How can I keep going?

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How can I keep going?

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My 96-year-old mother has been dying for days. When she was found unresponsive at her ALF late on Monday afternoon, my brother went to the hospital and was allowed in because of her deteriorating condition. He stayed all night. On Tuesday, we got a call from the hospital, asking if we lived close, and we better get over to the hospital now--she was crashing. We went, stayed until 12:30am and finally asked the staff what they thought. They, of course, couldn't say for sure, but the gist is, she was more or less "stable." She has been put on comfort care instead of curative, which is what she would have wanted. We went back yesterday, sat for several hours, not much, if anything, changed. I am not complaining and I apologize if that's the way it seems. I'm just getting weary and don't know how much longer I can go in and watch my mother slowly die. Does anyone have experience with this?

End of Life End of Life Signs Grief

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I'm so sorry for what you're going through. I went through something similar with my Dad; he was actively dying for about 10 days in his ALF, under hospice care. In fact, his vital signs were very good & stable right up until a couple of hours before he passed away. Your mother might be hanging on because of your presence in her room..........hospice explained to me how that sometimes happens. So I took everyone out of Dad's room right after I was told that, and we went out to eat. That very night is when he finally passed.

Sending you a hug and a prayer that your mom transitions quickly and with pure peace and no pain

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Please see above post that is directed to you.

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Is your Mom currently awake? If she is peacefully resting and on morphine sublinqual or by IV time will hold little meaning for her, and whether you are there hours or minutes won't make a lot of difference for her. I am hoping hospice is now involved; they give better support.

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She is on IV morphine and seems completely unaware of anything. I've just read so many accounts that say something like "YOU'LL BE SORRY" if you don't do everything you can, make every possible visit, before she dies. I don't want to have regrets, but seeing her like this is also a regret and is not something she'd want, even if she is aware. If there was the slightest spark of recognition, of course I would go. But there's not. I am only there watching her die. Hospice has been contacted but don't know how quickly they can become involved, under the pandemic staffing.
Thank you for your response. It helps.

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This is actually a reply to lealonnie1. I put it in the wrong place.
I have heard of this so many times, and experienced it in my own family. I wish I knew for certain what her wishes would be. Does she want companionship at this time or does she want to spare us the pain of watching her die? Again, as I said above, if I knew what would help her, I would do it-regardless of how it effects me. But if I'm only getting an experience that I can never un-see, with no benefit to her, what is the point of going?
Thank you for the hug and prayer--I need both.

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Only the Good Lord knows the day and the time that He will call her home, and if you're there when it happens , or you're not there, that is how it was meant to happen. Our loved ones never die alone, as God not only sends His angels, but also other loved ones that have gone on before us to take us to our real home. Please take comfort in that, and please take care of yourself, as you still have lots of living to do yet. Praying for God's peace and comfort for you during this difficult time.

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Alpha, you have to do what you feel is right.

People saying you'll be sorry is so wrong.

Only we know our personal situations and what our loved ones would want for themselves and what we can deal with. I don't believe that we have to watch someone die to prove our love.

I am sorry for your loss and I pray that God grants you wisdom and courage right now to do what you are supposed to do.

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It does wear on you. My Mom was on Hospice for a week before she passed and no, I was not at her side the whole time. She was resting comfortably. The family came in during the week and said their goodbyes. My nephew and I went on her last day and sat with her. My nephew had been living with her and she worried about him since both parents were deceased. He suffers from multiple disabilities. He told her he would be fine. I sang her favorite hymn. We said goodby and left. She was found 20 min later by the nurse. So you could be there all day and leave for a minute and she could have passed. I do not regret not being there all day. Its stressful sitting around in a room shared by 3 other people.

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You don't need need to be there every minute. You HAVE been there. You have said goodbye. Going is hard on you and it is NOT necessary. People who want to judge you for this?? Who the heck do they think they are?? They don't get a vote, ya know?

Sorry that your mom is passing. Hope it is quick and as pain free as possible.

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It was different for me because my mother died at home, so I was in and out all the time this was happening with her. I slept on a trundle bed just outside her door, about 6’ away, with us both waking every 3 or 4 hours. She still managed to die while I was asleep. I am quite sure that it didn’t matter to her – she wasn’t really conscious at all. We were together in love, with or without angels. Do the best you can. Keep yourself in good shape, because the days after death are very stressful, and you need to be able to cope, for all your sakes. Best wishes, Margaret

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My mother passed away about 2am this morning.
Thank you so much to everyone who took the time to post. Truly, every single response was helpful and made me feel less alone.
This is a wonderful forum.

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I'm so sorry. I just posted, then scrolled down and saw your update. I hope your mom died peacefully and that YOU are at peace. You are a great daughter!

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Alpha, I am so sorry for your loss.

