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I know part of this has been asked and answered, but I feel like mom is on a different plane all together. She is 91 and suffers from severe dementia. She has not physically moved herself in anyway for over 6 years. She has been transported by a hoya lift during that time. She has been incontinent for that amount of time as well. She is in her 5th assisted living facility. She has been on Hospice 2 previous times and roared back to life but now on her 3rd time with them, this is different. She has lost an average of 8 lbs a month for the past 7+ months and is down to 114. She is bedridden now. She has had skin ulcers and breakdowns for over a year and then they are multiplying aggressively. She has all but stopped eating and drinking although yesterday she was able to sip a lot of water through a straw indicating some thirst is left. Last evening the med tech and I were talking about her experience of watching and treating her patients die. She gave me some behaviors that most people display such as agitation, or staring straight up to the ceiling or voicing the pain of dying. All of which happened last night. My mother who has not been able to move for years was able to pull herself up off the pillow, trying to sit up or reaching for something in front of her, but quickly fell back to the pillow. This happened about 4 or 5 times. I have not seen her move like that for years. She said ouch and ow, while just lying there, voicing pain that was not obvious to us, but she felt somewhere in her body. She does not talk anymore so this was new. But the more prevelant signs of dying are not there yet. Such as the apnea breathing, or the skin molting. Her hands are still warm. She does not have a temperature. She is not in a coma. She is sleeping a lot more, but she still has her eyes open at times and she responds sometimes when you call her name with her eyes moving towards the voice. She looks so frail and helpless and it is hard to watch. Every care giver at the facility is saying she is so strong and they have not really considered that mom is really dying. Hospice does though. I guess I just want to know how much longer can this go on? As with many of you, that are the single family member who is left or willing to oversee the care of their loved one, you understand this. I am a single man, never married with a brother and sister who do nothing. So talking to them is about as productive as watching paint dry. It seems many families are similar. Anyway, it is so tough and I have been with her for over 8 years taking care of all of her health needs, paid her bills, managed her money, insurance, prescriptions, doctor's appts and on and on and on. Believe it or not, that was the easy part. This is hard and I want this to be over. But I really just don't want her in pain anymore.

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The hospice nurse told me this....

When you can see the downward changes from one month to the next...she has months left.

When those changes come fast enough to see the difference from one week to the next..then you know there are only weeks left

When the downward changes are noticeable from one day to the next, there are only days.

I was surprised at how fast everything happened when the changes were day over day.
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Hi. I'm back to say that my mother passed away tonight. The hospice nurse came in and concluded that my mother was hours if not minutes from passing due to blue fingertips and erratic breathing. We gave her more morphine and then it was suggested to my brother, sister and I to leave mom to pass on her own in peace. She knew from the description of our mom and us that it was more plausible that mom would want to do things on her terms. And she was right. Less than 20 minutes later, after we told mom we would be in the next room and it was ok for her to go, we got notice that mom passed away. It was sad for us not to be with her for her last breath, but if that is what she wanted, she got it, her way, right to the end. So I am at home now, and my brother and sister are leaving in the morning. Thank you all for your words of kindness, wisdom and support. This is a great group of caring people.
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Hi everyone. It is 11:21 pm and my sister and I are sitting vigil at my mother's bedside. We have been here since 9am. We have taken breaks and gone home, showered etc. We ordered food earlier. Mom is defying all logic and continues to breathe on. She has had the death rattle earlier today, but with a certain medication for that she stopped. She has gotten morphine every 1.5 hours or so. She has not awaken. She is comfortable thankfully. I am interestingly serene now. Earlier when I was alone with her, I played our favorite Christmas song, O Holy Night, and cried while telling her it was ok to go. That was my tender moment with mom. I am not wishing her to go at this very moment, but if she does, I will be fine. I have had my eight years with her. My sister is more attached at this point. She is timing almost every interval between breaths. It is all so fascinating to watch this process. My mom's heart is very very strong. It just keeps going like the energizer bunny. My sister did take a break and told my mom she was not going to say goodbye because she knew my mom would still be alive when she got back. And she was. I am rambling now because there is nothing else to do. I wish all of you peace on your own journeys.
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Sdbike, My husband and I are currently in exactly the same boat as you are, only my FIL is on Hospice in our home.

These last few days have been extremely rough, with increase agitation. Last night he got himself out of his tee-shirt 3 different times, and this is new! He has been with us for about 6 weeks now, and has Lung cancer with Mets to his ribs bones. They say that often lung cancer will spread to the brain, but I'm thinking it's his very bad urinary tract infection that is causing his delusions and agitation, and we have decided not to treat, which goes along with our Hospice Dr and Nurses advice, as he is 87, and it would only prolong the inevitable, and then his Lung cancer symptoms and pain would become even worse over time, so why make him suffer with those types of symptoms. There is no right or wrong way to deal with this, as like you, we just don't want him to suffer, so we are treating the symptoms.

Last night and this morning were hell, and I pray we can get his agitation under control so he can sleep.

I never thought I would look forward to someone dying, but this is cruel and inhumane for everyone involved! I pray he passes quickly and peacefully.

I hope things are going better for you, and that your sister arrives to help you through this!

