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My mom is 88 with stomach cancer. Rather than put her through radiation which she did not want, with the support of her primary and gastro, I signed her into hospice care in my home. For 6 months now it has been a good program and it has been no burden to prepare her meals, although recently her nausea prevented her from drinking much or eating barely anything.. However things changed this morning when, besides looking like she was ready to die, dehydrated and frail, she had a fall going to the bathroom, and although she has wasted away to under 100 pounds, my husband and I had a hard time getting her up. After we finally managed, we helped her take 3 steps and her leg gave way and she was back on the floor. Hospice told us to call 911, they came and took her to ER for tests. No broken hip thank God.
1. After a few hours of IV fluid in ER, she looked like she was alive again. Color to her face, red lips, and talkative. (I am starting to have an issue, with the deprivation of IV fluid in hospice care. I feel like not providing it is not palliative!)
2. I dont know how we can get her to the bathroom. She is very weak. How do you help someone off the wheelchair and onto toilet? I work and this is all so new to me. Hospice isnt helpful in this. They only prescribe medications (which she is having a hard time with because if stomach cancer) and basically expect caretakers to be nurses, albeit with support.
She liked being in the hospital today. I think she feels more secure and comfortable knowing they can help her by IV, etc. Would a nursing home be like that?

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You need to find out right now if hospice was cancelled when they told you to call 911. Medicare will NOT pay for both and she will be on the hook for the hospital bill if hospice didn't cancel.
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AlexandraM Dec 2022
I called hospice first. They said to call 911 for a lifting because we couldn't get her up off the floor. The paramedics thought she may have broken her hip, so we called hospice again, and they okayed her going there. Thanks for your concern. Hospice had made it clear to us that we need to call them first for everything. You are right though, some people may not know that hospice can drop you for sonething like that if not authorized.
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My mother was on hospice in a Memory Care AL at the time of her passing. Meaning she had caregivers looking after her all the time, helping her from her wheelchair to the toilet, in and out of bed, etc., AND hospice coming in to see her as well. So she had 2 levels of care going on during the last months of her life, which is how I wanted it. Now, as far as getting IVs while on hospice in a SNF, I don't know about that, if hospice allows for such a thing. That may be outside of the allowances of hospice care and what Medicare pays for, you'd have to ask. The whole idea of hospice is 'comfort care' and not 'curative care' which IV fluids may fall under the umbrella of. Since you have an unusual situation going on, you should ask hospice what rules they have pertaining to such a situation.

In the meantime, you could definitely get your mom situated in a Skilled Nursing Facility for full time care during her end of life journey. That would make me feel more comfortable, if I were in your shoes, and I'm sure your mom would feel more comfy as well.

I know how hard this whole journey is; I went thru it twice with both of my parents; dad with a brain tumor and mom with heart failure & advanced dementia. Both had hospice care in Assisted Living/Memory Care and they both passed quite quickly which was a huge blessing for all concerned. I wish you peace and God's help in navigating this difficult time of life.
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I don't believe you can take her home and do all the things she needs done - UNLESS, maybe, you hire 24/7 caregivers for her. But that creates more problems in management, time, and exhaustion. I do believe that at end of life, they can feel safer knowing that trained people are there to take care of them, so a nursing home might be best. There's probably no reason why you can't be at her SNF with her whenever you like and spend your time holding her hand rather than dealing with all the problems of in-home care. Then your home becomes your refuge again where you can recharge your batteries in order to deal with the rest of the story.
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Many hospitals have on site hospice units and many nursing homes provide hospice care as well. I would definitely end the trips to the bathroom as they are no longer safe. Use either Depends or a bedside commode if even that is doable. She may be safe just in bed at this point. My dad was on home hospice and toward the end he was in bed around the clock. Food becomes very unimportant. Our hospice advised us to keep up hydration, it’s painful to become dehydrated. Small sips are better than a lot of drink at once. When dad couldn’t drink anymore one smart nurse told us to make ice chips from his favorite drink. He enjoyed this until he died, it gave him both hydration and flavor. We spooned it into his mouth and it was easy for him to handle. If you don’t find the caregiving doable in home, that’s okay. In home hospice services aren’t designed to be full time care provided by them. Ask for a change to an on site hospice place. This time is so very hard, time both flies and drags. I’m truly sorry you’re going through it. Hold mom’s hand, I’m sure she knows your love and that’s all that really matters. I wish you all peace
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If the reason she is not getting fluids is because the cancer prevents her from keeping it down is one thing I would discuss this with the Hospice nurse. If not because the body is shutting down, I would ask if she could have IVs at home. Its one thing when the body is shutting down quite another when its because the body cannot keep it down. Hospice told you to call 911 remember. This is not a usual thing.

