Jump to content

This 'not knowing when' is killing me


Recommended Posts

Most of you know from my recent posts how things are. Well in the last few days, mom has been sleeping much more than normal and eating/drinking so little. As of yesterday, she was down to about 2 bites of food and a sip or two of water..and she threw that up. None of the nausea medication seems to be helping (even though the nurse is trying everything; disolving tablets, etc). Today has been really strange. She threw up when she woke up, and then has been sleeping all day...I can wake her up but she falls asleep in about 20 seconds after that. She's never slept this much before. Is this just the dying process? I know they say that they start to sleep a lot...but does that mean 2 weeks, 1...who knows??? She's ate one cracker and 1 sip of water. The nurse says she thinks that the mets are pressing on stomach, everything (they were already pressing on her spine, that's why she can't move anything below her waist). She's being kind of general about time and I'm so worried that I'm not going to be here when she dies. I just feel like I'm guessing here...anyone else ever felt that way that lost someone to this horrible disease? Can anyone tell me how this ending part went for them (if it's not too painful)?

Link to comment
Share on other sites

Every situation is different. I thought mom was tired as a result of radiation and exhaustion (the decadron gave her insomnia, I thought it had caught up with her.) I retrospect the extreme tiredness may have been due to the pneumonia we didn't know she had or it could have just been the body shutting down.

How it went for my mom, Sunday tired but ate dinner with us talked good times.

Monday tired, sleeping sitting upright on the couch but worked that morn.

Tues, practically out on her feet but did actually go to work that day!!! But her coworker said it was clear it was a struggle for her to stay awake.

Wed called her at 9:30am, she answered the phone, said I woke her up. By 12noon I was at her house she was labored breathing and I called 911. She slept most of the 4 1/2 hours in the ER and basically slept until Thurs at 7:05am when she left us.

Link to comment
Share on other sites

It seems that my mom pssed within 4 days of not eating or drinking. We did moisten her mouth with water from a "toothette" (sponge on a stick), but swallowing was no longer possible. At this point all her meds were in liquid drops placed under the tongue or between cheek & gum, or a dissolving tablet.

However, no one can predict the amount of time a dying patient has left. This is why the nurse was so vague - she just doesn't have the answer.

I truly believe that whoever is meant to be there when a loved one passes is there. So that doesn't mean you have to keep a bedside vigil, though you could if you chose to. But sometimes the patient chooses the moment you are out of the room, or you turn your head or answer the phone...My 10-year-old nephew so wanted to be with his grandma when she passed, but she left us in the wee hours of the morning. I wonder if mom knew and hung around to be sure he was not there to spare him the trauma.

I know we all have visions of how things will go. But the reality is that it nearly never happens that way. I wish my mom had not been so out of it so we could have had some last, meaningful conversations, but that was not to be. She was in my house, with my two brothers and one sister-in-law sleeping in the same room, and me and my DH and girls upstairs, yet she passed when we all were asleep. We were all present, just not aware.

So I guess my point is, don't get too emphatic about the moment. It's the moments leading up to it that are important.

Are you thinking of taking time off of work?

My heart aches for you at this time.


Link to comment
Share on other sites

Deb and I had a small dinner Jan 22 2006. I left her a t 9 Pm and at 245 all signs were normal ( Vital) and at 305 am the hospital called me and said it was over. Cherish yesterday. Enjoy today and Pray for tomorrow. Always say "'I love you", because you never know when it will be over. It will get a lot worse before the sun comes out.

Link to comment
Share on other sites

As others have mentioned, there is no easy way of telling when "when" is -- even as trained as hospice is, they were surprised and not expecting the passing both times I have been through this with my parents.

My father was having some fitful breathing and I called hospice to do something to be sure he was as comfortable as possible. Turned out they weren't administering some of his meds properly so we got that fixed (he had brain cancer). He was supposed to have another 2-3 days left from hospice estimate, but he left about 2 hours after hospice made him more comfortable that evening (and after I had just left his side too). He was sleeping a bunch too, but one day he'd eat very little and the next day he'd get a bit more alert and eat fine for him.

My mom changed her fatigued and sleepy behavior as things neared (in hindsight): she actually became like the ever-ready bunny -- super awake for periods of time, eating/drinking fine for her, active in her wheelchair (used her feet to just cruise everywhere despite her swollen ankles and such), confused as all get-out, angry and nasty with me to no end (long story) -- she just left suddenly in the middle of one night after falling out of bed (with about an hour or so of up and down O2 sats and no other symptoms) -- no one expected it at that time. Interesting that the nursing home was dialing the wrong phone number for me that night when this happened (and I had my number on a dry erase board hanging on the wall right by mom's bed too). Go figure.

Be kind to yourself in this process and try not to worry about "when." If your heart is set on being there when your mom passes, ask hospice when it would be appropriate for a vigil. Just know that the heavenly father has control over when and how -- and it will be OK, no matter how it seems on the surface.