We are in this together! You take care!
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I understand , I'm glad Hospice is on board .its so hard to see a loved one suffer this torture ...my mom has been steadily downhill since my sister died a little over 4 years ago . Just make your mom comfortable, hold her hand and tell her you love her kiss her and keep her snuggled up in cozy blankets ...please know I'm glad you posted at this forum they will support you here and give you strength when you need it ...I take care of my mom alone , since my sister died , everyone was helpful at first then they all just left me to care for her alone ..I text to give them updates and the answer back is " gee that's to bad " or no reply at all. I'm,a RN so they figure I can do it all..I work 12 hour shifts ( mom has a caregiver while I'm at work ) and then I'm on my own putting her to bed , fighting to change her , wrestling her into bed ( I get my excercise that way ) , I've learned to duck and weave punches and spitting and I tell my brother and niece and they say gee that's to bad ...or ignore me all together.i have Psoratic Arthritis and it's very painful and I'm on very strong meds for that ....but mom eats , drinks takes her pills and transfers to the bed and wheelchair when she wants to ........but I understand she's not gonna be here forever ...I want you to cherish every moment with your mom , kiss her and let her know you'll be ok when she's gone. I wish I could give you a big hug and prayers I'm heading your way ...you are an amazing daughter and your mom knows that ,,,,please keep me posted 🌹🌹😘🎈🎈
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SDbike, I am sorry you are going through this. There is no answer. Just spend time with her, hold her hand, keep her comfortable (my mom's mouth was dry so I just swabbed them to keep them moist), just take it in and pay tribute to your mother as your accompany her passing.
If you feel she is in pain, discuss with the hospice staff so you will do the best you can to ease her pain. 
Often those last days in my experience you'll see random movements like flinging their arms, etc. They are often simply our body's innate reflexes.
The same reflexes that in the end eventually lead to the body giving up.
God Bless you both on this journey.
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Hi, yes Katie, that makes perfect sense and we are noticing changes by the day now, so maybe it will be quick. BTW Ohmeowzer, I am her son, not daughter. It's so funny how everyone has always thought I was a woman and not a man when I did not identify myself in a post. I guess our culture is geared towards automatically assuming such are giving individuals are always female. No offense taken and sorry I did not mention that. Anyway, my sister has said she will come be with me and mom for 3 or 4 days so I do not have to go through this alone. So that is a surprise and very nice. I told her I accept and she is coming today. The thing that changed yesterday from the days before is that she stopped grinding her teeth. The med tech said those words to me last night that something has changed today, from yesterday and the teeth grinding was part of it, but not all. Mom seemed more agitated last night too. I will keep you all posted.
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Hi all. Thank you for all your kind sentiments and hugs. I am going to continue to post here for a while as it might be useful for some people. Today is day 1 without mom, or more like without the responsibility of mom. I am grieving in a much different manner I realize than most would for a close relative that just passed. When you are watching a slow slow death the grieving process begins at the beginning of the disease. What happens after they die is a whole different process. For me, it is literally a state of confusion as my lifeline, my identity, one of my reasons for living, is gone. To put it differently, it is all about me, not the loss of my mother. It is about the loss of why I wake up and "go to work" each day. It is the loss of my sense of responsibility. The loss of having to "be on" every day in case something happens. My relatives who had the same job as me with their loved ones have spoken about this void I will need to fill. About how long it will take to decompress. It would be interesting to be in a support group to compare the different types of grieving. Such as someone who has just lost their spouse to a sudden car accident, or murder, or heart attack, as opposed to someone who loses their loved one to cancer, or dementia or some long slow death. What is it like to lose a mother versus a son. No one is the same, but it would be interesting to see our common bonds. I am on the other side of it now. Before today, I was one of you. A caretaker. I could understand and still can, what you are going through. But I have just added a different layer of experience and will build on that.
Today i am numb. I am not feeling anything in particular. I know I am not happy. But I am not sad either. I think it is more like I am just not really feeling anything at all. There is not even this sense of relief. I have planned for this period for so long, it's as if I have been living it all along and now it just is here. But in planning for it so well, it is not strange or new to me. It just is part of the plan. Does anyone out there know of any support groups for people like me who have lost a loved one to dementia and now has a huge void to fill? I have fantasized for years what I would do with all this free time. But I am just not able to even think of any of it yet. And the obituary. Oh lord, I can't even think of that yet. I really can't think at all.
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sdbike - I'm so sorry for what you're going through! You and your sister are not alone, we're here with you! Ramble all you want. I'm awake and will keep checking this forum tonight. (I'm on the West coast, just put my FIL to bed.)

Anyway, this is so tough at the end, I've been through it before, and it's so difficult, and strange, but sometimes even a peace. I know, that's not a good description. Just know that I'm thinking of your family, and I wish you peace and strength as well.
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Scott, So very sorry that your Mom is leaving you.
Having your sister there has brought you some comfort, and I am sure you are her strength too.
If the nurses advise you to go home overnight, how do you feel about not being there if she would pass? Sounds like you are both there for your Mom now.

After reading more I now understand what you meant by wondering how long.
However long, I hope it is peaceful.
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