If Mom can't walk, then she will need to use Depends. Or, place a Commode right next to her bed. Lack of water probably caused the fall, you get lethargic when dehydrated.

Mom will need Hospice whether in ur home or in Skilled Nursing. Stomach cancer is not curable and painful. She will need that Morphine and will probably be out of it near the end.

Prayers for Mom and family.
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Are you using a private hospice service? Because a hospital-run hospice would train you on how to care for her, transfer her, etc.

When someone stops drinking and eating, it's a sign they're withdrawing from life. She has cancer, she's 88…she may be starting the dying process. Taking her to the ER…that's very unusual for hospice to recommend, though I can see why if you thought she may have broken some bones.

There are hospitals with hospice/palliative care units. Check with yours. Sounds like she needs more care than you can give. If nothing else, you can get some respite care that way, and learn some skills from the nurses there.
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Can you put a commode chair right next to her bed? It is no wise or safe for her or her assistants to be struggling to walk her far. Consider transitioning her to disposable briefs. I helped care for a women who was on home hospice with terminal colon cancer, and I remember walking her to the bathroom. In retrospect I would never risk doing that again. I'm sorry that your Mom and family is going through this. May you receive peace in your hearts.
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I think that a lot of us - most of us - have no idea what end of life looks like, we have no reference points beyond hollywood and television where perfectly coifed and made up people are surrounded by loving family and give that one last meaningful message, close their eyes and peacefully fade away. While we may understand that isn't real we are still completely unprepared for just how helpless and dependent people can become by the end of their life, and how much grueling physical and emotional labour is involved in caring for them, and not just for days but for weeks and months (or longer). I think that all of us who have cared for someone with high needs imagines that we will one day find that they have passed in the night, or perhaps after a very brief decline where we will do nothing more than sit vigil and maybe provide a sip of water while we tenderly wipe their brow.
You are asking about moving her to a nursing home or hospice facility and I think that is a valid option, they have the trained staff and equipment to help and in many ways they can provide a much better level of care than most of us untrained and unprepared caregivers could ever give. Talk to your hospice providers to figure out your next steps.
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NightHeron Dec 2022
Very well said. You're absolutely right about this portrayal of the dying process on the big and small screens.

The same goes for how care of the elderly is portryed in general, with the elderly person always quietly sitting out on the front porch with a quilt around his/her legs, dozing in the sun for hours while the rest of the family lives their lives. One day they're discovered slumped over in that sunny chair on the porch, and that's it.
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Is she wanting to go off Hospice and have IV fluids administered?
She will unlikely be able to process any foods given to her so it is just fluids through an IV. This is not enough to sustain her for very long.
You can ask Hospice for a Hoyer Lift. That will make getting her off the bed onto a commode possible and safe for you and her.
OR is it possible that you can not manage her level of care at home. If that is the case you can ask her to be sent, on Hospice, to a place that will better manage her care simply because they have more staff to help.
Medications can be given via patches and many are given via suppository ask your Hospice about this.
This is a decision your mom should make.
Go off Hospice and get IV fluids (she would probably not do well with tube feeding so all she would be getting is through IV's)
Continue Hospice and get comfort care.
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“Our” Skilled Nursing Facility was wonderful, and I was there regularly for short visits, and had placed two dearly loved relatives there, so I got a pretty consistent opinion of how the particular facility worked.

My LO was in hospice care for a year and a half, during the pandemic. She received palliative care for multiple large pressure sores, and the hands on care was meticulous.

Have you had a frank/friendly conversation with someone, one of the social service coordinators, perhaps, about your expectations regarding her care? Maybe to clear the air a bit about what they’re doing in relation to your expectations?

So after that, two points- first, your expectations for your own ability to provide full time hands on care may be dwindling as her needs increase, and she is literally TELLING you that she was more comfortable in a setting where she was receiving a higher level of care. No reflection (at all!), on YOU, just the way her situation has turned out.

Second, at least in our state, hospice programs work in hospital settings, in our situation seamlessly, and provide a smoother, more coordinated type of care than I’d ever have been able to provide at home for my LO.

Some of your comments about hospice may be reflecting your frustration at no longer being able to take care of her needs as well as the team approach can handle her.

You a good and caring daughter. Is it time to explore finding the best way(s) to care for her in a new, different way?
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