I have a sibling who is helpful now. But not proactive. This is going to be a somewhat graphic post.

Most facilities despite price don't go check your LOVED ONE often enough to see if they are in pain. They just don't. Put pain meds on the clock and prn.

Why are they in pain? When bedbound and can't reposition self they are frozen. It is painful.

When they develop decibutus ominous, chronicled in 1800s by charcout, renamed Kennedy Terminal, ulcer, they are in pain. They can't articulate pain at this stage.

Our mom has developed the doll or shark eye, glassy, tearing. Also cheyne stokes breathing.

Hospice RN called me this morning to tell me, she changed our mom's diet to pureed, because the breakfast she ate, as sparse as it was, still in her mouth. Now think about that. Long and hard. Think about it.

Hospice is a godsend. The facility would not have told us this because they are not hospice. With hospice, your loved one will get more services, more eyes, more caring, more treatment.

Most importantly. Your loved one will not be in distress. And isn't that what we want?

Medicare part A pays for it.

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Segoline, I am so sorry for your loss, I just read about your losing your Mom on another thread.

By now you are extremely tired after sitting vigil these past couple of weeks and especially the past couple of days, and now you are busy making arrangements for your Mom's funeral. My suggestion to you is to make those immediate decisions necessary, and then take the rest of the day to rest up and reflect on your loss.

I know that when my Dad passed away just after midnight, my 5 brothers and sisters barely slept and we all met up 1st thing the next morning and jumped right into funeral planning without a moment's rest, it was all too too much, butter some reason felted had to have things all buttoned up and services within 3 days time, which is so not true.

Fast forward 14 months when our Mom passed (early in the morning, thank God) and we collectively decided that we would take that day to rest and get our heads on straight before then getting to work on her funeral arrangements and boy did it make all the difference in making better choices at the funeral parlor, and just Everything. Of course we had the knowledge of having done this before, which helped as well.

I pray your Mom's last hours were calm and peaceful, and that you were able to share in your sadness with family nearby. Take care in the coming days as your grief will come in waves, as you busy yourself with the final preparations. Again, I am so sorry! Hugs!
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Reply to staceyb

So I got a call a little while ago. They have started the morphine valium cocktail for our mom. Despite oxygen, her respiration and BP values have declined.

For the last 2 days, the urgent care team of this hospice been seeing our mom 3x per day with telephone updates. All RNs. They are so very kind. Answer all questions. I think I mentioned previously that a chaplain was called yesterday, and he called me from her room.

I talked to my cousin who came last week and was here for mom's rally. She saw my dad, who has been dead for 40 plus years, as a young man, carrying a baby. Their son they in infancy. They came as escorts. This has been reported too often to be b.s.
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Reply to Segoline

You express so well why hospice is a godsend. We are all headed this way. We are all going here. And we deserve to have our pain relieved to the extent it can be relieved. What would we each want for ourselves at the end of life? I see so many on these threads not seeking hospice early enough, and I fault the elders' doctors as much as family. The stats on hospice are that people die very soon after admission. That is not what it was designed for. It was designed to give people relief in the last 6 months of life from pain, and the huge amount of emotional support for family that it gives. I hope more will become educated about both palliative care and hospice.
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Reply to AlvaDeer

I have been an advocate for Hospice for years.
I have said previously I could not have done what I did for my Husband without the help I got from Hospice.
Unfortunately not enough people take advantage of this wonderful service.
Far too many only spend days, weeks at the most on Hospice when far more could be done if Hospice had been called sooner.
My Husband was on Hospice for almost 3 years. during that time we/I got:
Weekly visits from the Nurse
Twice then 3 times a week visits from the CNA
Visits from the Social Worker, Chaplain, if we wanted a visit.
I took advantage several times of a volunteer that would come in and stay with him so I could go to a night time appointment.
Medical equipment
Medications delivered weekly
Emotional support
My Husband got personal care,
He was monitored for pressure sores, eating, drinking, pain
I could go on and on...

I encourage anyone that has a family member that has a Life Limiting Illness and they are no longer seeking treatment PLEASE call Hospice.
There are two types.
For Profit
Not for Profit.
The one we/I chose was a Not for Profit. I do believe that made a difference.
Interview Hospice just like you would any medical choice.
You can change your mind. If you later feel that Hospice in not the right choice or you do not like the one you selected you can revoke Hospice or you can find another that is more to your liking.
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Reply to BarbBrooklyn

Thank you for sharing all of this.  It took me by surprise with my aunt.  She was sitting up having coffee on a couch with me in the NH one day, and I got a call 2 days later that she has pneumonia, and how aggressively do I want her treated (eg, going into ER, etc.)  Dr. whom I trust later said antibiotics not working, suggested palliative care, as she was not communicating, eating or drinking. I can't recall which day or in what order, but when I arrived, she was on oxygen, morphine, and having her position changed frequently.  I asked about hospice, but told it was too late for them to accept her.  Luckily this NH was excellent with their palliative care.

Segoline - Prayers for all of you, and big (((HUGS)))
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Reply to GrannieAnnie

I would like expound on a previous reply. I have posted here about my battles WITH my sibling. Two generations have duked it out verbally an route to see our mom. We have had to pull over on the highway. Old scores settled. Old wounds out and handled.