May God grant you grieving mercies and comfort during this difficult time.

Great big warm hug!🤗

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Sorry for your loss.🧸️

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All my sympathy, and best wishes for the days ahead. Yours, Margaret

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Yes. My mother died age 90 but the last five were very hard on me due to end-stage Alzheimer's disease.

It is called life, and death is a normal part of that. She died 8 months ago and the pain and suffering is all on me. You never get over it. Mom never suffered even while dying. her feeding tube kept her physical needs taken care of so she never did suffer. She actually died of other natural causes not Alzheimer's.

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Just wanna give you a big warm cyber hug! I have no advice sorry, but totally just wanna support you during this exhausting and upsetting time.

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And I also give you a big cyber hug. This is a difficult time, and you have to take it day by day. Take some time for yourself to rest so that you don't get worn out. You also need to stay healthy. My mother's assisted living facility is able to handle hospice type care in their facility. My mother is allowed to stay in her own apartment. We have a "no hospitalization" directive. There are many staff there who are taking care of her and who know her. Would that be a better solution if your mother's facility can handle this? You'd probably need a doctor to have her released to hospice. You'd have to check with her facility if they can handle this. All the best to you, and take care of yourself.

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My Dad lived with me the last 5 weeks of his life. It was a lot harder than I thought it would be. I actually work in long term care part-time. We had caregivers in when I went to work. Of course, I didn't know Dad would only live 5 more weeks so I set things up so I could continue to work. The weekend he died, we knew he was dying. My brother was at my house, so I still did my shifts. It was actually a relief to focus on someone else's problems, although I feel bad now that I left Dad with my brother who stayed on his phone most of the time. But one thing I've learned over the years is that there is no ideal end-of-life. It doesn't happen like in the movies. You give as much as you can but that is all you can give. Do something nice for yourself to get replenished. I would say that you can't change what is going on with your mother, but I know that is not true. Sometimes people are just waiting for their family to say its OK to go. Even if you don't think they hear you, they do on some level. That is what I had to do. It was the last thing I ever said to my Dad. No one wants to say it, but it is sometimes the kindest thing you can do and a great expression of love. Best wishes to you!

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You’re not complaining, you’re tired, upset & grieving even though your mom is still with you. End of life is really hard. I found that talking to them, playing soft music or ocean sounds helped to relax them. I reminisced and would tell funny stories even though no response. A lot of times end of life will go 1 of 2 ways. 1-They will not die with you present. 2-They are waiting for someone, to hear their voice. I know this may sound crazy but it’s true. Go to your local Hospice website, they have great information on what to expect. I’ll be praying for you.

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I am so sorry you are going through this. There is NOTHING harder than seeing a loved one die...especially your mom. I totally understand what you are enduring. I stayed by my mom's side in hospital hospice for 13 days and nights. I tried to sleep at night with two hospital chairs pulled together to no avail. Each day I secretly hoped the Lord would take my mom to end her suffering. Near the 13th day (Christmas Day, actually), I held my mom, sang her a song (her favorite), told her it was okay for her to go (as I did daily) and told her she was going to a beautiful place; one where's no more pain. My mom passed away seconds afterwards and it was so peaceful. To be honest, I felt guilty for wishing the Lord to take her but it was overwhelming. I was a basket-case daily.

I know most people don't understand. All that mattered was I was there for my mom and know she was not alone.

If you need to talk...please reach out to me. I get it...completely. It is exhausting and something one cannot explain. It's torture on the loved ones. I'm here for you even though you don't know me.

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I can totally relate to this and having the feeling that you want your mom to pass peacefully to end this slow death. My mom died two months ago during this pandemic and she had been in her memory care facility and we did not have the option to spend hours with her while she was dying. They let me in for a brief time to say my goodbyes and then she died 4 days later. I too reassured her it was okay to let go and that I would make sure my dad was okay. I now feel this sense of relief knowing she is not suffering anymore. I do really miss her though, but it would have been selfish for me to want her to keep on living when she was basically living in a body that could not function on its own anymore. My heart goes out to everyone who has to watch a parent die a slow death. May you find peace.

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As an RN, I have been part of caring for dying patients. Some patients hold on until all family and friends can visit. Get those people in to see her. Some patients hold on until they know all their "business" is completed. Find out if she has tasks that still need completing and ask family to promise to do them. Some patients want family gathered to say final good byes while others prefer to be alone. I had one patient that held on until last rites could be administered. The gist is that most hold on until their "final work" is complete and their bodies have worn out.

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As our hospice doctor told us, it is part of their story.
My mom held on forctwo weeks. We thought she was waiting for my brother, but he came and she stayed.
My dad sang to her while bring her caregiver. In day 14 of hospice, he told her that he had no more songs to sing unless she could tell him what s g exwanted to hear. She passed away 4 hours after we left.

