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Hello everyone, I’ve been reading all your great questions and answers and hope you can advise. My mother is on dialysis and has high blood pressure plus progressed dementia. She’s 77 yrs old and lives in assisted living. She’s had four falls in the past five weeks. She has rallied more times then I can count. Last Monday she was sent to the hospital for high blood pressure. I found out she had been refusing her medications. Over the course of this week doctors said she needed a nursing home, then on Friday, they said it’s time for hospice. She wasn’t eating or drinking, couldn’t swallow and could hardly talk. I told them no feeding tube (per her directive). Today is Sunday and I’ve been seeing her everyday. The nurse said she’s getting better and took all her meds today by mouth and drank juice. She had a small bite of food. She’s been sleeping all day today. I was finally at peace today knowing her wishes are to not suffer or be revived. I don’t know what to make of this now and the doctor isn’t around. As hospice is about to be set up, is she really getting better or is this the rally before passing? I’m so confused, two days ago she had bad breathing and couldn’t recall words. She refused dialysis and meds, so they told me there’s not much they can do. I’ve put my life on hold for five years now (first few years taking care of her on my own) and was about to move her and I to another state for my job. Then I cancelled our move to make her arrangements. I don’t know what to do. They said she could do hospice or go to skilled nursing. Any advice would be very helpful. I’m an only child and she has no family left. I can’t sleep and feel like a bad daughter as I don’t want her to suffer. My dad suffered for six years before he died, I don’t want to see this happen again. When she wasn’t in the hospital she would be at dialysis or sitting in her chair watching lifetime but not interacting much. It’s not a life. She told me Friday she was ready to go but now that she’s more alert and taking medications I don’t know what to do…

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She had a "good day" and that is what it was. She may have good days and bad days until she finally passes. If she refuses dialysis and her medications, she will pass sooner.
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My 96 year old aunt had another stroke last year, went on hospice for a while. Got better and is off hospice.
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Kaysdaughter: Imho, as she had not been taking her medications, it may take a while for her body to adjust. Perhaps you should set up hospice. Prayers sent.
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I don't have enough experience to know what "normal" looks like, but I can certainly confirm that this does happen. Older people's health hinges on so many things and can change radically. When my mom was in her early 90's there were two separate occasions when we notified the family that they should see Mom if they wanted to see her alive and responsive. In each of those times changes in medication changed her outlook considerably. The one that was the most frightening involved her insulin. She had been taking all the same medications for years and doing very well. Her activity levels slowly declined as her knees and legs gradually worsened, but her general health had been as good as could be expected. She then started going into coma-like states when she was only semi-conscious and her blood pressure plummeted. The EMT's would revive her and she would be OK for a week or so, then go out again. After taking her to a new doctor who first reduced and then eliminated her insulin, she improved dramatically.

Her former doctor had initiated papers for hospice and DNR notices. She lived for 3 more years without another episode after she quit taking the insulin. Another time she had developed problems with a blood pressure medication. Her final 3 years she spent a lot of time sitting, watching TV, coloring in adult coloring books, putting together jigsaw puzzles and other sedentary amusements. She died of kidney failure a little more than 3 years after the first incident and more than 2 years after the second time she was believed to be dying. Those of us caring for her sometimes wondered whether we should have asked the EMT's for comfort care rather than reviving her.

I wouldn't say that her final years were easy ones for her or for us. Nevertheless, she managed to find pleasure in the pursuits that she could manage. My sisters and I are very happy that her long decline is finally over. In her final year or two she ate less and less that we could see, though she lost little, if any, weight. She may have been sneaking forbidden snacks, or her body may simply not have needed much nutrition to support sitting all day.

Your confusion is something I really relate to. We had no clue what was going on. We pretty much kept resigning ourselves to simply providing company and attention to immediate concerns like food and water. Mom spent most of her time alone with one of us checking in on her for a few hours each day. She refused to relocate to a care facility and was able to make her own decisions, so we could do little more than check in on her. It is a really difficult thing to acknowledge that there is nothing you can do but wait to see what happens, but sometimes that is what there is. Good luck and sympathy to you. I understand and share your frustration and surprise. At least for us there were 4 of us to compare notes and assure each other that we were not crazy, that Mom was simply zigzagging her way to the end of her life. There were often times growing up in a large family that I wished I were an only child, but the final years of my mother's life? Never. Not even once. I hope you can find within yourself the strength and peace you will need to wait this out. It is really hard. You will do it, though, because you have to. Just know that you are not really alone, that many of us have shared this experience. It is just the way it is with your mother. You cannot change it. Hugs.
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I am riding the same roller coaster. My mother has late mid-stage dementia. Then she appeared to slip into the advanced stage. After about a month non-responsive, my mother opened her eyes and talked, and ate when fed. Another month has passed and she is now feeding herself and walks a bit. I, too, am an only child, and was her caregiver until mid2021.

