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Hospice suggested that mom was "transitioning" this week...today she is up and talking and moving around. What is happening? I don't know how to handle this. As her primary caregiver, it has become a constant rollercoaster of emotions, I'm physically and mentally worn out. Advice, experiences, stories, anything would be appreciated!

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Dear "sydneybritt87,"

I know how difficult it is dealing with the "rollercoaster" of emotions and that you feel worn out by all of it.

In my dad's case back in 2004, his rallying was extremely short - a day. I'm sure everyone is different and there have been times when a few months ago, I thought my mom would pass away at least three different times after surviving COVID and severe dehydration.

You could look for the signs that come with nearing the end. If you need to see what those signs are, go to the top right of this page and click on "care topics" and under "end of life signs" there is information on all of this.

My heart goes out to you during this very upsetting and difficult time.

You'll be in my thoughts and prayers.
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sydneybritt87 Oct 2020
Thank you for the advice.
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My brother did that. During an earlier hospice stay, he walked out of the hospice facility! He remained away for quite some time, months.

When he returned, he was doing very poorly. When I told him that I called his children to inform them of his condition he improved.

Both of his adult children lived out of state and took a couple of days to arrive there. He was so excited to see them!

He did a complete turn around. He was laughing and was doing so much better that the nurse walked in his room and said, “It sounds like there is a party going on in here!”

I felt that he would be leaving like before. The nurse assured me that he wasn’t leaving this time.

Shortly afterwards he slipped into a coma and died peacefully. The nurses were so lovely. They cared for him until the end. The nurses will inform you as to what is going on.

It is a roller coaster, agonizing at times. I’m so sorry that you are struggling with this.

It’s not easy. Sending hugs and prayers your way.
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sydneybritt87 Oct 2020
Thank you for sharing your story, it really helps.
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"sydneybritt87,"

Also, I know you asked this question on September 30th so I'm wondering if there is something more specific you are looking for as quite a few answered on that thread including myself.
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sydneybritt87 Oct 2020
I guess I just wasn't expecting this quick or drastic of a turnaround in her behavior two days after being told she was transitioning. I suppose I'm confused about what to expect.
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"sydneybritt87,"

I understand you being confused by the quick and drastic turnaround.
Have you looked at your mom and seen any of the signs that were given to you in the booklet hospice gave you or that are under the care topics, end of life signs?

What has hospice said about the drastic turnaround? They should really be guiding you through all of this so you aren't left wondering.
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sydneybritt87 Oct 2020
Yes, I’ve seen her exhibit almost all of the end of life signs...sleeping, confusion, weakness, mottling, changes in breathing. Today is the first day she’s been alert and out of bed in 5 days.
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"sydneybritt87,"

As hard as it is to accept, there's nothing you can do to prevent the inevitable. All that's left for you to do is wait and in the meantime, hold her hand, talk to her as they say "hearing" is the last to go, tell her anything you feel you need to say and she needs to hear. Just love her as you prepare to let go. I pray you will find the strength to do those things.
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sydneybritt87 Oct 2020
I appreciate your words, thank you.
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Sidney,

I have pictures of the last days with my brother. I look at them occasionally. It used to make me very sad. Now I choose to only remember the good times.

I am trying very hard to do that with everyone in my life. It makes me sad to only think of hurtful instances. I don’t hold grudges in my heart any longer and I am much happier now.

We really aren’t hurting those who hurt us by holding a grudge or not forgiving. We hurt ourselves. There was a time that I could have never felt the way I do now.

My relationship with my brother was complicated but there were reasons for his actions. I fully accept that now. Hurting people sometimes hurt others but I know that he regretted hurting me and was sorry. I completely forgave him.

