hospice nurses--personal beliefs in life after death

mackie0601 · Mar 21, 2009

PinkDolphin:

I am glad you happened upon this site. There is a great deal of wisdom here in the words of advice from experienced end of life "professionals".

However, I must say: To all those that implied I violated patient confientiality, or HIPPA.....Or made D's story into something sensational -stop -let's get one thing straight- first up- D's family actually wrote (individual) letters to me, my coworkers, the local paper and the NPHCO regarding D's care. They wrote to me... and guess what?????....D's father is a physician in VA!!!!

He heard the story about his son's death from the HHA.

That angel (i.e.HHA)[ whom most RNs believe is just a butt washer] more than anyone, saw what D went through.

How many nurses have no concept of what the aides do????I would say 99%,

BUT, IN HOME CARE, THE ONES THAT SHARE THE MOST INTIMATE EXPERIENCES WITH PATIENTS ARE THE HHAs. Can you imagine someone else washing your bottem???WIPING YOUR BEHIND???THERE IN ItSELF LEADS US TO THE ULTIMATE EXPERINCE OF COMPASSION

WOULD YOU CLEAN SOME ONE FOR $5.55/HR-$7.85 AN HR????

But, if you are good to them---they have your back and your ass...

Many times the HHAs and CNA's have guided me in the right direction, because I was new, and inexperienced, But, I was kind and compassinate. And I had/have respect for the CNAs/HHAs.

you all should

allnurses Guide · Mar 21, 2009

Hi All-
I just wanted to thank everyone who has shared these very personal stories. I am an outsider but am currently the caretaker for my father who is dying of cancer. I have to tell you I found this site totally by accident, but it has helped me beyond words. Leslie, I have read and reread the post "managing symptoms for a good death" and the insight you and Michael have is overwelming! My dad has been on hospice for a couple months, and is doing well for now. I just want to let you know that you have given me such comfort with your words.
THANK YOU!

Hi - I'm also a hospice nurse and appreciate being allowed to join with family and friends when a loved one dies.

One of the books that helped me understand more about dying was "Final Gifts", written by two hospice nurses who explained what they call "nearing death awareness". I encourage you to get a copy and read it - most hospice offices have a copy or two. http://www.growthhouse.org/books/r_call1.htm

I wish you strength and your dad a peaceful passing into the next life. I myself am a Christian and do believe in heaven.

steph

pinkdolphin · Mar 21, 2009

Hi Steph- I have read Final Gifts and everything else I can get my hands on!

allnurses Guide · Mar 21, 2009

Hi Steph- I have read Final Gifts and everything else I can get my hands on!

That is great! I am a fairly new hospice nurse - a year actually. I went to a conference last Fall where Ira Byock spoke and I got his book "The Four Things That Matter Most". He is very nice - personable and tells great stories.

steph

pinkdolphin · Mar 21, 2009

Hey if you have not read the thread on this site titled "managing symptome for a good death" take a look at it, make sure you get past the first few pages. It is amazing.

Loving Son · Jul 26, 2009

i am just coming back to this forum after a long break; i've been doing hospice nursing for two years and loving the field of palliative nursing for longer than that.

i have to say that i completely agree with the above posts; the passing of each and every patient is so special, so sacred and so incredible that you can't properly articulate with the rest of the world in order to give it's proper honor.

some times i am so overcome with grief that i can't even speak about the death so i write about them; i eventually will have enough that i will publish a book. while i've been in graduate school, a fellow student in florida has asked if i would co-author with him. i'm actually considering it.

what a privilege and honor we have each day as we serve this population of patient and family; there are days when i want to shriek with frustration and pull my hair out but most of the time, i wouldn't trade it for anything.

thanks for such a great thread - i too understand the need to talk but also to keep private.

hello everyone,

i picked this particular post to raise the subject from a different perspective. i am not a nurse. i discovered this forum only yesterday and have learned many things since reading a few of the topics.

before going into some detail, i just want to say thanks. i have developed a tremendous amount of respect as well as affection for the many nurses that i have come into contact with over these past few months in dealing with my mom. a few of them i would love to take home with me, but that is another subject for another day.

my mom is in hospice care at a nursing home which is considered one of the best in the country. the staff at the home is supplemented by the hospice care from the insurance company. what is frustrating for me is that i feel so helpless and feel like a bystander at times even though just being there helps my mom and she appreciates it.

my mom is 87 and has diabetic neuropathy. she had one leg removed and that was only after an angio plasty (i think that is what you call it) didn't work, and then a part of a toe that was infected removed and that didn't work and then the removal of the one leg below the knee. none of the doctors expected her to survive the surgery, but she did.