We’re all in similar boats. One day’s smooth sailing and the next we’re navigating stormy seas. We’re doing our best but are not in control.
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My heart hurts for you too. Mom 96, was on hospice for almost 2 years (thru most of covid, she even got covid 2 weeks before the vaccine was offered in her memory care facility). 3 different times they said she was spiraling down, then rallied a week or 2 later. Finally they discharged her from hospice, my nightmare, I had valued their support so very much. Fast forward 8 months, she is back on hospice and is visited weekly by a nurse who monitors her vitals and re evaluates every 2 months her need for service. Her dementia is so advanced she can not make her needs known, does not know me and can not answer any questions (example Are you having any pain? Her answer You tell me!) Say yes to hospice, and keep her where she is They will keep her comfortable which allows the body to stop fighting to stay alive. Without dialysis her body will shut down also say no to extra food supplements (tube feeding etc.) She has expressed her readiness to go, respect that desire. You have done a great job supporting her, she would want you to enjoy your life.
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There exists such a thing as a person "rallying." My husband did this once during his last two weeks--nothing spectacular, just enough to make you scratch your head with wonder.

Providing comfort, not care, is often the best, and usually the only thing, we can do. It's hard and it hurts.

I hope you can gather some peace from her saying she's ready. Take that as you've done your best and she's taken it out of your hands. It's what she wants.

Peace and love be with you both.
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Natasana Mar 2022
Del356. Your response struck a chord in me: " Providing comfort, not care, is often the best, and usually the only thing, we can do. It's hard and it hurts." It gave some perspective to a situation that is hard to see all at once.
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My mother, who never missed a meal in her life, stopped eating after getting out of the hospital last year. I put her on hospice (not for that but because we were done going to hospitals), and she lived on Ensure milkshakes for almost seven months.

Some days (or two or three) she wouldn't drink her Ensure at all, then she'd go back to having three a day. She'd randomly decide to eat dinner, then stop eating the next day.

Yes, she was dying, and yes, she belonged on hospice, but dying isn't a nice straight line sloped downward. It takes a circuitous route sometimes, and every time I warned my brother she was on her way out she'd bounce back a bit.

This behavior started on Jan 1 last year, and she didn't die until July 26 -- and she knocked back an Ensure the day before she died.
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Your mother has asked to be relieved of dialysis. As an old RN it is written into my advance directive that I would never, even temporarily accept dialysis or feedings by NG and PEG, thereby knowing that my torment would be much lessened.
If dialysis is needed truly, then when it is removed your Mother will fade gently with the help of dialysis, and she will pass.
She still can take most of her medications.
She is ready to go. You have discussed hospice.
Hospice is not there to kill your mother. Many patients get better in dialysis because it is a tremendous relief to them to know they are going now to do, with support and care for their symptoms, and have peace at last. Knowing that makes them better. The improvement is either longer or not, dependent on how much support they require merely to live. Dialysis is one of the "big" supports.
My advice as an RN? Your Mom is ready for peace. You had acceptance. Please don't second guess. Some patients live beyond the 6 months predicted. I know that you know that is likely not the case for your Mom without dialysis. Most patients pass quickly and gently; my own Mom was gone in two weeks.
I wish you and your Mom peace, acceptance. I am 80, and I have seen a lot. I understand fully that this is our final destination (and I often think, our final "adventure"). My heart goes out to you both.
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Human bodys are not like automobiles, which once they breakdown they won't run anymore. Terminal people still have some regenerative functions left. In some cases the illness becomes a roller coaster. Many terminal patients show an unexpected "improvement" just before they pass away.
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My mom is going through that now. In hospital under palliative care after severe stroke. They encouraged us to remove feeding tube and IV. She was completely non-responsive but breathing on her own. Then all of a sudden 2 days ago she looked at my and said my name! I was so upset, afraid we have made the wrong decision. It was so difficult, but she has gone back to being unresponsive. My dad made the choice to remove fluids based on knowing what she would want. But it is an extremely difficult process.
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My experience is almost identical to yours. My mom, age 76, suffered with type 2 diabetes, high blood pressure, progressive vascular dementia due to a stroke in 2019, and stage 4 kidney failure, progressed to Stage 5 this past year. She has no living relatives, except for me her only child and my husband. She lived with us for 5 years prior to her stroke, and then agreed to go assisted living because her cares were above our ability. After her stage 5 Kidney failure diagnosis, we decided hospice care was best in her assisted living; she did not want dialysis. The first month after her diagnosis she was walking, talking, eating, and drinking. The hospice staff said she was stable and doing well,, even her blood pressure dropped; we actually thought she was getting better, and hospice said sometimes they do and are reevaluated every 6 months. Suddenly, she declined rapidly to state of total care in two months. She couldn't swallow, eat, drink, talk, walk and was very confused. Hospice care was wonderful! They helped with weekly baths, nursing, meds, and a compassionate Chaplin. With each visit she would get further away from reality, but still remembered us and our kitty we would bring for her to pet and love on. One day her breathing got very labored and I could tell she was in pain. She passed away the very next morning; me by her side. My mom was in hospice for 3 months. She passed on December 7th, 2021. There was a moment of energy she had prior to her decline and passing, where we thought she would recover. It sounds like your mother is going through something similar. Either way, be grateful for the extra time with her in this high energy state, but prepare yourself for decline as well. God bless you!
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I am sorry you are facing this. I think I understand your mom no longer has dialysis. When my Dad {71} was in your moms condition we stopped dialysis. Dialysis was keeping him alive. He had some other health issues and vascular dementia. His doctors agreed. He died 7 days later in a lovely hospice hospital. His life had no quality to it. We felt letting him go was the right decision. Not an easy decision but we did it for him. I have seen people go in and out of hospice also. God Bless.
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Yes. People go in and out of hospice many times before they die. Not unusual at all.
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No matter when God decides to take your mom, hospice will be a help to you.

