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As many of you know, I made the decision to put my 91-year-old mother into hospice care on January 2. She'd been eating less and less since November, had a leg wound that turned septic in mid-December, and was in the hospital from 12/17-1/2. She hasn't eaten anything solid since she went in the hospital over a month ago, and she's dropping weight like crazy. She's barely opened her eyes in that entire time, and she just sleeps all day. She also has been refusing to take her medication.


I've been getting regular updates from the nurses at her memory care facility as well as from the hospice nurse, and while she's barely conscious and refusing everything but a single Ensure most days, she does still have pretty good vital signs and is strong enough to take a swing at the nurses when they poke and prod her too much. The nurses send me pictures of her, and she looks dead already. I've spent every day waiting for "The Call" to tell me the end is near.


This morning the nurse sent me a text saying, "Mom says 'Good Morning!'" along with a picture of my mother sitting up in bed, bright-eyes and bushy-tailed with a big grin on her face. This is my mother about six YEARS ago, not even a couple of months ago! The nurse said Mom wanted her to turn on the lights in the room, asked why she was in bed, and was very compliant about taking her meds and swigging her Ensure. She then requested a chile relleno for lunch, which I dutifully brought to her.


I went tearing over there to see through the window for myself, and sure enough, she was dressed, weirdly clear-eyed (she has terrible macular degeneration and normally looks blind with eyes half-closed), and sitting up in her wheelchair. Her legs, which have been horribly swollen with edema, are thin, and I saw her ankles for the first time in probably 20 years. She's always been pretty heavy, and her middle is still large, but her legs are like sticks compared to how they once where. She was definitely weak and didn't seem strong enough to cough when she needed to, but she was far healthier than she was pre-Covid lockdown. As I said, she seems like she was in 2014, except I don't think she was totally clear on who I was, which is a recent development since her hospital stay.


Yes, the hospice organization sent us the book about the stages of dying, and yes, I know about how sometimes a person will rally a bit before the end, but do they rally to THIS extent, or has she magically turned a corner? Considering she hasn't eaten as much in two months as she'd eat in a normal week, I can't believe she has this kind of energy, and I would assume that just today's activities will wipe her out tomorrow, but what on earth are we seeing here?


Has anyone else experienced anything like this?

She can definitely be having that rallying moment or time before she passes, or maybe she's actually rallying......which is doubtful, but who knows? My father's vital signs were very strong right up until a few hours before he passed away, and then they started to decline quickly.

I'm sorry you are going through all of this. The emotional ups & downs are exhausting. Not knowing WHAT the heck to think or expect is horrible, too. Sending you a big hug and a prayer for peace in the midst of the chaos.
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Reply to lealonnie1
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As a nurse (retired after 50 years), I have seen 'the rally before the final crash' many, many times. My first time was in home health. Woman dying of severe heart disease. She was literally blue (cyanotic) from the waist down. She had owned her own dance studio, been a professional dancer. She became bedridden. She had a wonderful circle of friends who were with her 24/7. One visit she barely had a blood pressure or responded. I let her friends know to call us at any time and we would come out. I fully prepared them that she would most likely die that night.
I arrive the next am, hear a lot of noise down the hall in her bedroom. She was out of bed teaching them Irish step dancing!! Most rallies last a couple of days (as did this woman's).

My beloved Dad's rally was stunning. Up out of bed, reading financial documents from the condo board and could hear conversation in normal levels. He had been profoundly hard of hearing despite hearing aids for years. Dad's rally lasted TEN days. I am forever grateful we had that special time with him.

The difficult part of this phenomenon, is 'letting down' your emotions that you have prepared for the impending death and feeling it is not happening soon. Take this last blessing, it will bring much comfort later. Godspeed
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One day when I arrived for my daily visit at my mom's nursing home I was enthusiastically told she was "talking up a storm" - this from a woman who had been almost completely non verbal the entire 18 months she had lived there. She was asking for her glasses (her vision had regressed to the point she had stopped using them) because she had somewhere she needed to be. And it wasn't just mindless prattle, when I sat with her and asked questions her replies made sense - in hindsight I wish I had more of a meaningful conversation with her but I was totally unprepared. Like you I had a suspicion what this might foretell and I'm still disappointed that the people working at mom's NH reacted the way they did, if I hadn't taken the initiative to be so self informed I would have been completely blindsided by her abrupt decline and death not long after.
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Heather10 Jan 22, 2021
Cwillie:

I am sorry that your mother's rebound was just a short rally.

However, as mentioned in numerous postings here. There are times when people recover and go on to live many years.

So please do not be too hard on the staff. If they are experienced staff, they have likely seen both short and long rebounds.

They really could not guide you because there is no valid guidance.
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The medical community is good at research and tracking trends. Looking at large numbers of people with similar conditions is the baseline for prescribing an individual's treatment. However, each person had his/her own unique biology and responses will differ from whatever is "standard." What you are experiencing is your mom's uniqueness.

