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a poll about hospice/Update about my brother

tesslee's picture
tesslee
Posts: 97
Joined: Apr 2010

i am quite upset. my brother is in the hospital. hospice is involved. my brother does not want to die. hospice nurse told us she was going to speak to him and would be telling him he was dying. myself and 2 other sisters said no, do not tell him, he is afraid. she told him. now he refuses pain meds, he knows what was happening. basically they were euthanizing him. my sister is an RN. she knew what was happening.

anyway what i would like to know, is when you are near death, do you want an official to tell you this? i am curious how those of us battling cancer feel. i think i would know i was dying and would not need a nurse telling me so. i would not mind a representative of my faith as long as he did not speak of God was waiting for me. yes that is what the pastor said to him and i asked him not to.

this is latest news of my brother and i am very happy:

Dad home comfortable in his hospital bed. Hospice of Dayton following him at home- bedridden at this moment but he is alert/oriented and trying. He stood twice today for a moment. Doing IV feeds with PICC. Blood pressures are improving. I think he is glad to be out of the hospital.

tesslee's picture
tesslee
Posts: 97
Joined: Apr 2010

another hospice was called in.

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

personally, if I am in pain, and I do believe the end stage of cancer is painful, I would want pain meds and would not view it as euthanizing.
and yes, I would want to hear that this was it- that I am dying. I would hope I already had this conversation with family and those close to me, they are the ones who need to tell me and confirm it. Hearing it first from a nurse or even a doctor would not be my preference.
I am sorry your brother is going through this :( And equally sad that his family is also.

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tesslee's picture
tesslee
Posts: 97
Joined: Apr 2010

been given a drug to slow down his system, his water and feeds were turned off. he was declared dnr and comfort care. his blood pressure was 60. i don't understand everything but it was not regular pain meds which caused his system to start shutting down. once this drug was getting out of his system he became alert and enjoyed visiting with family. because of this he is refusing regular pain meds and they are feeding him and giving him water again. again i do not understand everything, but i do know he is afraid of dying.

this is a tough issue.

Lovekitties's picture
Lovekitties
Posts: 3346
Joined: Jan 2010

Did your brother sign a living will? I have no personal experience with Hospic but based on what you have said it sounds like it.

I also wonder if there are any 'conditions' for admission to hospic. I am sure that being terminal within a short period of time has to be one of them.

As with anything medical these days, family only has the power to influence treatment if it has been granted by the patient in writing.

tesslee's picture
tesslee
Posts: 97
Joined: Apr 2010

important info, the hospice nurse told him he was going to die that night (which was last night).

tesslee's picture
tesslee
Posts: 97
Joined: Apr 2010

what his family has signed or not signed. i do know they are very unhappy with this branch of hospice and have brought another in. he wants to go home to die and this hospice will come to the home to take care of him.

jararno's picture
jararno
Posts: 189
Joined: May 2010

Sorry about your brother. My mother was given "large doses of morphine" and very little fluids....(she had undiagnosed lymphomia and developed respiratory MRSA in the hospital )
I was not notified that she was semi-comatose and unfortunately she died while I was arriving in town to see her. My brother and sister were there and thought she was just sleeping alot. A nurse later told us that the morphine was increased to ease her suffering and it was kind of a legal way to end things. Kinda strange as this was at a Catholic hospital.

She did not have a DNR or any medical directives. No family was consulted, but in her case there was nothing that could be done due to her condition. An autopsy was performed at the request of the hospital as they were still unsure of her complete illness at the time.

Unfortunately families rarely agree final medical decisions. My brother wanted my mother to live no matter what. My sister and I knew it was time. My father was in a nursing home with dementia and never knew that mom died.

Wish there was an easy answer. I hope your family gets the peace of mind that you all need.

Take Care,

Barb

tesslee's picture
tesslee
Posts: 97
Joined: Apr 2010

about your mother. i agree there is no easy answer.

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

When I worked as a hospice volunteer, I had one patient who was very afraid of dying and refusing to "let go". He was literally fighting each day and had a lot of anger about his impending death. He was a patient that everyone said was "difficult" because of his anger issues. I actually found him to be a wonderful man and he ended up being my very favorite of all my patients. I literally loved the man as if he were my very own father. He had actually been my patient for over 8 months and had been on hopsice home care for over 18 months. Once we found a way for it to be ok for him, his journey became much lighter and he passed away peacefully as I held his hand and prayed the Lord's prayer with him (at his request).

What I found was that he didn't want to let go because he felt he was still responsible for his wife who suffered from Alzheimers and was in a care unit. Once I found this out, I had his sons visit with him and assure him that they would look after her. And I told him that perhaps his best way to look out for her was to be at heaven's door before her so that he could welcome her and help her when her time came. This was in keeping with his belief system and really helped him make his way.

