How did you know the end was approaching in hospice?

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My mom, who has lived with me for six months, entered hospice very suddenly two weeks ago after years of weight loss, stasis ulcers, and more recently auto-immune blood problems and repeat blood transfusions. She was diagnosed as having colon cancer even though her tumors were recently biopsied and labeled benign because she is not a surgery candidate and the doctors said that her tumors likely are malignant or will become so. Her decline has been swift. She spent a weekend in the in-patient hospice facility and we were both thrown by how out of it she was on the increased pain medication. She wasn’t eating or drinking or using the bathroom, and she was having dreams and visions. I thought she was ready to pass, but then with slightly reduced pain medication, she rebounded and was cognizant, eating, even occasionally saying she was comfortable. Now, a week later, she was in excruciating pain that oxycodone and morphine at home could not control, and she has been re-admitted to the in-patient unit temporarily. I feel so jerked around by the experience. Caring for her at home since she entered hospice is a huge challenge because she can barely get up and is always in massive pain, but she won’t go to the bathroom in a pull-up, so I’ve been helping her to the bedside commode. But when she is in-patient, she is simply knocked out by the potency of the medication. I guess my question is: is this what hospice is? Should I expect her to just spend her remaining time completely passed out? And if you have experienced this, did you have any indication that the end was near? Today, I have prayed several times that she could simply go and be relieved of the pain, but even still, I wonder if it’s just a pain episode and she will be back home again soon (the in-patient facility is very quick to release). I’d love to hear other experiences. I know I can only take one day at a time, but I am a planner, and this experience is making me feel insane.

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I've had 2 relatives pass away in Hospice from cancer. My mom had pancreatic cancer and the last couple of weeks did not eat or talk, She was on pain medication but not morphine ( the doctor had given me a prescription to use when needed, but the nurses felt like the other medication was enough. The nurse with her the final night said she did not see any changes in breathing or body fluids that would signal death was near.
My brother had bone cancer and was in a Hospice Facility for the last 2 weeks. He ate well every day and was very talkative, We worked on his computer together and got all the passwords, bills, etc. taken care of thank goodness. About 3 days before he died, he started having trouble breathing (oxygen) and was be given pain medicine and morphine on a regular basis. But he never lost touch with reality. The last day I was called about an hour before he passed and told that he had suddenly taken a turn for the worse. It happened really quickly.
Being with both of them the last few days made me realize how different it is for everyone. I kept waiting for him to stop eating and sleep more. It never happened.
I am thankful for Hospice nurses and doctors who were so good to take care of both of them since I was not there.
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I am sad today my Mom passed on August 6, 2018. she was in Hospice at home a six month period. Mom lived with me until she transitioned at 7.01 Pm that Monday. I never placed her in a facility. At times it was challenging. however I charged on.

Mom was diagnosed with heart and Dementia about a year. She was 94 and a half. I was her primary caregiver Hospice was limited, visiting nurse every two weeks to check her vital signs. A home care helped in a bath/ mostly bed bath Three times per week I did her baths the other days. I managed her meds at all times refills came from her Doctor and Pharmacy. Pain management was some morphine and an anxiety medication. Mom was in continent so no need to take her to the bathroom, I changed her diapers frequently, turned her to prevent bed sores.
I learned to be kind and patient with her. She sometimes was in a different place. Talked about her past and she sometimes did not recognize me. I went along with whatever that day had to offer.
She was comfortable. Four days prior to transitioning I observed a change and it was really quick.
the day before her breathing was different than any other time put her on oxygen ( we had at home) called Hospice that night to check Mom. The Nurse Checked her vitals and her oxygen level was not normal kept her on oxygen.
I observed the Nurse’s demeanor. I never left her side from the Sunday night until she passed. Which was very peaceful. Thank God.

It was a gratifying experience for me to have cared for My Mother,and was fortunate to have had the opportunity to hug her many times and told her how much I loved her. Although she could not talk she squeezed my hand and puckered her lips.
I truly loved her.
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Reply to zoemiller
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I'm confused by your description of her cancer/noncancerous tumors. Is she dying of cancer that has metastasized? If that is the case, it want my loved one knocked out and not feeling pain.

Is it possible to get your mom admitted to a Nursing Home so she has round the clock medical care?
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jessully Sep 1, 2018
Thank you for your answer, Barb. I was confused, too. Unfortunately, her diagnosis and prognosis were never clear, but she passed away the night I wrote this, so I guess we both knew what was coming.
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This is a very tough place to be as there are no easy answers, if she is in pain she needs enough medication to control it although I suppose you could ask that it is reduced somewhat to see if she regains consciousness. Remember though that Hospice is about end of life care and she was frail and failing even before the biopsy, I think you need to balance the decision to keep fighting death against the quality of the life she has and an evaluation of how much time you can realistically hope to gain.
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jessully Sep 1, 2018
Thank you for your answer. She passed away that night.
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When HomeHospice finally accepted my DH, he was already in the process of passing. He became bedridden the same day and passed 3 days later.

You need to release your Mother - tell her gently that you understand her time is coming and it is ok that she will have to leave you. Praying is good, but telling her that it's ok to leave is better. If your Mother gets better, that's ok too.

