DIS doctors...need info regarding elderly and end of life

I am no Doctor but have been with many people at the end stage of your life. If she is no longer speaking and no longer eating or taking in fluids I would bet anything it will be days...not weeks. She may be waiting for you all to go and if that's what's going to make her comfortable I am sure it's ok for you to go back and take care of her Grandbabies.

I would however be concerned about the CNA's /nurses not giving her pain medication or anything else from the comfort pack. This lady is transitioning out of this life and whatever makes her more comfortable and feels safest for her needs to be done. This is the entire and sole purpose of hospice. I urge you to call the hospice line right away..and by right away I mean now, don't wait. They are available 24 hours a day for questions and concerns. Let them know your mom's not being given the meds from the comfort pack when she seems in pain or disoriented. You are here to make her end of life the best it can be. She needs those meds unless she specifically has documentation specificying she doesn't want them.

First off let me say that my mother was a hospice patient and I work for a hospice company.

There is no way the CNAs could slow the process down. Also they should not be withholding pain medication. The point of hospice is to keep the patient comfortable -- thus pain free.

If I may be blunt -- the hospice is being cheap. They simply do not want to pay for the meds.

Your mom should not be in any pain at all. Even if she is not able to drink or swallow there are pain meds that come in a patch.

I am very sorry that you are going through this - and that your mom is going through this.. However, not giving her pain medications is totally inappropriate and quite frankly, cruel.. (I went through these battles with my late DH in a VA hospital..)

I don't mean to be harsh, but I don't care how "attached" these CNA's are to your mom.. It's cruel and unnecessary for them to put her through this because of THEIR wants and desires..:mad:

I really hope that you will make some calls immediately.. Yes - the pain medication will hasten her death - but she will go peacefully and I'm sure that's what you want..:hug:

As for the dilemna of not being there - you were there when she was still able to talk - you were able to say your goodbyes - and she wanted you to be home with your children.. She sounds like a wonderful mom and you have nothing to feel guilty about..:hug:
 
Its hard to say how long she can last, Val.

Sometimes when the vital signs start to flucutate, the end is near. Temp, heart rate, breathing, blood pressure all decline slowly, and things just shut down.

But I do agree with the others. If the doctor has ordered morphine, and your mom is in pain, the CNA's NEED TO GIVE THE MEDS. Period. Do not let her suffer.
 
my mom died in the hospice house. we were lucky that it was this beautiful facility in Simpsonville, SC, and very peaceful. i wanted my mom to die at home, but i'm an only child and she was afraid i'd be there alone and scared. she went in on a friday and died on monday. saturday she was sitting up and eating yogurt. she went to sleep and never woke up again except to call my name an hour before she died. i wish i could have heard it, but i was standing outside of the room. i laid with her and spoke with her until she passed. it was just she and i. i'm glad i was there as i've had this horrible guilt that i've lived with because when my dad was sick.. i wasn't around. i lived in the house, but i was a teenager, and i was horribly selfish. he all of the sudden died (after two years) and that was it. i never had another chance. it seemed all of the sudden. that's the sad part. he was dying for two years. i was able to tell my mom that i knew she saw him and to tell him that i am so sorry. when she died... a huge burden was lifted off of me. it was the closest i could get to him to tell him that i was sorry.

the nurses at the hospice, who were awesome btw, said that there are two types of people... the ones that linger and the ones who make way. if they're a make way type of person in life, they more than likely won't linger their way to death.

there was a lady at the hospice who i saw walking around quite often that weekend. she had been there for months. i felt a connection with her and when my mom passed, i went down to that lady's room a few minutes later and gave her the christmas tree i had bought for my mom's room. on my way into her room, i see these pictures on a corkboard. a good friend of mine and his wife were on that board. so i asked her... "how do you know Josh?", and she told me that he was her grandson. well this was all in SC, and I live in GA now, and Josh lives in Asheville. It was such a strange coincidence. I ended up seeing Josh a couple of days after my mother had died, and he couldn't believe that all that had happened. anyway, she finally died a month after my mom did. i'd venture to say she was a lingerer.


much peace to your mother and many vibes to you. i'm glad you were able to keep her around for so long. don't feel bad about what you have to do.

my FIL died the year before and never would go until he was left with his nephew. the nephew sat beside him in the hospital and watched football. he looked over, and my FIL was gone. my MIL had just left 15 before that. i think he waited b/c she wouldn't have been able to handle it.
 