Feeling peace in my life means more to me than feeling justified for past issues. Besides, no one can change the past. It’s over and done with. Why get stuck? Moving on is much healthier.
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StuckinOr Oct 2020
You said that perfectly. I took care of my brother for almost 9 yrs. He would say to me so many times, "how can you be so good to me when I was so rotten to you". My words were plain and simple. You are my brother and what was in the past, stays in the past.
As a young boy he had major problems. He had ADD or ADHD(not sure which one), at 9 yrs old, my parents got called into talk with the principal. He said there wasn't anything else they could do for him but recommended a new wing was built onto the hospital in Raleigh/Durham, NC. We lived in Asheville.
I only found this out a few years back from my mom. She has no records, doesn't remember how long he was there. My guess is, they used this new wing to use people as Guinea pigs. To my knowledge back in those days (around 1965-66) they did all kinds of things to mentally ill people. Shock treatment, drugs and other things. I always told myself, that's what probably put him over the edge and he turned out to be a lair, thief. In and out of jail numerous times. He got married at one point and had 3 boys. He wasn't allowed to see them until his ex got fed up and sent his oldest to live with him at my house in OR.
Sorry about the long story.
Fast forward to around 2005. He decided he wanted to move back to NC to be near his sons and to get to know them. Myself and friends told him to check it out first and go visit. His oldest told him and promised him all that he wanted to hear. So off he left to move back. I tried talking to his daughter in law on everything I knew about the system and if she needed help, to call me. I would do whatever just for my brother.
This Jan 2020, they called and said he was in the hospital in CCU and was on a ventilator. As soon as I could (by now I'm living with and taking care of our mom) I take off to NC. His living conditions were not good and my gut tells me they were using him for his SSD. It was such a joy to see him light up when me and our oldest brother walk into the hospital. When I took care of him in OR we had all the right papers set up for him (DNR). He did not want to be hooked up and kept alive like that. Nothing had been done with his son and DIL. I told the hospital I wanted to talk to his Dr's. He was pretty alert at this time. I had asked about PT, they said that PT doesn't come in when they are in CCU. I said we'll is there anyone that does PT with them. He said nurses will when they have time. Never saw not one do any manipulation. So I started. He finally got off the ventilator, flirting with all the nurses. They started talking about rehab and put him in his own room in a regular room. So I made my plans to fly back to OR. For my mom and my fur baby of 14-1/2 yrs who was declining.
Was halfway home and his DIL called and told me he went into respiratory failure. The next day he died. 5 days later I had to put my Lil bear (fur baby) down. Came home really sick also.
Went into a depression that I thought I'd never come out of.
What really pisses me off is I couldn't get my nephew to send mom and I a death certificate or autopsy report.
I honestly think that he had covid and I came home with it also. If anyone has kept up on this, some of the first cases were in Charlotte, NC in January 2020.
I miss my brother so much and wish I had made him stay in OR, but I understand him wanting to be near his sons and their families.
So sorry this is so long but I guess I needed to get out some of this for the love I had for my brother.
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Sadly I can all to well relate to what you are going through. It's the rollercoaster of emotions that are the hardest to deal with. One minute you think they're dying and the next they are not. It's one crazy ride. I'm sorry you are having to go through this. Just know that all too soon it will be over and you will be on the emotional rollercoaster of grieving.

I was told my husband was dying 4 different times between 2108 and 2020. He was under Hospice care in our home for 22 months and on Aug 5th and 6th he was in a partial coma, and Hospice said he would be dead in 3 days. Well, he lived until Sept. 14th. I've said this many times on this forum, but I will say it again, only God knows the day and time when He will call your mom home. so just try and enjoy whatever time you have left with her. God bless you.
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Sounds like she is getting in one more round of living...she is wanting to talk, or eat, or drink and move around....not unusual.
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Just make SURE you’re not her ONLY caregiver! One person cannot do it alone. I was where you are some years ago. I had to tell Mom what I felt I could handle and the rest would have to be done by others or hired out. Be calm but FIRM in this: no protests from her will change your mind. Hang in there.
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I have always heard growing up that people terminally ill get really better before they go. Like a picture of health and then things turn around rather quickly. I guess you never really know. Just take things one day at a time. All any of us can do. Best of luck and prayers sent.
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Agreeing with what has been said already--you have no real concrete idea of what is transpiring in a dying person's body--there are signs, and you see them. Gratefully you are not calling all and sundry and telling them things are fine.

My FIL rallied one last time--when the Dr. told him he simply could no longer live alone. That lasted about a day, and then he slipped into a coma and was gone in 2 hrs. We were there and I think the only people who were 'surprised' were my DH and his sister. They had seen him rally so many times--but they also weren't hands-on the last 6 months of his life as I happened to be.

It is kind of 'brutal' to watch, but dying is an extremely personal experience. I hope you are giving mom the peace she deserves and letting her body guide your care.

