My grandmother is receiving hospice care and is "actively dying." What does this mean?

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My grandmother has been in the nursing home for almost a year now; she has dementia, and today my mom called to tell me that she is receiving hospice care and that hospice told her that my grandmother is "actively dying." I am away at college but am trying to get home tomorrow to see her. What does actively dying mean? Does she have days left, weeks, hours? Additional information: my grandmother hasn't been eating well for quite a time and has lost a lot of weight over the past few years, but she has lost an alarming amount of weight in the past few months. My mom couldn't really get a straight answer from the nursing home about how much food she's been eating recently, but from what I have ascertained, she has barely eaten the past few days. When she was able to, she signed forms stating she didn't want anything like a feeding tube or being hooked up to a machine. Currently she is receiving morphine and diazepam -- I think they started the morphine today. My mom says that her breathing sounds difficult and is rattling a little, and she's mostly unresponsive; they are wetting her mouth every so often, as she lays in bed with her mouth open. My aunts and uncles that live far away are coming to see her. Although I know it will be extremely hard, I want to be there to comfort her and let her know she is loved. My grandmother is my best friend. She was always there when my mom had to work late, and she basically mothered me, and I love her so much. So I guess my question is: what should I be expecting? Are these her final few days?

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MissionMorgan--
I am so sorry to hear this news, but am glad you will make it to be with grandma as she (hopefully) passes gently into that good night.

Morphine and Valium are often used to control pain and anxiety. Organ shutdown hurts...and the meds keep the patient comfortable. The "rattling breathing" is normal, don't let it scare you. She may have moments of "not breathing", but then takes a deep breath and keeps on. Again, normal and don't be scared.

Talk to her, tell her you love her, let her know you are there, She will feel your presence. She's not eating b/c her stomach can't digest anything. Her urine output will lessen and then cease. Again--normal.

No one knows how long this will last, but certainly not weeks. Probably only a few days. Possibly only hours, no one can predict this with certainty.

She'll likely not respond to you, but hold her hand, tell her you love her. And be grateful for having had a wonderful woman in your life. Keep the room quiet and respect this sacred process of passing from this world to the next.

Bless you with comfort and safe travels.
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missionmorgan- when I got the call from hospice that my mother was “transitioning” - they meant she was entering the final phase of “active” dying.

They told me to expect a few days to a week. I went immediately anyhow to see my mother and spent a little time just sitting with her.

I’ll always be glad I did as my mother passed about seventeen hours later.

I’m glad her final stage was quick - although she didn’t seem to be in any pain. In fact, when I went to see her she was dressed and sitting in her recliner, appearing to be asleep. I had seen her like that hundreds of times. The thing that was different was her breathing. It was a bit labored and it would completely stop randomly for 30 seconds or so. The first time it happened I thought she had passed at that moment - as I sat there with her. This type of breathing is common in the end - they have a technical name for it but it escapes me right now.

Personally - I’m not sure why I came to this conclusion- but as I sat with my mother, I didn’t want to intrude on what seemed to me to be a sacred moment in time. I did tell her that I loved her - in a quiet voice - and before I left I kissed her forehead gently. I honestly thought I’d see her later the next morning but it was not to be.