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I’m so sorry you are going through this, it must be one of the toughest things to see in your life, letting go of a loved one is difficult. Your allowed to vent, it’s exhausting.

Anyone with a parent with a brain disease is slowly watching their loved one die on a daily basis. it is sad and hard to accept that part of life.

Keep going, be there for her during her last days, you’ll be glad you did in the end.

God bless you and stay safe.

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No one has an "Expiration date" tattooed on their body making it easy for you to know ...how long.... (and a good thing to)
I was told by Hospice that some people want to die alone and will wait until relatives leave the room to go to the bathroom, get a bite to eat, take a phone call or even fall asleep.
You are exhausted mentally, emotionally and probably physically, sure you want to know more.
Relax, hold mom's hand. Tell her you will be alright. Thank her for teaching you all that she did. Give her a kiss.
((hugs))

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I know this is painful and I'm sorry for what you are going through. I stayed with my dad in his hospital room on a cot for 2 weeks. I left to go home and eat and he died within 30 minutes. I thought it would be a relief when he finally passed, but it wasn't. I know it's hard, but hang on and use this time to talk to her and say what you want to say or maybe reminisce about good things that have happened in your lives. Once she is gone, she is gone, so use this time wisely. I know it's hard.

Take care.

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It took three weeks for my mother to pass away once we knew it was happening. She held on far longer than anyone thought possible. Though members of our family were there a lot, we couldn’t be with her around the clock. She was deeply asleep and not communicating at all and in the end she was alone when she died. I’ve come to believe that is okay, many people who are dying aren’t aware anymore, they just slip away. There’s no dramatic final moment like on tv. I’m sorry you’re dealing with this. If you can’t be there, gift yourself with knowing it’s okay. I wish you peace

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I feel as a social worker with hospice experience that there is a psychological component to dying. The first thing I would suggest is that giving permission to die is important. Saying goodbye is important too. Is is possible that she is concerned about leaving someone? If so, please contact that person and have them talk to her via phone. A person who is not eating or drinking cannot hang on forever although it feels that way. Sometimes people prefer to die alone because it hurts both of you to go. It is okay to take a breather from extended visiting. Maybe go for a few minutes or take turns with your brother. My mother had constant family presence when she was dying. She died in a 4 minute window when she was alone. There is no right or wrong in this situation.

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Maybe someone has mentioned this already ... i havent read every answer.

your mother may be “asleep” but you dont know for sure what she can hear.

tell her you love her and if she is ready to go to feel free to do that. Talk about good memories. Keep the bad stuff down the hall in the waiting area unless you feel it is helping her to be comfortable and ready to die.

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I didn’t stay, and I have never for one second regretted not being there.

My mother was a fiercely determined woman, and if she didn’t want me there, I did her no good by staying.

I sometimes think that these “vigils” are a little self serving on the part of the living. Each situation is VERY DIFFERENT though.

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Visit when you can, but yo do not have to be there every minute and every hour. Your mother will die hen she dies, whether anyone is with her or not. There some good suggestions here about talking to her even though she is unresponsive. Let her know she did a good job of being your mother and assure her you (and your brother) will be okay.

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This is a great answer. My mom died in February and I had what I guess you would call "a few days notice." I thought she was recovering from a respiratory cold - maybe even Covid - it wasn't on radar then. Anyway, she wasn't recovering and then her BP started to drop so I started to prepare. Her one helper who had worked in hospice estimated 5 days; she lasted 2. I understand the excruciation part. You want her to hang in there, but then when you know the inevitable, you just want it to end now for everyone's sake. Basically you just have to plan to gut it out, knowing it will happen sooner rather than later. Praying for peace for both of you.

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I know how exhausting this can be. I am an only child and my mom went in and out of end of life symptoms for 20 months before she finally found peace. Hospice was a God send. Before she died I let my mom know that I would be ok and how grateful I was for all she had done. Please get rest when you can and make sure you take care of yourself at this time. It is easy to forget to eat right too.

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My husband and I moved back home when both our mother's needed us. We prayed over this decision and decided it was the right. My husband's job had been downsized and we thought maybe this was God's way of letting us know we were needed 2000 miles away. He moved 2 years before I did as I was also caring for a young grandson where we were living. Somehow, he managed to both work and take care of mothers on each end of MS. I came 2 years later and moved in with my husband and my mom. Not long afterwards Katrina hit and Mike's mom was terrorized enough that we moved up up to north MS where we were. She lived with us for a short time before finding a house and moving in that.

I can't tell you dealing with two 90+ year old ladies was easy, but I do believe it was the right thing to do. Neither of our sibling volunteered to help. I know it's not easy to watch a loved one died, but I think you will be thankful that you stepped up to the plate.

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A hospice chaplain is available. Not the hospital chaplain. You need him. Call him.

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