This is hard, as so many of us know.
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I’m not a nurse, but from experience I can tell you this happened with my mother two different times over a year, the last time was June 2019. I prepared myself both times for her leaving, and she bounced back. My mother has since passed away, just twenty days ago, and it’s tough. Even though I expected it could happen for years now, I’m still completely grief stricken. I only know that God gave me that extra year or so with her because He wasn’t ready to take her Home yet. Now she’s there.
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NobodyGetsIt Oct 2020
Dear "GvMercyToParent,"

I'm so sorry for the loss of your mother almost three weeks ago especially after preparing a couple of times since June of last year. It's very hard even if you do have forewarning or time to prepare - when it actually happens, it's a whole different ballgame.

May God grant you His comfort and peace as you grieve - my thoughts and prayers are with you! A big hug to you - take care.
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Near end of life, my father had an entire day of sleeping that was unusual. His visiting nurses suggested 'transitioning.' But the very next day and following days, he was alert and eating and his normal self. However, he passed some 10 days after that one odd day of a 'complete sleep state.' Looking back, that may have been the marker of what was to come. His passing. All end of life experiences seem to differ a bit. It may or may not be your mother's time... Hugs to you and your mom during this difficult time.
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I've been a member of the Knights of Columbus for almost 30 yrs. I made friends with many of the Senior Knights as time went by. I learned about the history of our Council and a lot about how our hometown was run. I was given a prayer book by a friend from the Knights and in it was a prayer called The Three very beautiful prayers, for the dying.

There were four men that I was very close with who were in there late 70's and 80's. I called them all Favorite Uncle ____ whatever there name was, they called me Favorite Nephew John. I was in my late 40's and 50's when each died. I was at the hospital when each of them Surged. They went from what was thought to be minutes away from death at which time I recited the Three Very Beautiful Prayers for the dying. In a very short time they peacefully passed away, and my friends families all really appreciated that I shared those prayers prayers for their husbands, or grandfather, some brothers. I count this as the greatest privilege given to me, in my life.

Yes, surging is something real. The first time I was told that was what was happening, I was surprised, because when they surged, we talked over things we'd been discussing for years during happy times, they ate some food or a treat for a few hours we enjoyed our last conversation. I am glad I was given the privilege of helping them transition to Ever Lasting Life.

God Bless to all of you Caregivers taking care of those in the late stages of their lives, and those of us diagnosed with all Terminal Illnesses.
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NeedHelpWithMom Oct 2020
You are a lovely person. Your kindness is appreciated by those in need. I adore your warmth and passion. Mother Teresa and Pope Francis would be proud of you!

I attended Catholic school growing up and was taught the Works of Mercy in catechism class. You are indeed practicing these in your daily life. Good for you!
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Excellent book from hospice nurses, about dying, as observed with their large experience of patients. Shares with us things the person might say something about, such as things that relate to travel. Or things they need to do or wait for or people to see. Usually so minor their statements could be missed, but this book helped me understand things that could happen with Mom. "Final Gifts" by Maggie Callanan and Patricia Kelley.

https://www.amazon.com/Final-Gifts-Understanding-Awareness-Communications/dp/1451667256/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=&sr=
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Hospice told us the same thing about my 92 y/o father. He was "transitioning" and was ready for end of life meds. He was in assisted living, and due to COVID we were granted special permission to go in and "say goodbye." When we got there, expecting him to be lying in bed barely coherent, he was sitting at the table, eating soup and watching a golf game on TV. He was talking normally, and we spent hours talking and telling him how surprised we were that he was actually okay. Hospice explained that he had surprisingly "rallied" during the time that it took us to get there. Exactly 7 days later, we were once again told to come and say goodbye, he was deteriorating rapidly. This time when we got there, he was lying in bed, barely coherent, and he peacefully passed away 3 hours later. The last 8 months before he passed were physically and mentally exhausting. He was in pain, suffering, praying for death, then he would have a good day or so where he looked like he was okay, and we would think he might have a couple of more years left. This went on, back and forth. Then all of a sudden he deteriorated, was placed into hospice, then an amazing rally, and then gone. It's been 4 months now, I miss him every day, but those few hours we had when he rallied in hospice are now a treasured memory. He was his old self, if only for a few hours.
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NobodyGetsIt Oct 2020
Dear "Tressie14,"

I'm so sorry you lost your father several months ago and yet, I'm so thankful as you are that you were able to have a wonderful visit with him on one of those "rally" days.