Link to comment
Share on other sites

I think the most noticable change was that my moms breathing became shallow and very few breaths per minute.

The hospice nurse said that we should let my mom be alone (mom indicated for us to leave after a few moments of visiting)

She said my mom was fighting to leave and every time we came in to talk to her or touch her we were pulling her back. It was painful for me and I wish now I would have at least sat in her room. I was there and walked away for a moment and when i returned she was gone.

This pharmaceutical site has alot of information on end of life. I have posted it before and will reiterate, it is not for everyone. There is a menu on the top with different subjects.

http://dying.about.com/gi/dynamic/offsi ... h008a.html

I am so sorry you are having to go through this. You are in my prayers.

Link to comment
Share on other sites

Yes, I'm working from her home on my laptop (my company is really great). So, in a sense I am taking time off. She sleeps all day now. I don't know what else I can do because she doesn't like me to talk to her, she just wants to be left alone. I've realized that the ideas I had about my mother and I coming to some understanding or thinking about good times just isn't going to happen because she won't let it.

Link to comment
Share on other sites

Hi there,

My neighbour went threw everything you discribed, and yes a person can linger in that condition for a few days to a few weeks. Everything the nurse is telling you is true although it is a guess. It's an educated guess from people before her ...

Sorry for you and your torment in all of this ... I wish it could all be much more simple/memorable than this for you.


Link to comment
Share on other sites

I also wanted so badly to be there when mom passed, you know, many people say "I was there holding her hand." Well, I was and it did give me alot of peace to see how peaceful death can be.

My mom is different bc she was in a coma for days before she passed. Her brain tumors were causing so much pressure in her brain and that it probably what caused her coma. Your mom may be different. I asked you somewhere else (maybe a PM), but does your mom have breathing problems or mainly just pain?

Link to comment
Share on other sites

She hasn't had any breathing problems yet...just pain and the liver/'whatever else is there now' mets pressing on her spine and her stomach/diap. because she throws up anything now. I've noticed while she's sleeping that she will take a giant breath and then some really shallow ones and then it looks like she's not breathing and it will start all over again. She won't let me bring her one friend here and my dad (her ex-husband who she said she wanted to make peace with about 2 months ago and keeps putting off seeing him), so I guess this is the way she's choosing to go.

Link to comment
Share on other sites

Reading your post take me back four months to Dad's death but if sharing his/my experience can help you in any way I am more than willing to do so.

He too was vomitting each and every time he put a bite of food into his body and for days prior to his admission to the inpatient hospice facility...even when he didn't eat. It was horrifing to watch and the effect/impact it had on his body was very physically visual. Once he entered the inpatient hospice facility they were able to control the vomitting very well with a cream (something their pharmacy mixed that consisted of several anti-nausea meds) that they applied to his wrist twice a day. While this did not stop the vomitting if he ate - it did slow it WAY down and did not in any way effect his ability to remain alert! Maybe this is something can ask about.

On Dad's second day in hospice the nurse pulled me to the side and asked me about my thoughts on how long Dad might have(this is the first time I had actually allowed myself to say out loud that he was dying)...my guess was two weeks and the nurse shook her head in agreement. She explained that his vomitting was a sign of his body shutting down and that we should not encourage him to eat any longer but rather find other ways to provide "comfort or care for him" such as helping him shower, message, taking him out to put his feet in the pool (which he loved to do!) etc. She said as long as he continued to eat, rather than his body digesting the food....he would simply continue to vomit. She said some people continue to want food (for the taste) and if this was the case we could have Dad chew and spit the food out rather than swallow it...but only if HE wanted to do so. She explained that often times eating is worse for a patient at this stage than not eating... it may cause congestion, pain etc. She explained that people can (and do) often live up to a month with no food what so ever. Funny that on the very next day I took Dad to the surgeon to have some staples removed and in the car on the way back to the hospice facility he said "they (the hospice staff) do not force me to eat.. they simple offer and let me eat what if any I want... I like it!" ..I took this as a hint that the nurse had been right and Dad too was ready to no longer eat.

During the conversation the prior day the nurse had said that Dad was in the "pre-active stage of dying" and that if one thing changed it would be a "big change" and that any change could result in his death. We talked about my wanting to be there when he died and she,like others here, pointed out that only God and Dad are in control of that - that I should prepare for the potential that he might die when I "just step out of the room for a second". However, they would monitor him very closely and would point out any changes (especially "big changes")that would indicate that he was in an active stage of death to us immediately. She explained that when this time comes she would recommend that we gather anyone who wants to be there and we as a family could decide on when or if to begin a bedside vigil.