I wonder if they just don't want to speed up the process by giving morphine?

That drug hastened my FIL's death, once they gave up on him (he was agitated and very upset when they lowered the drugs in order to take the breathing tube out, and I guess they didn't have any big brave orderlies to hold him down, so they just gave him MORE morphine and said they "coudn't bring him out of it").

So rather than them trying to slow it down, it could very well be that they don't want to make it come faster.

I know that I, personally, wouldn't want to spend my last days in a cloud of drugs. As much fun as demoral was after my tonsils were out, I wouldn't want to miss the last moments with my family just to play in that world. And from what I've seen of my friend with morphine, demoral is child's play compared to it.


All that said, my grandmother was in a nursing home, and a few years later she was "moved" to hospice care in the same place, and then they reviewed the records, and the normal nursing home people hadn't even been giving her the Tylenol they were charging medicare for. Once the hospice people gave her that drug, she was so much more comfortable, and everyone was glad for that.


You have to do what you feel you need to do. I will tell you...I wasn't there around the time my mom died, and it will haunt me forever. We didn't know she was going to die, it was a surprise situation involving a bleeding ulcer that was causing clear symptoms that her doctors ignored and even made fun of her for, while on a blood thinner. But she had had leukemia (was in remission just a few months after diagnosis), and I couldn't visit. I had a new job, I couldn't leave, I kept getting sick first with flu then just a cold, I couldn't afford it, etc. All good, real reasons. At the time. (OK the flu/cold reasons were solid)

And now, almost 10 years later...most don't feel like such good reasons.

So try to make the absolute best decision, thinking forward 10 years to what you might think about it...try to make the decision that will continue to be a good reason down the road.

In this case, since your mom isn't 55 like mine was, and you have a family while I didn't, and it sounds like she wants you to go, it seems that not being there is the best. I'm not saying the opposite, not at all. I just know that for me, good reasons became junk reasons with the passage of time, and I hope my experience can help you make absolutely sure that your reasons are solid and will stay solid. Regrets suck; I advise against them.


:hug::hug::hug:
 
I wonder if they just don't want to speed up the process by giving morphine?


Because that would be intentionally killing someone.

There is a difference in giving the morphine to decrease pain, and accepting that a side effect may be respiratory supression, versus giving it to speed up death.
 
I agree with everyone's comments. I just want to address this part;

I HAVE to fly back home....I have 4 kids and a full time job and I am getting grief from work.
If you work for a company with 50 employees, you are entitled to FMLA for the care of a family member. If you do not, you work for a bunch of insentitive, selfish louts. It should be yours, your mother's and your family's decision about when you should fly home.
 
/
Because that would be intentionally killing someone.

There is a difference in giving the morphine to decrease pain, and accepting that a side effect may be respiratory supression, versus giving it to speed up death.

Exactly..

When a person is in severe pain and/or can't breathe normally any longer, I can guarantee you that having morphine is a million times preferable than "not".. At that point, there are no "warm, fuzzy moments" with your loved ones.. I've witnessed it on several occasions and it's not pretty - for anyone..

And while I hate to bring it up, there is always the possibility that the pain medication isn't being administered as often as needed because sadly CNA's - as well as hospice workers - have been known to steal these meds and either give the patients something else, or nothing at all.. I'm certainly not implying that "all" of these health care workers are this way, but all you have to do is read the newspapers or watch the news on tv and you will hear about this growing problem over and over and over again..:(
 
:hug: This is all I can offer to you is "hugs"....my heart breaks for you at such a difficult time and the decision you HAVE to make--you need to be at home and your dear mom knows this
 
I think you need to fight for your mom right now b/c she can't. She's 91 years old, is agitated, in pain and is struggling to breathe. I'd be punching a nurse who withheld meds from my mom. I'm so glad that I'm the one who administered my mom's medication.