It really is brutal - the rollercoaster ride we often find ourselves on. It wreaks havoc on us physically, emotionally and psychologically.

May that one treasured moment be a lasting memory for you and your family.

You'll be in my prayers as you continue with the grieving process - take care of yourselves in the meantime.
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sydneybritt: As you'd posted on September 30, I am wondering how is it going for you. Prayers sent, dear sydney.
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sydneybritt: Edit - You had posted on October 4. Prayers sent.
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I DON'T KNOW ABOUT "RALLYING" . I AM STILL NEW TO ALL OF THIS. I TRULY BELIEVE THAT WHEN PEOPLE HAVE A TERMINAL ILLNESS AND THEY ARE MOVING INTO THEIR LAST DAYS OF THIS LIFE THEY EXPERIENCE THE NEED TO MAKE THINGS RIGHT WITH THEMSELVES AND GOD. UNTIL THE PAST COUPLE YEARS, I BELIEVED THERE WAS A HIGHER POWER, BUT NOT RELIGIOUS. SO, TO HEAR STORIES OF SEEING ANGELS AT A DEATH BED OR LOVED ONES WHO HAD PASSED PRIOR IN THE ROOM WAS DUE TO THE MEDICATIONS GIVEN. l  I AM CHRISTIAN NOW. AND MAYBE SEE THINGS IN A DIFFERENT PERSPECTIVE. I BELIEVE THAT GOD GIVES THEM A CHANCE, TO REALIZE AND SEE THAT EVERYTHING IS GOING TO BE WONDERFUL FOR THEM AND THEIR FAMILY WILL BE JUST FINE AFTER THEY ARE GONE...SAD FOR AWHILE BUT STORIES TO BE TOLD LONG AFTER..  MY MOM TOO HAS DEMENTIA AND LIVES WITH ME. I KNOW THE EMOTIONS ALL TOO WELL. I ALSO KNOW THAT NOBODY KNOWS WHEN SOMEONE IS GOING TO DIE, EXCEPT FOR THE ONE WHO BLEW LIFE INTO HER. AND MY SISTER IS A NURSE PRACTIONER SPECIALIZING IN MENTAL HEALTH AND REALLY GETS MAD AT ME FOR SAYING THESE THINGS.  MY ADVICE, KEEP A JOURNAL. WHEN SHE IS GOOD ENJOY EVERY SECOND YOU HAVE WITH HER.WRITE IT DOWN. WHEN YOU FEEL LIKE YOU ARE GOING TO LOSE YOUR TEMPER AND MAYBE BLURT OUT SOMETHING AWFUL OR FEEL AWFUL FOR HAVING THESE EMOTIONS...WRITE IT DOWN. YOU ARE NOT WRITING A NOVEL..DOES NOT HAVE TO MAKE ANY SENSE. AND KEEP EVERY FEELING AND THOUGHT, GOOD OR BAD IN THIS BOOK. DON'T READ WHAT YOU WROTE YESTERDAY OR LAST MONTH..JUST MOVE FORWARD. NO NEED TO GO BACKWARDS..YOU'VE ALREADY BEEN THERE :)AND WHEN HER TIME COMES TO LEAVE THIS PLACE, BE HAPPY FOR HER AND THE BOOK....BURN IT!  TAKE CARE OF YOURSELF AND GOD BLESS
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Update on Mom: She has one decent day and then a few really really bad days follow. She will be alert for an hour or two and then basically pass out. Her pain has been uncontrollable so Hospice upped her Fentanyl patch to 100 and she's on a syringe and a half of morphine every hour with Ativan when she's restless or nauseous. She eats very little and only sips on Sprite every now and then. She's developed a consistent cough and secretions seem to be building up more and more. Everyday is different at this point. I just don't know how to handle the emotions of the rollercoaster we're on at this point. Thank you all for your advice and support, it truly helps me get from one day to the next.
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NobodyGetsIt Oct 2020
Dear "sydneybritt87,"

Thank you for updating everyone. I'm sorry to hear that your mom is having more and more really bad days and that your mom is in so much uncontrollable pain. It truly is hard to watch the rapid changes and to keep your emotions in check. There's never a "one-size fits all answer" to how to cope with those emotions as we are all different. You keep trying to hold on and find something that works for you.


"I can do all things through Him who strengthens me." Philippians 4:13
May you let Him strengthen you each day and in each moment.
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