Perhaps your brother has a reason that you can discover that might help him make his way at this time? A way to open the door for him? Just a thought that I wanted to share with you. I know how difficult this time is for everyone and you and your brother and whole family have my very best wishes. May you all have the strength you need at this time. HUGS

tesslee's picture
tesslee
Posts: 97
Joined: Apr 2010

thank you, your story made me cry. i think he is holding on because of his wife. they have been together since she was 16. but then that is an outsider opinion. and he is the nicest person you would ever meet. not an angry man at all. last night he was running his fingers thru my buzzed hair hair and telling me how pretty it was, i did the same to him. we both go to the same cancer center. he was very alert and engaged with everyone. probably more than 20 people in all.

tesslee's picture
tesslee
Posts: 97
Joined: Apr 2010

he was not that way when i arrived. he was breathing heavily and eyes closed. they even turned off the blood pressure monitor right in front of me cause they did not want the family to watch it go further down.

Love2Cats's picture
Love2Cats
Posts: 127
Joined: Dec 2010

My personal choice, is that I would want to be told, so that I could say "goodbye" to my loved ones.

AnneCan
Posts: 3692
Joined: Oct 2009

I am sorry you are dealing with such a difficult issue. At this point I honestly don't know if I want to be told "you are dying" when the time comes. Hope is what sees me through most days, + I would have a hard time losing that last sliver of it. I understand hospice is involved when a case is terminal, but know it isn't always iminent + in some cases people even leave hospice care. I think in many cases the patient knows when things are not looking good. I understand what Graci is saying about the workers being required to tell the patient.
again, I am so sorry.

tesslee's picture
tesslee
Posts: 97
Joined: Apr 2010

for understanding. not everyone is the same.

thxmiker's picture
thxmiker
Posts: 1282
Joined: Oct 2010

I have known a couple of friends whom were told they were going to pass shortly whom lived another year. To quote a cancer hospital ad, "We do not have expiration dates." One should live out their life how they choose. If they do not want pain meds because they want their mind clear, then so be it. If they do not want chemo, that is no longer working, it is a quality of life issue.

Our thoughts and prayers are with your brother.
Best Always, mike

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

Sorry to hear of your brother's situation, it can't be easy on any of you.

After 7 years of living with cancer, I am well aware that I will some day die, maybe from cancer and maybe not but everyone dies sooner or later. I think that I will know when the time is near and would not need someone to tell me that. If things took a turn for the worse and I found out I only had 2 weeks because of cancer, I would want to know. I also would certainly entertain hospice care and would take pain meds if needed. I do not see it as being euthanized at all, that is not how hospice (should) work. It's about making sure the person is comfortable, it's not Dr Kevorkian. Your sister, who is a RN, does she deal with hospice at all or is she just thinking they are euthanizing him?

I think it's very irresponsible of the pastor to say that to your brother especially since you asked him not to say that.
-phil

tesslee's picture
tesslee
Posts: 97
Joined: Apr 2010

my sister currently works as a dialysis nurse, previous 15 years on intensive care floor.

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

Except for surgery, we're staying home at nights, out of hospice and hospital. We have a private nurse that handled wife's mom for years after several strokes, through to the end, at home. I also had a parent with cancer, years ago, with terrific insurance but needed special "permission" for home care, who chose to stay home too.

We've used IV vitamin C heavily this past year for histamine and 5FU chemo toxicities. IVC worked well for post-surgical pain control, for us, as others reported. Our doctor signed off on IV C since the kidneys were ok and G6PD is not an issue.

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

If I were dying, I would want to know. I believe people probably do realize it, but I would like to hear it, just the same. I have a very kind, caring doctor, and I would want to hear the news from him.

I'm so sorry about the situation with your brother. I'll be praying for peace for all of you.

*hugs*
Gail

angelsbaby's picture
angelsbaby
Posts: 1171
Joined: May 2008

told angel he had a few months months but angel knew i think a week before that this was it

hospice nurses told me not angel the signs of death

michelle

tesslee's picture
tesslee
Posts: 97
Joined: Apr 2010

update to the condition of my brother is posted in the first post. thank you.

ktlcs's picture
ktlcs
Posts: 360
Joined: Jan 2010

That your brother is doing better and that he is at home. He sounds like a real fighter. when it came time for hospice for my husband all of the Drs assured me that the hospice workers would tell him what was happening. They were kind and wonderful people. Yet I chose to tell him myself. He took the news peacefully, asked for the morphine drip (he was in excrutiating pain) and passed in the hospital that same night, before we could aven move him to a facility. It sounds as if you had a bad experience with, not all hospice workers are the same, most are very caring of not only the patien but the family

I wish you and you family all the best.

Buzzard's picture
Buzzard
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Joined: Aug 2008

what a terrible situation to be in...I wish all the peace and calm and serenity in the universe for you and yours........Clift

AnneCan
Posts: 3692
Joined: Oct 2009

I am really happy your brother is home + is out of the situation. Thanks for the update.

tesslee's picture
tesslee
Posts: 97
Joined: Apr 2010

very much. this has been so hard.