I'm also glad her Hospice House was as good as they were. I was happy to speed up the process. The lady was in severe pain. I'm certain that their increased dose of the fentanyl patch was what put her into the semi-coma, but we were at the hospice house for a reason. 99.8% of people that go into one, don't come out.
 
I am in CNA school and taking clinicals at a Rehab/Nursing home and I can tell you that in the 6-7 days i've spent there learning I have become very, very attached to the residents.

Also, CNA's can't give out meds, only an LPN can, so the CNA's job is mostly taking care of ADL like bathing, eating, oral/peri care, etc...I am sure they are not withholding meds, all of these things are very strictly charted and a nurse could face criminal charges. Was there a change in the meds on the care plan? There could be different meds at different stages.

My teacher has often said that residents/patients seem to want to die in private, and has seen whole families take weeks off from work and then when everyone leaves to eat a meal the patient decides to let go. I think they feel more at peace that way, and it sort of makes sense.

I wish you and your mom all the best, you are doing everything you can and I am sure she knows how much you love/care for her. :hug:
 
Thanks for all your posts. Talked to my brother, and he is going over to talk with the CNAs. The unfortunate part is that the CNAs were hired BEFORE my mom was terminal, and the hospice program says that they can't tell them what to do, but can only instruct the family, because the CNAs are not their employees. I explicitly instructed the CNAs to give the morphine, and my 2 brothers promise to help watch things (they live in her town).

My DSis and I did fly home- we both live on the other side of the country. After talking with the doctor, he really felt we were making her hang on, and advised us to say our goodbyes while she still could realize we were there, and then go. It was one of the hardest things I ever did- next to telling Dad goodbye. But, there was a peacefulness in mom's eyes, and she was okay. My DD17 got accepted into college with a great scholarship and received the letter yesterday, and that seemed to bring a big smile to mom's face.

Now comes the waiting- and back to work. I know about FMLA, and yes, my university has it. BUT, we have a new provost, some new policies, and they are looking for excuses to house clean. We were told at last week's faculty meeting that tenured faculty could be fired for "poor collegiality"- whatever that means! I just don't want to be the test case!

I feel okay about leaving- my brothers are there, and will keep an eye on things. I still think we should be giving more morphine, but they PROMISED they would hound the CNAs. Breathing is irregular, and the CNAs report she is "drinking the ensure", or at least 8 ounces/day. I think they actually throw most of it away. She was also having some pauses in her breathing, and more hallucinations-she was calling out to my dad and her parents last night. The time is near.....and it breaks my heart. OTH, she is no longer able to use this body, and it is time to move on. I told her that going to heaven was like the first overseas trip she took- you didn't know what to expect when you got on the plane, and you were a little apprehensive about the journey. But, once you got there, you had a blast and met really nice people. I also really believe that my dad will come to take her- he was always there for her, and I believe he will walk her home.

Again, thanks for all the good thoughts and advice. I will keep you posted when I can. It is a sad time, but we can be joyous knowing what adventures she is waiting to begin.
 
If your brothers are going to stop in, they should her the pain medicine when they are there. They should also instruct the hospice nurse to give her the pain medicine when she is there as well.

It does sound like your mom is fairly close to the end, and you are right, your dear father will come for her, as our loved ones do.

:hug:
 
. I also really believe that my dad will come to take her- he was always there for her, and I believe he will walk her home.

Again, thanks for all the good thoughts and advice. I will keep you posted when I can. It is a sad time, but we can be joyous knowing what adventures she is waiting to begin.

Don't know if this will help or not, but I wasn't at the hospital at the moment my DH passed away.. However, we had a dog that he loved dearly that died 9 months before my DH did and that threw him into a deep depression.. During those final 6 days of my DH's life I kept telling him that "Rocky" was waiting for him and when it was time, Rocky would "walk home with him".. When I arrived at the hospital shortly after my DH had passed away, he had a smile on his face.. I know it sounds crazy, but I truly believe that "Rocky" came to get him..

