if you are out of the room, and don't feel guilty about it if it happens - it's quite common.

Take care...

Well..with my dad, it was reaching for things in the "air' and smiling at "them". Laughing, squeezing my hand really tight, and at one time he would lie on his side and "climb the wall" with his hands...
I had made him a "Welcome Home Dad" sign when he came home from Rehab, and I said "See the sign, I made for you?" And he said "Come Home Dead?" that kinda shocked me! Then the day before he saw my husband standing at the door (or at least there was no one behind him that we can see.) But all of a sudden he got up (He just had a surge of energy, and got up when he knows he can't walk, and started running towards the door.) My mother thought he would fall so she made him sit back down, but there was a look of pure Determination on his face....
He had dementia, Scalp Melanoma, with Brain Mets, so unfortunately he couldn't speak to us, but I really would have loved him to tell me what he was "Seeing" as he reached for the sky....

My Mom was in a NH. She started to hum and as the days went by the humming was getting louder and louder. Besides this bothering the other residents it also is an anxiety and meds were given that I agreed to. They did calm Mom done. The next sign was she didn't want to get out of bed. They tried but she fought them so I told the staff to let her be. Then she stopped eating. They said she was having a hard time swallowing and wanted to test her. I said No. No more poking or prodding and had Hospice called in. She had closed her eyes previously and never opened them again. She was aware but the last six days of her life she just laid there. We went to visit and left at 1:30 and was pronounced dead 20 min later.

My Dad was on in home Hospice for 5 weeks. The Dr. said he wouldn't live out the weekend. My Dad loved the holidays and Thanksgiving was coming up. All his children and grands were at TG dinner. By that time, Dad had lost the ability to speak but he could grunt. The guys watched a football game and ate with him in the living room where his bed was set up. The women and grands ate in the Kitchen. Dad was put to bed at 10pm. Mom slept on the couch. When she woke up in the morning he was gone.

My Mom, her body just shut down, she had Dementia. Dad had heart problems but was able to eat a meal with his kids and enjoy his last few hours. There is something called rallying where they haven't been eating, sleeping alot or just out of it and all of a sudden they are up and eating and talking. This only usually lasts a day or 3 and they then pass.

I know that everyone's dying process is different, yet with with some similarities. I was told on the 6th of Aug. from hospice that my husband would be dead in 3 days. Well he just died on the 14th of Sept. He went through all the stages of dying, including, confusion, extreme pain(that hospice could never get under control), agitation, didn't eat for 41 days and had no drinks for about 25 days, did get the mottling right near the end, and was only peaceful for one day, the Friday before he passed. It was very hard for me to stand by and watch my husband suffer so, but he wanted to die at home and he did.

I'm guessing your mom isn't eating or drinking if she's transitioning at this time. I hope and pray that her passing will be quick and that you won't have to go through all the stages of dying with her. May God give you His peace and comfort during this time.

There aren’t any rules. Just be there if you are able to. Some people can. Some can’t. No judgment from me.

God bless you and your mom. Many hugs.

May God give you strength and peace during this difficult time.

Just give her as much love as you can and take care of yourself, it will be a tough time after as well, so be sure and get rest and at least one good meal a day.

Great big warm hug!

Dear "sydneybritt87,

I'm so sorry that you are going through this. I've been through it with my dad in 2004. Hospice provided me a booklet with the signs/stages of nearing the end of life. Maybe you can ask them if they have one. You can also go to the top of this page and click on "care topics" on the blue-green bar and go to "End of Life" and you will find information there.

They can rally - meaning a burst of energy like wanting to eat, talking etc., then my dad started sleeping more and more, stopped talking and his final day his lungs were rattling, lower extremities were mottled, lowered blood pressure, urination production decreased and towards the end he gasped for air.

I will be thinking of you and praying for you - that God would be with you as the time draws near.

(((Hugs)))
I don't have any advice or stories, just know that my prayers are with you and her at this time.