My mother is at end of life, but is this normal?

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My mother is at end of life, but is this normal?

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Hi, my 96 year old mother is at the end of life. Hospice told me on Monday that she would be passing soon. They didn’t hear any movement in her stomach, so her organs are shutting down. Today is day 13 with no food. She is still taking sips of water throughout the day.

My question is, has anyone else experienced this? She is bed bound. She pees in a diaper and sleeps all day and night. How long did your loved one go with only drinking water and no eating?

I am using my FMLA from work to be with her at the end, but I’m just not sure that it’s coming any time soon even though she’s so frail and weak. I keep thinking every day that I wake up, she’ll be gone, but she just keeps going. I’m mentally and emotionally exhausted.

Burnout End of Life Mental Health

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First...
PLEASE if you are mentally and physically exhausted ask Hospice for Respite.
They will place her in either an In Patient Unit or in a facility where they have a relationship, and the facility has a bed available.
Respite care is a benefit that Hospice provides and if your mom has been on Hospice a while I am saddened that they have not mentioned this.
There is also a program with Hospice called Vigil or Peaceful Passing. With the Vigil generally Trained Volunteers will take shifts to sit with a person at their end of life so that family can get a break or if the person is in a facility the Volunteer will be there so they are not alone.
Teach person has their own journey, their own time schedule.
If you talk to the Hospice Nurse or CNA they can give you other clues about signs of EOL. (End of Life)
Generally changes in breathing are common. Cheyne-Stokes or Agonal breathing.
Mottling of the skin. You will see this in the feet, legs first. Possibly on the back.
And..have you talked to mom, have you told her that you will be alright and that she can go, she has done her job raising you?
But again...PLEASE talk to the Nurse about a Volunteer that can come in and give you a break.

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Very kind reply.

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Everyone's dying process is different. My late husband went 41 days with no food and about 25 days with no drink, though he had a fentanyl pain pump that was putting some fluids in him, when he needed pain relief.
But that is not the norm, as most people do die sooner than that without food or water.
Only God knows that day and time when He will call your mom home, so just try to make the best of whatever time you may have left with her and make sure that you leave nothing left unsaid.
And sometimes the dying person needs to know that they're loved ones will be ok after they go, so you may want to let your mom know that you're going to be ok and that it's ok for her to go be with Jesus and her other loved ones that have gone on before her.

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This is a question for your Hospice team. They know her best and know her condition best. And they are there to answer your questions. In general terms, with only sips of fluid, the expectation is that death will come within 30 days. Your team can tell you signs to watch for. Very little urine passing and of a dark color, strong odor is indicative of little fluid in the body. The extremities will cool, with lower limbs often looking a bit bluish, mottled. I am so glad you have hospice for comfort care and that they are keeping her comfortable with medications. As a retired RN I have been there at the passing of so many patients. With minimal fluid there is so much less struggle with a clear airway. I wish you the best and am sorry for your loss. It is very difficult to stand witness.

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If you belong to a faith that provides the sacrament of Anointing of the Sick (generally Roman Catholic, Anglican, or Orthodox) get a priest there to administer this to her. She can also have Last Rites, which includes the anointing and possibly a last opportunity for her to take the Eucharist and make her last confession (if she's capable of speaking) and receive absolution. Even if she cannot eat, the priest (which might be a hospice chaplain) will take just a tiny piece of the Body of Christ (host) and put a drop of wine (Blood of Christ) on in and gently put it on her tongue. She should be able to swallow that.

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A beautiful and thoughtful answer! To depart from this world in a “State of Grace” is a blessing beyond comparison!

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sadly, yes it can take many days…recommend you check her for bedsores (hospice kept telling me my Dad didn’t feel pain), I forced palliative care Doc to come to the house to see…they immediately took him to hospice in the hospital…death and dying is normal and looks different for everyone

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I don't have experience here but with a 101 yr old mother I need to be prepared for EOL. Thanks for all your input to help me think through this. Yes, the dying process is challenging and difficult!

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Two weeks like that with my mother, and we only wet her lips with a sponge, gave no water at all which I had guilt about but I guess that’s what it should be. Love you and your sweet mother ❤️

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I’m going through the exact same thing. It’s been 16 days for us since my 92 year old mom who has dementia, came home and hospice came in. She’s on a catheter and is barely peeing or having BM. She is only taking a few sips of ensure and water throughout the day. Mostly sleeps as well. She was very agitated last night and this morning she said she feels like something is going wrong. She’s been reaching in the air and seeing people around her.
Like you, i’m amazed that she can still be here.
God has a plan and I just give it to him, don’t know what else to do.
Prayers for you and your mom. It’s not easy being here, but I’m so glad I am.