When your mom's time comes, your dad will be there to take her hand and lead the way..:hug:
 
Both my Mom and Dad passed away at age 90 and both went to sleep and never woke up. My Dad went to sleep an a Saturday and passed away on Tuesday morning and my Mom went in a little over 24 hours after she went to sleep. We had Hospice invloved with both of them and both were given morphine to help ease their breathing. The Hospice nurses were angels of mercy and once they became involved the stress level for everyone dropped. They were in complete control and and both my parents passed away peacefully. There really isn't any way to know except at the very end. I was with both my parents when they passed and both had quite a number of very short, deep gasping breaths before they settled down and left us.
 
Congradulations on your daughters acceptance letter that's fantastic news!


Any hospice I've experience I've ever been a part of, the family gave the medicine to their loved one. The Hospice nurses should be teaching whoever is around (in this case your brothers, on how to recognize if your mother is experiening possible discomfort. Nothing can be "not good" for her now in terms of medicine. She is transitioning and anything to help her do it peacefull will only help everyone , especially her. Your brothers should be able to take the medication giving into their own hands and well as the hospice nurse's (who should be coming daily) You are a sweet sweet daughter for doing the hardest thing you could ever do and giving your mom your blessing to go. I am happy to think of her being with all those she loves that are already waiting for her in the other world! :hug:
 
Thanks for all your posts. Talked to my brother, and he is going over to talk with the CNAs. The unfortunate part is that the CNAs were hired BEFORE my mom was terminal, and the hospice program says that they can't tell them what to do, but can only instruct the family, because the CNAs are not their employees. I explicitly instructed the CNAs to give the morphine, and my 2 brothers promise to help watch things (they live in her town).

My DSis and I did fly home- we both live on the other side of the country. After talking with the doctor, he really felt we were making her hang on, and advised us to say our goodbyes while she still could realize we were there, and then go. It was one of the hardest things I ever did- next to telling Dad goodbye. But, there was a peacefulness in mom's eyes, and she was okay. My DD17 got accepted into college with a great scholarship and received the letter yesterday, and that seemed to bring a big smile to mom's face.

Now comes the waiting- and back to work. I know about FMLA, and yes, my university has it. BUT, we have a new provost, some new policies, and they are looking for excuses to house clean. We were told at last week's faculty meeting that tenured faculty could be fired for "poor collegiality"- whatever that means! I just don't want to be the test case!

I feel okay about leaving- my brothers are there, and will keep an eye on things. I still think we should be giving more morphine, but they PROMISED they would hound the CNAs. Breathing is irregular, and the CNAs report she is "drinking the ensure", or at least 8 ounces/day. I think they actually throw most of it away. She was also having some pauses in her breathing, and more hallucinations-she was calling out to my dad and her parents last night. The time is near.....and it breaks my heart. OTH, she is no longer able to use this body, and it is time to move on. I told her that going to heaven was like the first overseas trip she took- you didn't know what to expect when you got on the plane, and you were a little apprehensive about the journey. But, once you got there, you had a blast and met really nice people. I also really believe that my dad will come to take her- he was always there for her, and I believe he will walk her home.

Again, thanks for all the good thoughts and advice. I will keep you posted when I can. It is a sad time, but we can be joyous knowing what adventures she is waiting to begin.

:grouphug::grouphug::grouphug:

From your posts it sounds like the CNAs were hired by your family to care for your mom - thus making it hard for the hospice to tell them what to do.

That being said - since the end is near the hospice can and should provide you with daily RN/LVN visits to help administer the meds. Hospice is not like other medical fields. If your mother needs morphine she should be able to get it that day - no delay. The hospice is there to provide care realted to the terminal diagnosis.

Also you are entitled to continuous care. This is eight or more hours of continuous staffing, hospice employees, in a 24 hour period. At least four of these hours must be completed by a RN/LVN. This may help with your delimena with the CNAs.

In addition there is respite care. This is aimed at relieving the primary care giver for several days.

I just hate it where I hear of hospice companies being lazy or cheap. All of these things are so easy to accomplish and should be put into place to ensure that the people like you and your mom feel more supported during this awful time.