My mother has a hospice aide that comes in and helps her bathe twice a week. Her hospice nurse is officially with her once a week, but stops in multiple times per week, as she sees other patients at my mom’s Memory Care. These women are ANGELS. They treat my mother like GOLD.

Best wishes to you.
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I have had this happen, not once, but four times. My mother was very ill, put into an SNF (Senior Nursing Facility, not hospice), but told to prepare for the worse. A few days later, completely back to normal. Then Covid, again DR. call, expect the worse, better a few days later. Followed by two infections, around 8 months apart. She has never left the SNF and after the last serious infection, progressed to hospice in place. This was almost 5 months ago. Her first illness was over two years ago and since that day, we have been told every few months to prepare for her death. She is now 89.

It is so hard to live this way. My father died while she was initially placed in the SNF so I am her POA and do everything. It is an emotional roller coaster and means I have to keep putting my life on hold.

To answer your question, YES, people can get better in hospice care, so much so they no longer need it. I have decided that I can no longer put my life on hold and don't feel guilty if I can't see her every week. When the time comes, it comes.
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My Mom had cancer, was in hospice then got well enough to not need it, but not well enough to continue chemo. Ok. A few months later, more evaulation, blood work, imaging and the cancer is winning and she's back in hospice. I was lucky, the hospital also ran the hospice program and they were great.
Otherwise, as lealonnie1 wrote, get that evaluation ASAP.
Also, if your mother is being cared for (not by you) please take some time for yourself and get a good cup of coffee or ice cream, something that you like. Take a break, go for a walk. Turn off the phone for awhile and breathe.
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Get her the hospice evaluation & go from there. My mother was 95 and on hospice; she went into bed on a Tuesday morning & was semi-comatose; hospice called me to say there was a big change in her condition; to prepare for the worst. We went to see her; she didn't even open her eyes, that's how bad it was. That night, the nurse from Memory Care called me; she fell out of bed, in spite of the bolster pillow barrier they'd put up, and was found on the floor. I was like WHAT? The nurse said she had been sitting in her recliner watching TV & schmoozing & laughing with the staff earlier!!!! I felt like my head was going to explode. So I thought, okaaay, it must have been a fluke that she was in bed that day, semi-comatose, and that she was fine. Truth was, she'd had a small rally that night. She wasn't fine; she went back to bed after they'd found her on the floor, and never got back out of bed again; she passed away the following Tuesday evening.

I am/was an only child too and managing my parents' lives for 10.5 years, always second guessing myself the ENTIRE time. It's hard, to say the least, and we never know what the 'right' thing to do is!!!! I say get hospice on board, leave her in Assisted Living WITH hospice who's a second layer of help & support, and let the chips fall where they may. My mother's ALF/MC would NOT ask her to leave no matter HOW much care she needed once hospice was on board; most ALFs are like that; so don't move her to a SNF unless you absolutely MUST. That's my advice. Check with the ALF now to see what their policy is.

Take it day by day & try not to overthink anything. God will take your mom when He is ready to do so. She may have a rally or two left in her, however, who knows?

I'm sorry you are going through this with your mother; I know EXACTLY how you feel & how torn you are. It's a horrible feeling, too, although you're doing nothing wrong at all! Truth is, it's a terrible thing to be responsible for someone else 100% b/c it's overwhelming! I made all these decisions for my dad in 2015 and he died under hospice care too, so it turned out to be the right move then, as it was now, for my mother. It's just hard and very draining to go through it. I hope you have a husband or a child who you can lean on for support now.

Best of luck. Sending you a hug & a prayer for peace.
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Kaysdaughter Mar 2022
Thank you so much for your answer. I thought I was going crazy. I just don’t know what to do if they tell me this week, that she can go home and not need hospice. Her assisted living facility had said she could do it there. She had a seizure in 2017 and I’m so grateful to have this extra time but I see her suffering and she is no longer there. What is ALF?
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