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That is tough sorry you have to go through this 😔

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My MIL lasted almost a year on liquids only Hospice. Her actual EOL was months, maybe 4-5, after being told by the Dr that she would go within a few days.

She had many days where she slept all day. Many days when all she ingested was 4 oz of Ensure.

Her actual cause of death was 'severe malnutrition' which upset the kids to no end. They felt that was somehow demeaning to them and their care of her, which of course, it was not.

I'm sorry for what you're going through. It's hard--but do take care of yourself. Death is so private and personal. Allow her and yourself the grace of patience and time. No one knows when another person's time is 'up'.

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I was taking care if my dad 24 hrs a day on hospice care at home and my brother came to visit during the day. He said he would sit with my dad while i went out for lunch with my husband and daughter and on my way my brother called and said he passed. It was like he was waiting for some time with just my brother.

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Same thing with my father, his sister came back from out of town and 10 minutes after she left,he was gone.

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As others have said, this is normal. Just chiming in to add that some people prefer to be alone when they pass (according to our hospice social worker). I asked my husband while he was still coherent what he wanted, and he said he wanted just me. Our kids and extended families were in and out of the room all day, but when he actually passed it was just me.
My mother in law had been upset for years that she had been at her mother’s bedside nonstop, but her mother passed when she was out of the room for just a few minutes. She was so relieved to learn from the social worker that this may have been what her mother wanted.

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I can relate to that. Frankly, as a lifelong introvert, I would not want a lot of people around me at EOL. Being an atheist-leaning agnostic, I definitely wouldn't wish to see any clergy hovering over me, if I'm still aware. If I decide on VSED, I hope it will be relatively quick. If my husband is still alive (he's 95 and I'm 88), I would want him there towards the end, if he is able, and perhaps our youngest son, but that's all. I sincerely hope not to put my family through a prolonged death watch, but I recognize that, "You can't always get what you want", to borrow from the Rolling Stones.

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People can go 70 days without food, but only 3 to 5 days without water.

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My husband passed away in November of last year. He ate very little from September till mid October. then he pretty much quit eating other than an occasional sip of soup, very little water and a tiny bit of ice cream occasionally. Had Hospice for him and they were great. I told them I wanted him to have peace and be calm. He had Lewy Body and was anything but calm for the last months of his life.
He seemed to battle everything, once they came on board they were able to keep him calm. I also told him I would be OK, and he could go and be "home". The last words he spoke to me (it took him about 3 or 4 minutes to get it out) was he wanted to go home. He never spoke again.
Hospice told me when he was getting ready to pass. The facility that he was in had kept the bed in his room open because he was so agitated most of the time. I got to stay with him the last 2 nights. I'm so glad I got to be there for him. We had always been in together during our life and I wanted to be there for him at the end. I held his hand and told him I loved him, that I would be all right and that someday we would be together again, would he please wait for me.
I miss him every day, he's never far from my mind but I would not want him here with me. His last months were truly hell on earth, and I prayed that he could go peacefully. Because of Hospice and the outstanding care he received at the facility, my prayers came true.
It's very difficult, everyone is different I'm told. Just keep letting your Mom know you love her, that you will be ok. I wish you the best, may she go quietly and if you want to be there at the end, I hope that works out for you. My prayers go out to you.

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mammacow, your response might be the most helpful thing I've read on this forum. Thank you for sharing from your hard-earned experience of love and grief.

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My dad's intestines stopped working. I think it was about two weeks from that point before he passed away. We were told that we should not hook him up to an IV as that would prolong death, but not prolong life. He was unable to swallow, so sips of water were out of the question. The doctors were amazed he lasted that long.

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My Mom went through this too. Started sleeping more and more, she refused food and only took small sips of liquids. So I would say yes, your Mother is getting near to her passing. My sympathies to you and your family. Watching someone waste away is the hardest thing to watch. I know as this tore me apart and was just gut wrenching to watch.