Dad's big change (huge change in breathing and level of alertness) came Father's Day during the wee hours of the night..during the morning hours on Monday he was very lethargic(something new for him as prior to this when he was awake he was VERY alert and engaged)- by late afteroon he was having longer and longer periods of no breathing ("Cheyne Stokes")between breaths and was almost totally unresponsive (other than raising his eyebrows when you talked to him,as if he was trying to respond and just couldn't figure out how). Around eleven that morning Dad suddenly reached up as if to take someones hand and pulled himself out of bed as if he had never been ill or in a weakened state. Afraid he might fall.. I said "Dad...where are you going?" I had to say this twice and finally he replied "oh.. no where" and laid back down. I really do not think that he even knew this occured as he immediately went right back into what appeared to be a deep sleep. We placed a monitor on his bed just in case this might occur again with no one in the room. Throughout the remainder of the afternoon, evening and into the night our family all gathered and each person spent some one on one time with Dad saying our final goodbyes. They (hospice) continued to give Dad pain meds and Ativan (which seemed to really help with aggitation and restlessness)throughout the night and we continued to see longer periods of no breathing between breaths and less and less response from Dad when we talked to him. As someone else had mentioned they told us to not stroke Dad as it seemed to be very aggitating to him - his breahing became very loud and almost seemed like a painful/sad moan. The nurse said he was trying to let go but each touch brought him back..as hard as it was not to do this..it did seem that once we no longer touched him he was able to be more peaceful. We all just sat either in his room or out on the little patio outside his door and talked about growing up, things that were happening in our lives now etc. Around 5:00 a.m. Dad no longer had a radial pluse and the nurse indicated that it would not likely be much longer. At 7:45 the nurse came in and check him again and said she was going to give him a bit more medicine at 8:00 am -- I stepped out to tell SM who was on the patio what the nurse had just said and noticed my sister out of the corner of my eye..my sister who is an RN quickly move from the chair at the foot of Dad's bed to sitting beside him on the bed. I rushed back to the room and motioned for SM to come quickly...Dad drew his last very shallow, weak breath will all of us standing at his bedside, holding hands in a circle around him on the bed. After a few minutes, one of my sisters went to get the nurse and she confirmed that while he did have somewhat of "flutter" of a heart beat for a few seconds..he was indeed gone. It was the hardest moments of my entire life..but I would not have missed one second of it! They told us to spend as much time with him as we "needed" and after about two hours they called the mortuary for us. We were with him when they came and watched as they drapped him in a beautiful quilt and took him from the room to the hertz. As sad as this all was there was also a very comforting sense of peace amoungst us.

Talk very frankly and openly to hospice about the fact that you want to be there and what to expect. Ask them about a flyer that goes through the stages of "pre-active dying" and "active-dying". If they don't have anything PM me and I will send you some information. The most important thing (in my humble and not so important opinion) is that you can do is exactly what you are doing now...be with your mother and just love her for who she is!!!

I'll be thinking of you and praying for peace and comfort for your family. There are MANY (way too many) of us here who know from experience just how incredibly hard this process is.... we are here if you need anything.

Peace be with you,


Link to comment
Share on other sites

I am so sorry you are going through this.....

I also understand your question. It was the same question that I kept asking when Jim was dying. I recall a nurse at the hospital giving me a booklet about the dying process that described specific physical symptoms that happen at each stage (and approx. time frames) but not everything applied. I guess it is truly unique to each person.

Jim went into the hospital for the last week of his life. He was undergoing brain radiation and I suspect it was the swelling that made him lose the ability to talk, walk, or open his eyes. I ambulanced him to the hospital and in essence, sat with him waiting for him to die. I kept asking when. His wonderful doctor told me probably about a week. Each time I asked, he would give me his best guess again, and he ended up being correct. Jim lived 1 week. The nurse guessed that Jim could live in that condition for multiple weeks or a month. From the time he entered the hospital, he wasn't able to eat and swallowing was difficult. Within a few days, he had a catheter and all meds were via an IV. I watched the urine output as that was supposed to be a sign that when there was no more, it was close. Jim was still producing urine when he died. I was so afraid that I wouldn't be in the room when he died, but all these posts that remind us that the exact moment isn't the important part are right. It was all of the love and moments of our life that led us to this part.

Your Mom knows how much you have loved and cared for her, even if she wasn't able to express it. My thoughts are with you as you live through this most difficult part.


Link to comment
Share on other sites

Just a thought about your mom making peace with others before she goes. My husband's grandmother had congestive heart failure and chose to stop taking her meds knowing that it would result in her death in a few days. Although she was in contact with her children it was not a close family. But many visits and opportunities to make peace. Then she died, and with plenty of warning. Since then the bitterness and animosity has surfaced. So even if your mother were to see these people it does not guarantee that it would be a peaceful reunion, although it could be. But if she feels at peace in her heart then I would be happy with that.

Hang in there!


Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Create New...

Important Information

By using this site, you agree to our Terms of Use. We have placed cookies on your device to help make this website better. You can adjust your cookie settings, otherwise we'll assume you're okay to continue.