ON a personal note, the hospice I had with my mother gave me the medicine to give to her when they could not be there. It really helped my mother in her last few days. It was hard but it was better to see her pain free and resting comfortably (as much as possible) then to see her moaning in pain.
 
it took about 2-3 weeks for my stepfather's mom to pass, once she made a turn for the worst. i think hospice came in about a week and a half before she actually died.

i know in our case, my aunt (who had been her primary caregiver since she had a stroke about 20 years ago) was the one administering medication. She had issues giving the morphine at times, as Babs was still having some lucid hours, and my aunt didn't want to take that away. My mother and i did NOT agree with this....we were pretty :eek: but it really wasn't our place to say anything.
 
I couldn't quote DisneyDoll's questions in order to answer them, but I'll try to address them this way...........

Yes, a DNR was in place and yes, we had gone over it with the medical staff on more than one occasion. Why they would resuscitate a woman her age in her barely alive state who was coding is beyond me, let alone for over 25+ minutes with a DNR in place. But by the time they bothered to come to the waiting room and tell us what had happened, the deed (and damage) was done. Before that incident, her outlook had been grim, so dying that night would have been a blessing. This was a woman whose goal it was to die in her sleep, quickly and without it being drawn out. Go to sleep after a nice meal and a movie, and just never wake up....... Avoid hospitals at all costs. She got the exact opposite ending she had wanted.

The bully brother has always played that role with the other two younger brothers. They are nonconfrontational and usually give in to shut him up, because trust me, he will NOT stop until he wins. They assumed these roles decades ago, and habits are hard to break. The problem is, MY family does not tolerate bullies and we cannot bring ourselves to give in to them. So.....A confrontation is inevitable between the bully brother-in-law and me when the issue is as important as this was. And it got testy, to put it mildly. He's not used to being challenged.

After my MIL died, the other BIL and I did have a laugh about the day bully BIL and I had it out. Nice BIL said of the showdown, "At that point I said to myself.......And now, she is going to snap his neck." :lmao: And nice BIL didn't sound as if that would have bothered him a bit. :rotfl2:

For many reasons, I am done with bully BIL. He is rude, condescending and arrogant on his best day. I think he used his mother's last illness to play Number One Son and not to be her advocate. Dying people deserve better. His lack of compassion sickened me. He treated his brothers, who HAD taken care of their mother for decades, like secondary players. He took advantage of the fact that they were exhausted from a solid year of intense caretaking, consisting of one crisis after another, and he wore them down. I don't have to be remotely polite to him now that his mother is dead.

I told DH that if BIL is on his deathbed someday, we need to remember that according to him, the absolute minimum of pain medication is "sufficient" and go with that dose. Perhaps a Tylenol every 12 hours. :rolleyes1 I thank God every day that when my mother was dying and my sister and I were in charge of her care, we agreed on things and kept our mother's wellbeing as our primary and only concern.

In our case, my mother wanted one of us with her, I believe. After reading all the posts, and realizing that the OP's mom was a career woman before that was the norm, I started wondering if maybe she of all mothers, is supremely aware of today's job market and worries that too much time off might put her DD's job at risk. (The OP said that just might be the case.) You know how many mothers worry about their children more than they worry about themselves....... Maybe she is being supremely practical and is thinking of her DD's future and that's one reason she doesn't want her to stay around on what my DH termed the "deathwatch" (no offense intended) during his mother's last few weeks. It's just a thought. If that IS the case, then the DD hanging around might actually cause the mother anxiety. All the OP can do is take her mother at her word. And NOT feel guilty afterward.
 
I'm so sorry that you and your family are going through this.:hug:


My dad was in a Rehab/Nursing Home, during his last few days of life, and they gave him morphine around the clock...and I think it did make him very sleepy, and relieved most of any pain that he had. He took in his last bit of fluid (by mouth) on a Saturday evening, and after that point in time, never took anything in, solid or fluid, and he passed away about 72 hours later. He was not on iv's, or attached to any kind of medical device. But the nurse said that even without fluids, a person can live several days, but beyond that, they cannot.

It sounds like you have already said your good-byes, and now you are back home. Don't beat yourself-up because you cannot be by her side. You are doing the best that you can, and I bet she knows that. I hope that when it's her time, she will go peacefully.:hug:
 

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