I’m sorry that you’re having to go through this difficult time. You are truly blessed to have had a wonderful, loving grandma for so long. At your age you’ll have many good memories of your grandma for years and years to come.
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Go now, be safe, and say your good byes. Your grandma will hear you. She is a lucky lady to have you for a granddaughter.
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When my husband was at the end of his life we were told he wouldn't live through the day and the family gathered. However, my oldest daughter lived in New Mexico (we were in Minnesota). We made arrangements but couldn't get her on a plane until the next day. To everyone's surprise, my husband (who appeared to be sleeping and was doing the breathe, stop, breathe again routine) held on until the next day. Our daughter phoned just before she got on the plane. She told me to tell Dad she loved him and I said "tell him yourself" and held the phone to her ear. She did, and within minutes after we hung up he passed. It was almost as if he waited for the sound of her voice. I have heard this from others, that some who are passing need that last voice, that last touch. Don't wait to go see your grandma. Just go and let her know how special she is to you. You won't be sorry, and it will help you later as you walk through the grief. Peace be to you and yours at this ever so hard time of saying goodbye.
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So sorry to see this! I went through Actively dying with both of my parents last year 6 months apart from each other. Yes its a difficult time but my goal was to make sure that both of them did not pass alone! We spent 4 days at the nursing home never leaving they both passed with in the 4 days. The last sense to go is touch and hearing so always touch and talk to her let her know its okay for her to pass your family will be okay! She needs to know that and you need to let her know. God bless to you and your family!
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It sounds like she's been actively passing for awhile now. They can last weeks or days or hours. The not eating is a natural part of her actively passing. Dehydration is best when someone is passing. The morphine is for her breathing and comfort and any pain issues she had and is most likely in a small dose. The open mouth breathing is part of the process. She may have a burst of energy hours or days before passing. I once saw a be ridden women get out of bed and run up and down the ward 2 days before passing away. This is a good time; life coming full circle. Don't be shocked when you see her. She may only be 70 or 80 pounds. It sounds like her body has been preparing for some time. Also, it's not necessary to continue to invade the person's space by taking blood pressures and stuff like that. Clothing is optional at his point and many times we cut up clothes to lay over them The only time for activity is to turn them as to avoid bed sores. Foley in to avoid diaper and lay a chuck under her for BM. Alternating pressure overlay or mattress. Oral care with sponges on sticks is important. You can make the sponge moist with mouthwash or toothpaste and gently clean (gel for the lips). The oral care is neglected most often. Sponge baths with heated cloths prn. Make sure all the funeral arrangements are dealt with prior to her passing. See you on the other side...:)
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Yes she is dying, my brother was in hospice a few days ago he died Friday. It is so hard to watch them go, but God will give you strength. They put people in hospice when they are in their last state of death. The medicine is to keep them comfortable. Trying and get to see your love one, she would love that.May God be with you. I am having my brother home going Friday. Also my brother had demitmia.
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When my Husband stopped eating it was about 3 days until he died.
He was comfortable.
He did have Morphine.
He was sleeping most of the time but he had been sleeping most of the time prior to this so it was not unusual.
He did have the build up of mucous that causes the "rattle" sound or what some people call a "death rattle". It is difficult to hear but for the patient it is NOT painful. It is important that you do not try to give fluids or food to eat. First the body can no longer process it. And there is a great risk of choking. And do not try to remove any mucous by sticking a swab in the throat to wipe it out that may cause gagging.
Hospice will keep you informed
There are signs that they look for.
Mottling in the skin. That is discoloration.
If she develops a "Kennedy Ulcer" and that can happen VERY quickly usually the time is very short, within 24 hours.

But like everything in life each person is an individual and "Actively Dying" will happen in its own time.
If she is a private person she may not want anyone with her when she dies so she will wait until someone goes to the bathroom, gets a drink, goes to answer the phone....On the other hand she may wait until she is surrounded by everyone she loves.
Just know she will no longer be in any pain
Give her a kiss, hold her hand..
Give her permission to go
Tell her you will be alright, that her loved ones will be alright. You will miss her, that you love her but you do not want her in pain any longer.
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I want to start by saying I don't have any first hand experience, but it sounds like hours or days at most. Sorry.
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Actively Dying means the person doesn't want to be rushed to the ER - they wish to allow their body to expire naturally.

This doesn't mean tomorrow - it can be days, weeks, months, years - - - my SIL was on Hospice, actively dying, for about 5 years.

It means not forcing them to eat and generally means no resuscitation.

It is not a time to start neglecting though. If the person is hungry, you are supposed to feed him/her. They are still supposed to be cleaned. Medicines can be optional.
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