she was in the hospital for about a month getting to the point where she could be stabilized, first through intensive care, then intensive care light which they called acute care, and then when she was released went to a nursing home for long term care.

that was several months ago and then shortly afterwards what happened with the first leg started to happen again with the second leg leading to a decision not to have another surgery. she elected to go on hospice care and treat the leg as wound care and with pain management.

when she first started hospice care, i had a long conversation with the nurse practitioner and was told that in some cases people can live with a dry wound for a few years and that there is no way to predict what would happen or when.

the nurse practitioner says my mom is like a rock and is amazed that she is still here.

she is now approaching her 5th month of hospice care and until these past few weeks was relatively speaking o.k.; as chipper as she could be, smiling, enjoying to the extent that she could whatever quality of life she has, able to see friends and family,etc.

a few weeks ago, she started to get weaker, less perky, which coincided with more pain and the wound going from dry to wet.

there have been days that i feel she will be here for a long time and other days when i feel like this will be her last. it's a real yo yo.

i discovered this forum as a result of a search request trying to get some insights into what to expect or get a feel for in terms of time, and what happens next and how to possibly deal with it. it is very painful for me to watch her go downhill fast and not knowing if when i say good by that will be the last time at least in this life i will see her.

she is a person of great faith and is comfortable knowing that she will be going to heaven. i told her it is ok to go, that we love her, we will miss her and when our time comes we will see her again. however, that doesn't make it any easier.

today when i saw her twice, once at lunch and again at dinner time, she really didn't eat much, was sleepy most of the day, and from the morning till the evening had already been given four vicodin, plus was just put on a pain patch a few days ago which is the synthetic morphine. yet when i left early in the evening, she was grimacing in pain but sleeping. i asked the charge nurse to keep an extra eye on her and she assured me she would. i called a few hours later, and was told that she was able to sleep, and had just woken up but didn't want to eat anything.

so if anybody wishes to comment, i would love to read your response as to your point of view on the perspective of what actually happens when it is her time to go and given what i described if we are talking about a few months or more. i think that years would be optimistic as the nurse practitioner said.

thank you for taking the time to read this and if you choose to do so to respond.

lantanaRN · Jul 26, 2009

Dear Son: My heart goes out to you in this very difficult time. Your mom is beginning to show signs of shuuting down, which is usually the norm in a life limiting disease. However, your mother has also bounced back many times before so there is alsways HOPE. That being said, briefly what may happen is that she will continue to be very sleepy most of the time and her appetite will essentially vanish. All of which is normal in the dying process. You mentiona a new pain patch, which may be partly causing the sleeping..once her brain adjusts to the Fentanyl (which is similar to but stronger than morphine.) she may become more alert and functioning. Ideally her pain is managed..as gangrene can be quite painful. If she is comfortable than the rest of the process should follow a pretty predictable path. Your hospice nurse will be monitoring the effectiveness of her pain control, and ideally will adjust as needed to keep your mother pain free. God Bless you in your journey.

tencat · Jul 26, 2009

Son, bless you. You are going through a very difficult time. I know you want to know the time frame ie: how much time does she have left? No one can accurately answer that question for you. It depends on so many factors, and it usually comes down to she'll go when it's her time to go.....It does sound like she's starting to slow down, wind down a bit. It's often a gradual process and everyone is totally different, but in general....urine output goes down, bowels quit working, heart rate elevates, blood pressure drops, body temperature fluctuates. I've read, but don't know the sources (sorry) that as the body moves toward death a person loses the desire/need to eat or drink, and the brain releases its own chemicals to soothe and give the person a sense of well-being.

leslie :-D · Jul 26, 2009

(((son))) - watching/waiting for your mom to pass, will undoubtedly be the most trying part of this journey.

what the others have mentioned is true, however, if her pain is not properly managed, she may not exhibit the characteristic signs of impending death.

she should not be grimacing, and it is imperative her pain is properly attended to.

only then, can one can give an assessment of where she is in her process of dying.

once her pain is controlled, you will typically see the increased sleep, disinterest in food, which can continue for weeks, even months.

sometimes she may appear disoriented when she awakens from sleep.

she may appear confused, or say something 'off the wall'.

it is my belief that as we shut down, we are betw 2 worlds - inbetween the here and there.

when her time is almost here, there is a good chance she will be meeting/seeing loved ones who have already passed.

if this happens, i encourage you to embrace it and her, for it is very comforting for the pt to experience this.

if able, it is also important to smile when she shares such events w/you, and tell her "that is wonderful, mom".

i am getting ahead of myself, and for that, i am sorry.

right now, focus on getting her pain properly managed.

after that, the rest should fall into place.

we are here for you.

please keep us updated.

wishing you peace, faith and enlightment.

leslie