And it was her impending demise which brought us full circle. Her last gift to us. Thanks mom.
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Reply to Segoline
Shane1124 Jun 2, 2019
What a lovely tribute to her and what’s better is all of you are together now. Hugs to you, Sego.
((((((hugs)))) sego
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Reply to golden23

Seg, Yes to Everything you said, Hospice is a Godsend!

Prating your Mom is resting comfortablyand eases into the afterlife in her sleep very soon. I know how hard this has been on you. Nobody deserves to be in pain at the end of their lives, you are doing the right thing. Hugs!
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Reply to staceyb
Segoline Jun 1, 2019
Today was a very rough day. Our mom in just a few days us now pretty much comatose. Unresponsive to voice or touch. Unrousable. Oxygen started today. Morphine on hand but not yet started. Chaplain came and called me from her room. This is a hospice service as is oxygen. And morphine.

Three generations came to see her today. Each spent time alone telling her whatever. Mine was thanks for the opportunities, experiences, education she provided. I told her she did a good job with us. We would be ok. It is ok for her to let go.

Some of the visual images at end of life, are very difficult to absorb.i won't mince words. They are awful.

Her great grand daughter who is 5, and has come with us many times, and this little kid is a trooper. Helps adjust pillows. Her mom is an RN who is fine with this stage. It is part of life, yet the end of it. Circle of life.

I actually have a pretty amazing family.

We have 24 hours to a week.
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Yes yes yes! Hospice can be the ultimate patient advocate. They have no interest in any part of the hospital/nursing home politics. Their goal is to help the person and her or to his loved ones move comfortably through the process of an ending life, so please reach out to your hospice helpers with any needs you and your sister may have—they have social workers, Chaplin’s, bath aides, and Nurses and even some therapists to help you and your family and friends throughout this journey. A good nursing home will welcome the hospice members and include them in your loved one’s team of care givers.
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Reply to Labney

OMG. Call just came in, my FIL has just passed away :(
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Reply to worriedinCali
smeshque May 29, 2019
So sorry worried. Big hug and prayers for you and your family.
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This is my greatest fear. For my mother, as well as for myself. I wouldn't want it for her because I wouldn't want it for myself. I am so sorry you are going through this. Sending out hugs and prayers for you both. Stay strong and know that we care
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Reply to anonymous840695
worriedinCali May 30, 2019
Thank you salutem. I sincerely hope neither your or mother have to go through this.
On a lighthearted note, I just know my MIL is up there on her beautiful sparkly cloud cursing her ex husband & giving him her infamous stink eye! Impeccable timing for all of this. Really. They had a very Tumultuous marriage and she was very bitter towards him until she died. A lot of anger and resentment. I chuckle to myself thinking how angry she must be that he’s dying now....right around the same time she did! No she definitely would not have wanted him dying the same month she did. Not at all. She wouldn’t want to share it with him!
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Reply to worriedinCali

Seg, is your mother in a nursing home? For some reason I thought she was still home.

I’m glad you brought up “the other side” to hospice. My FIL’s in a nursing home, on hospice. Thanks to poor communication, I know that he’s “doped up” but I don’t know why. I can only assume it’s for pain, for a few years he’s been in bad pain and his doctors could never figure out what was causing it. They said his cancer wasn’t the cause. But I am sure it is causing pain now that treatment has been stopped. For the last 3-ish weeks when we visited him, he’s been doped up. Sleeping, not really able to communicate.

He has a feeding tube. I am confused about that because he got the tube 5 months ago yet he is still served solid food. I saw him eat a big meal shortly before he entered the nursing home in late April. Anyway. The reason for the feeding tube is because he has a rare condition that has taken away his ability to swallow and speak.

So twice in the last 5 days he has pulled out of the feeding tube! And now there’s a disagreement over whether or not to remove it because sibling #1 says it’s life support and he specifically said he wanted a DNR and did not want to be kept alive. That sibling thinks it should be removed. They think he pulled it out because he knows it’s keeping him alive. Sibling 2 thinks he pulled it out intentionally and that’s their only input. Sibling 3 who is the POA thinks he did it accidentally. That sibling said that FIL said he did not want to starve to death. Sibling 1 says that when he said that, he meant he didn’t want to starve to death because he couldn’t eat, while fully alert. And that he would not want to live like this. Sibling 3 brought up taking him off the meds for a day so that they can ask him what he wants to do. Sibling 2 said he saw him the other day before he had been given any morphine and that he was still unable to communicate. That was the extent of the communication.

It sounds like POA will ask hospice to stop all meds for 24 hours. I am worried he will be in excruciating pain! I know he won’t be able to communicate, even if he can get the words out, he’s declined cognitively. A few weeks ago we walked in and he was pulling at all his cords looking for something and he said he was looking for the air! We thought he was looking for the oxygen tube. It took some time but the CNA was able to figure out he was looking for the TV remotely don’t envy the POA at all. I tend to agree with him about stopping meds and asking him because morally it is the right thing to do BUT I have a real problem letting him be in pain! So it is my hope that POS singling will spend the whole day there and monitor him & get him back on morphine if he’s clearly in pain. Even before he was doped up, my husband noted that his mind was slipping. I truly don’t believe that, if they discontinue the meds and ask him if he wants to keep the feeding tube, that he will be able to fully comprehend what is being asked and why his kids are asking it.

Might add we are dealing with this on the eve of the 1 year anniversary of MILs passing!

I don’t wish this on anyone.
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Reply to worriedinCali

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