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tesslee's picture
tesslee
Posts: 97
Joined: Apr 2010

i knew that already. that is why it did not hurt me. i would be very protective also of a chosen profession meant for love and compassion to help someone make their transition. i would only hope that no one go against my wishes if i am not ready. he's requested to see me today, so i'mm off. love to all.

tesslee's picture
tesslee
Posts: 97
Joined: Apr 2010

the drug narcon is what brought him back. thank god for that.

AnneCan
Posts: 3692
Joined: Oct 2009

Tesslee, how was your visit with your brother?

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

If the drug given to your brother was Narcan, the opiate reversal agent to stop the action of his pain medication, he most likely was dealing with pain med overuse/toxicity and the drug helped to bring him out of the effects. Please refer to the website link below. It was written by a hospice nurse who was the caregiver for her husband who died of colon cancer. She is well informed and really touches on issues that we all deal with but, this posting labeled "WHEN YOUR LOVED ONE IS NOT HIMSELF" is quite informative and might apply to what your brother experienced before given Narcan. The posting is about half way down the page. Here is the site: http://sheddinglightonthecancerjourney.wordpress.com/page/2/.

May I say that her blog should be required reading for anyone going through this cancer journey. I sent you to the 2nd page because it discusses the use of anti-anxiety and pain meds and how they effect the hospice experience. But, her whole blog is so full of good information and real human experience and I've found it a wonderful read.

I hope your visit with your brother went well for you both. HUGS

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tesslee's picture
tesslee
Posts: 97
Joined: Apr 2010

my visit was great. i was there 3+ hours. he talks, acts normal. he isn't walking yet. he did walk to the bathroom to go potty. his hospital bed is perfect. he was having a good time making it go uip and down, lol. his daughter (caregiver, respiratory therapist with children with tracheotomies(major mispell) would say Dad, don't go to far, remember your boxes of feed are under there. he likes to joke and makes you laugh. he loves hotrods and has been doing a lot of reading (about a special kind he plans on purchasing. so he has long term goals and does not plan on dying anytime soon.

Lori i went to that site, and what i understood was a massive amount off miscommunication between medical professionals. i am not sure of what happened in this case, but do know miscommunication was given as to his condition, causes, and why it was time for his transition. i really hate to relay this info as i am not the immediate family, but i will give my impression.

he was admitted because it was thought he had a dead bowel. abdominal pain. they opened him up and found it to be gas, closed him back. because he had a hard time bouncing back, sleeping a lot and such, the family was told it was his cancer, that he wasn't going to get better. then hospice enters the picture.

what he is looking at now is walking again, to recover from the surgery, and then time will tell. Lori, i've bookmarked that site and plan to spend more time reading it. than you all.

tesslee's picture
tesslee
Posts: 97
Joined: Apr 2010

instead of why it was time for his transition, that he was dying and in a lot of pain.

tesslee's picture
tesslee
Posts: 97
Joined: Apr 2010

i just found out i have pm's some very old, i didn't even know i had any.

AnneCan
Posts: 3692
Joined: Oct 2009

I am so glad you had such a great visit. It sounds like your brother is quite a character. I am glad he is doing so much better.

tesslee's picture
tesslee
Posts: 97
Joined: Apr 2010

yes he is. a lot like Kerry. he loves to tease his nurses. he embarrasses ( can't spell nor type anymore, pls forgive) his daughter, and makes his wife laugh. the nurses have great comebacks tho. i just wish i could be more like him in my journey.

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

Yes, lots of miscommunication. Both between the medical staff to staff and with the patients and caregivers. I've really found that to be the case while caregiving for my son. I consider myself fortunate having been an RN because I find that if you speak the language they talk to you differently and are more forthcoming wiht information. You have to know what to ask. And there is no place to go to found out what to ask. It seems like a vicious cycle sometimes.

I'm so glad that your brother is doing better. So many in hospice care really need to have their medications watched. It is easy to have them over medicated or under medicated and that is where the family can really help the staff. Each of us is different on how we handle medications and what works for one may not for another. Please be sure to have his caregivers note his reactions so that he can be as productive and active as possible and the docs can get him the right doses.

HUGS to you!

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amyb15's picture
amyb15
Posts: 109
Joined: Jun 2009

hi, my sister died on 1/27/2011. she did not believe that she was dying. when she couldn't get out of bed for an appt. we called her doc who said to call an ambulance. the ambulance guy asked me to ask her if she wanted to be kept alive no matter what in entailed, she gave a profound yes and acted very confused as to y they would be asking that. she was going to get a blood transfusion at hospital, but scans showed cancer was all over and most likely into the braun, she was put on the hospicce wing and died less than 2 days later . weather it was denial of what it seemed to work for her for almost 2 years, in the end i don't thonk it mattered. it was how she wanted it. i think she always knew there was a great chance she would die from the cancer, but never gave up hope. that is what worked for her

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