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I think you should save the FMLA for after death when arrangements are finalized, family come in, and you can sit in good memories of your mother. In my opinion, being there when the person takes the last breath has no importance. If you have loved your mother during life, and supported her as she aged(which is difficult in itself) then you should feel content with her passing when you are not there. Personally, I don’t know that I could stand and watch that. I have not yet had to. I am currently caregiver for MIL 99….She has dementia and I see her slowly digressing into the abyss of being in a body without a mind. That is difficult in itself but I just show love, make sure she feels safe, and content. I have an aide 12 hours a week so I have time to do things that require my focus. Other than that, I stay close by her side and try to make each day the best one yet.

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@RetiredBrain .. *I'm going to be honest & you're awesome for doing so & she's blessed she has you but, I know I couldn't take care of someone else's mother..as, I'm taking care of my own & it is extremely challenging & stressful, at times.
An MIL...her own bio family would have to come care for her..if her children aren't alive, her grandkids, her siblings' kids but, you can't think I'm going to take care of your mother or grandmother, or great-aunt... someone who's not even my mom, stop my life & you get to go live your best life. Not going to happen. Because I bet, a husband wouldn't do it..he'd place an ex or deceased wife's mother in a facility faster than you can blink!

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My mil lasted three weeks like that. The hospice nurse asked me if there was any "unfinished business." My mil had wanted my husband and I took take a vacation after she passed, so I bought tickets, went into her room and told her that I had bought tickets for our trip (not even knowing if she was even aware of my presence). She nodded her head one time and within an hour she passed. I concluded that the unfinshed business was an assurance that we would take a trip after she passed.

So, is there any "unfinished business" that you can think of that perhaps mom wants to know is resolved before she leaves this earth?

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That is beautiful. What a loving memory to have of your Mom. Her awareness of the toll of your efforts and support of your relationship speak so well to her character and love for you. What a blessing.

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I had traveled across the country to see my 98-year old mother at her memory care facility when she was still alert. A week or so after I left she became bedridden and non-communicative. The day she died I was with a friend on a walk and we had left our cell phones in her car. Once we got back in the car and traveled to our lunch destination, we saw both our phones were blowing up with messages. I saw my sister, who lived in the same town as my mother, had called multiple times, as had my husband. Mother was slowly dying. A couple of minutes after my sister put the phone to Mother's ear so I could tell her I loved her, Mother died. Life and death are the great mysteries. I agree with the respondent who emphasized that how you treated your mother during her life is the most important thing.

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It's not going to be long. She'll probably become agitated and you'll need hospice to give her something to let her sleep away. Just lost my mom in October 2024.

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Prayers to you & your Mom..

My Dad was in that state for 3 weeks.. No agitation..Slept quietly, Cheyne-stokes breathing pattern at the end, morphine, then passed approx 2 hours latter..Mom slept for 4 weeks, no agitation, cheyne-stokes breathing at the end, then passed an hour later..

Hospice guided us with EOL journey..They were a Blessing for myself & the family..🙏🏽 🕊️ to all..Tough journey, we know😢💔

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My mom was 90 and in hospice. She did not eat or drink for 9 days. On Day 9 — even though she was completely unresponsive — I told her that I knew she was tired and weary and that she wanted to be with Jesus. I assured her that I would be okay if she wanted to let go. She passed that night.

The same thing happened to my aunt, who was in hospice. Her son also assured her it was ok to let go if she wanted to do so, and she too passed the same night.

Our loved ones often hang on if they are concerned about those they are leaving behind.

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I was once told to let your loved one understand that it's okay to pass. Jesus will be there for her. Just telling them that it's ok to give in is all it takes. I've actually seen this occur. My friend told her husband to relax and return home to Jesus. Within five minutes, he was at peace.

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A doctor told me recently that not eating is normal and expected at the end of life.

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Women take longer to die then men. If your mom is stubborn, it may take 5 days. My mom stopped eating, then she stopped drinking 2 days before she passed away. Your mom will go when she's ready. I was with my mom every single day. She had a fever and started the death rattle. My mom breathed that way for 2 days. She was conscious 1 day prior to her last breath. She no longer squeezed my hand and had no strength. I kept telling my mom that everything will be fine and she will be reuniting with my dad and I will look for her. I played her music that she liked also. Hospice helped with medication to keep my mom calm. Your mom can still here conversation. I am sorry about your mom.