I had to release my DH because he didn't want to leave me - but he wasn't living anymore. Towards the end, they will refuse food and only sip at liquids. They can hold your hand but have trouble speaking to you. They can still hear. Hospice has a book that tells some of what you can expect at the end. Ask about it. It helps to understand. Your mother will slip into a coma at the end but that can last 24 hours - I believe the time varies. Some people equate that with the person "lingering" for not wanting to leave you.
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Catgetsdown Sep 2, 2018
I agree RayLin. When it became clear that my mom wasn’t going to recover to her previous state- which wasn’t great but at least mentally better and able to get around w help- after reading notes posted here, I told her that everyone was fine, we will be able to take good care of her disabled granddaughter, that me and my husband are happy and don’t need anything, we’re just fine. That I would take good care of her cats etc. That seemed to make her passing easier. She didn’t seem to be clinging on as frantically and relaxed more into her situation. I got a call from the hospice nurse that she was not expected to live another day and I packed my stuff and went over to be with her. I held her hand and spoke to her about all her loved ones and family as she took her last labored breaths. Sometimes, they are holding on because something is left undone or unsaid. Reassure her, say what you know she need to hear. It will help her on the journey. Take care,
Suzanne
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I am so glad you posted this and I am seeing it this morning. My mother is going through something very similar and I have the strong gut feeling it is the end of her decline, also.

My mother has a chronic infection in her hip that they cannot get rid of due to cirrhosis of the liver and other issues. Her pain has been off the charts for over a year and hospice is at the point they cannot due anything else. She is on 100mc Fentanyl and 10mg OxyContin and these are not doing anything. A few weeks ago, they tried adding methadone to help with her bone-on- bone arthritis pain, but that knocked her for a loop and we had to stop it. This week, they tried morphine, but Mom said it did not do anything and it knocked her for a loop again. After both of these attempts, her pain seemed to get worse.

She will eat small meals and drink some water, but is extremely confused, even more so than a month ago. She also can barely get up to the toilet. She sleeps constantly unless someone is there to wake her.

Like you, I pray daily that her pain will be taken away. I don’t want to lose her, but it is horrible to know the pain she is in and know she knows there is no help for it.

Please know now that your mother is still with you. I have seen evidence of this since my father died years ago. She is now out of pain and in peace. My thoughts and prayers are with you. Thank you, also, for your post.
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wi57twin Sep 2, 2018
The last 12 days hospice did a lot of pain med changed and ended up on dilaudad the last few days.
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Jesully I am so sorry for your loss. The final days on Hospice are so difficult. He is No longer in pain, and is at peace now! You be sure to take care of yourself during this busy time and remember that there is no rush, the pressures are off, and funeral arrangements can wait a day or two.

We had my FIL in our home on Hospice care for the final 9 weeks of his life, and also the prior 13 years as well, but during the Hospice time, to see the steady yet gradual decline was so very sad. He was bedbound the entire time, he had Lung Cancer and was so frail and weak from the prior Pneumonia, that even together, my husband and I could not lift him.

Our Hospice Team was wonderful, provided everything we needed, and we took advantage of all that they could offer us, including liquid nutrition shakes, musical therapy, bath aides, Chaplain services, massage therapy, his pain meds and of course all of the medical suppkies and equipment too.

Our 4 kids, spouses and Grandies were here frequently to see him, as well as my 3 sisters, and that was about as much physical interaction as he could manage. His other 2 kids failed to even visit, call or even send a card, so that part was very disappointing, but nothing less than I had expected of them, such selfish people.

The roughest part was trying to distinguish what was actual pain, or what was bothering him, as he was a poor communicator. In the end his agitation was what bothered him (and us) the most, as he did not understand just what was happening to him, so finding the exact combination of medication that Worked best was trial and error.

On his final day, I was quite unprepared, as I did not think the end was as imminent as it was. He developed a sudden and very high fever that morning, and while I was on the phone to Hospice, in that minute I stepped out of the room, he passed away. I kept hospice on the phone with me as I pronounced him dead, I was so scared!

Our Nurse arrived shortly, and took care of all of the necessary arrangements, and then he was gone from our lives, after so many years of him a part of our household, the transition felt unreal for several days.

It is strange that all of our stories are so different, yet so simular.

We have now lost all 4 of our parents and now We are the Elders, and that is kind of strange to wrap our heads around as well! All 4 of our parents had difficult end of Life journeys, but I am glad to say that I did my best to help them all, til the end.
God Bless all Caregivers!
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Do you know which of her problems is causing the pain? Have you and she discussed her end of life wishes? If I had pain caused by inoperable tumors, I would want to be sedated. Pain management would be the only goal.
I don't have a lot of experience with hospice but in my one experience no one could tell us when it would end. One family member stopped eating completely and took very little fluid (no Ensure. Just flavored water) and was alive for months. The night before she passed away, the hospice nurse said she saw no signs of impending death. So I think this is just something you can't plan. I'm sorry. It's really hard.
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jessully Sep 1, 2018
Thank you for your answer. I never found out for sure what the pain was from. She passed away that night. The difficult part was that she found out so late she had cancer that she never even believed it. She was in some denial and then just in excruciating pain. It was not pretty, but at least she was well medicated for the final hours.
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I’m confused by the conflicting statements about the tumors being cancerous and not cancerous too. I can tell you from my experience that hospice was like a roller coast ride. There times when my MIL was stable, eating well & breathing well and we were sure she would outlive the drs prediction. It was like she rebounded. But as the end got near, as we approached 3 months on hospice (and the dr said she had 3 lmonths left when he recommended hospice), she did decline fast. She went from eating small meals to take a bite or 2 (I think just to keep us happy), she stopped having bowel movements and she lost her breath frequently. If she’s dying of cancer then I don’t think she’s just having pain episodes. Cancer is very painful especially at the end. I am sorry you & your mom are going through this.
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jessully Sep 1, 2018
Roller coaster ride is so accurate. She passed away 3 hours after I wrote this.
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Hospice/ helpers/nurse have good idea when end is coming given illness. If you happen to be around as in like your own house they will ask do you want to be around for persons last moments. That’s a choice you have to decide. Then you’ll have to try to mental rebound and try to get your life in a condition to where you mentally and physically after.
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