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♡I just wanted to say, hugs & prayers for you. I don't have the answer to this but, my heart goes out to you. I know some are saying being there for her for her last breath isn't important but, it is to me. I would be devastated if my mom was at her end of life, and I knew this and wasn't by her side when she passed. Or, at least, could get there some minutes after she passed.
Work will work itself out & chip off some of your vacation time & or, personal days if you have to...but, you'll be happy always knowing you were there with your mom when she transitioned!

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In the last few days of my wife’s life she went to sleep and did not wake up. She had not eaten anything for about a week just juice.

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Poor dear, My heart goes out to You, I just finished , what you are presently going through. You can read my post July 13th , "Guilt seeping in"
My wife Nancy 79, passed , June 26, after 16 days of not eating or drinking anything. The first day she didn't wake, her eye's were glassed , barely open, wasn't eating or drinking the nurse said she won't make the weekend. this was Wed. June 11th ,well,16 days later she passed.

During the last two weeks or so, no food, or water, just morphine every hr. and anxiety med's to keep her as pain free as possible, she was in severe pain from arthritis , hips to her curled toes , & neck , head bent over so her chin was on her chest. Nancy was bed bound for over 10 months, bedridden for the last 5. She had a catheter, worked most of the time, had a few UTI's. Her bowels were lessening, but even though she wasn't awake, every time I or the nurse turned her on her side to clean & change her she would grimace.

This has been along, slow deterioration, started a year before the pandemic, with congestive heart failure, & pneumonia, I took 5months off FMLA 2019 & 20; In 2020 quit my primary job, to stay close to home & worked locally. 2020 into 2021 she was in intensive care for 6 days, with the virus & congestive heart failure. The first 9 months of 2022 she was in hospice & recovered, Praise God. 2023 Nancy went Into the hospital for 13 days , lost 3 1/2 units of blood, almost bled to death , from her blood thinning med's. Her hips were really starting to bother her , walking was painful , couldn't get in or out of the jeep, without much pain. The first first quarter 2024 was relatively calm, then she couldn't make her doctor appointments went on pallative care for a short while, THAT nurse saw things, highly suggested hospice again in September. That's when I stopped working altogether , and became a full time care giver, for the next ten month's. Like I said in my other post " It's my job, what I signed up for"

Our Hospice nurse , cut her water off when she couldn't take it in a straw. Said it will be a week or so. Like Your Mother , it could be three weeks or more, seeing she's taking a little H20. I do feel Your pain, watching a loved one passing slowly, it seems they keep going & going & going is extremely painful, Your a good Daughter, It won't be long, and you'll be glad you were there doing all you can. I could be wrong, but I think women have it a lot harder than men as a caregiver. Don't get me wrong it was tough, but women are more sensitive, nurturing , it's part of their DNA.As I was recently told, I'm proud of you, for hanging in there, MOM''s not quite ready to go' Gods Not ready to take Her. May The Lord Bless You & Fill You with His Peace

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jeepgirl0909: Prayers forthcoming for this most difficult time.

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I'm so sorry this is happening like this. My father in law did not pass for 21 days. The hospital said it would be 3 or 4 days. Praying for peace at this difficult time.

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I hope you have family that can give you some respite from your vigil. I am 76, and I remember my grandmother in hospice many years ago. She refused the feeding tube my aunt (her daughter) wanted her to have, but they tried anyway. It was awful, and they finally stopped trying to put it in. After that I remember it was a month, maybe more, before she finally passed. Before she entered hospice, her minister came, and we all had communion and a service - and my grandmother said her part and said the minister's part with him! During that time, she had very little water, slept all of the time, and never communicated. I had been coming from out of town twice a week to read to her, sing her favorite songs (well, that may have been just as difficult for her as suffering through the feeding tube, but I knew she appreciated the effort, just like she appreciated my awful piano playing when I was a child!), and just talking to her. I had visited her the morning of her last day, and then my aunt visited her in the afternoon. I was told that while my aunt was there, she passed. My dad (her son) and my mother (who lived nearby), and my aunt who flew in from Florida to stay, and me took turns sitting with her, but no one was with her constantly. Give yourself some space, some rest, and nourishment, because no matter what - it is out of our hands as to when life ends. She knows you are doing everything you can for her, and I am sure she does not want for you to endanger your health over something that is natural. Birth and death are natural. She is not suffering now; her body is just waiting to stop. For your sake, I hope it will not be much longer. Her love for you and your love for her will always last and that is the most important thing.

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My mother is at end of life, but is this normal?

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