I would suggest NOT questioning too deeply whether she is turning a corner or rallying for the moment. People do not live for long with limited nutrition or hydration. Her current prolonged fasting may have temporarily helped her problems with overloaded fluids and a very damaged heart. Enjoy the moment of clarity. Talk to her on the phone. Have other family members and friends do the same.
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UPDATE 1/22/2021 --

Well, I guess she was just a little too perked up for the gods, and the day after her big rally she was diagnosed with COVID. Unbelievable.

She was in a rehab hospital the last week in December, and the health department has now traced six other people who were there when she was and have now tested positive. I feel so bad for the staff at that hospital, because they worked so hard to keep everyone safe.

Mom's got a minimal cough, no fever, and they have her on oxygen to help dry out her lungs a bit. She's back in bed again and sleeping all day, but she's still drinking at least one Ensure each day.

I guess we'll just take this change as we have all the others -- one day at a time.
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Heather10 Jan 23, 2021
So Sorry to hear this.

Yes. All you can do is as you said: "take things one day at a time".
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The rollercoaster ride is real and painful. My 95 yr old Mom with Alzheimer's, macular degeneration, profoundly hard of hearing, is in memory care almost 4 years and on hospice 20 months . She has lost weight, stopped eating, slept 20 hours for a few weeks and hospice suggests she maybe nearing the end, only to rally, gain weight and be more awake over and over and over. Each time we hold our breath and pray she just stays asleep; we lost our Mother years ago, but her body refuses to give up. We thought the positive covid test earlier this month would do it. No, 10 days later she was walking with the aide and her walker ( she has not walked in months). Everyone says enjoy the remaining days etc. That is not possible. 1. Facility has been on lock down since March. I can not visit in person. 2. She has no clue who I am, where she is etc. and can not answer questions or hold a conversation ( example me "Hi Mom, did you enjoy lunch?" - while sitting at dining table. Mom "We need to finish the plan, it is not doing it". ). 3. I could sit outside 6 feet away with a mask, but she can not see me, hear me and it just makes me so sad. 4. Her worst fear was to linger for years in this half gone state and there is nothing we can do to help her. There is nothing to enjoy. Sorry to be such a downer, it has been a long goodbye with no end in sight. I wish everyone in this position good luck and stay strong.
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Hazelthebunny Jan 23, 2021
Dear GrandmaC, I completely understand and am so sorry these times make it so hard for you to visit meaningfully with your mom.

i am forever grateful that my grandmothers passed in October before the start of the pandemic. It’s so hard on loved ones not being able to be there, provide affection, hold their hands, and with the GD masks on even communicate with elders who may rely on lip reading to some extent due to hearing problems.

Heck, even I rely on lip reading to some extent and I’m only 41!

i understand and you have every right to feel down. I hear you!!
xo
hazelthebunny
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My mom does this all the time. She was actually in a coma 7 years ago due to a thyroid storm and everyone said it was “time” and she came out of it just fine. Then had several other health scars after that too. This summer hospice called to tell me it was “time” and 2 days later she was perfectly fine. We have been on this roller coaster for at least 7 years now. So, hopefully it is more than a simply “rally” and your can enjoy lots more time together!
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jacobsonbob Jan 22, 2021
Some people rally more times than Fred Sanford (on the old TV show "Sanford and Son") recovered from all his "heart attacks"!
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My father diagnosed with cancer in dec 2019, everyone kept saying it's suspicious. I steered him off surgery which I feel guilt for now. While looking at second opinions during shutdown he got a spinal infection, three hospitalizations later (spinal infection, sepsis, kidney infection, bed sore) last June, I was told he was a hospice patient, I made the decision he really was not fully there. Prior to the last hospitalization he refused food and meds. They told me he had a few weeks, two months later he was kicked out and I put him in rehab, six weeks after that he was home. He is fairly stable now, has been home since October. He still has cancer and I have been told that there is not much they could do now that wouldn't further weaken him, he is 87 and it has been a rollercoaster of emotions the whole year. He was basically bed bound the two months in hospice- although weak and very thin he is eating pretty regularly, bed sore cleared up. It is confusing, I'm thrilled at the turn of events but have a hard time trying not seeing the dark cloud above - it's a strange kind of limbo. The whole year was a roller coaster of emotions I am trying to appreciate him while I have him, everyone tells me that each person has their own journey. As hard as it is to watch the physical decline watching his emotional pain, he seems pretty depressed, has been harder for me. He was a pretty active guy last year and now the most he can do with help is get to the recliner, the bathroom and the dinner table - it's been difficult on him, me and my mom. Of course everyone is at home but I don't think he can appreciate the bigger picture, covid and how lucky he is to be at home because everything is difficult for him now. That being said I am amazed at where he is today compared to six months ago.
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One of the most important things I learned this pass year is that everyone is different and they have their own personal journey with this disease. Back at the first of August last year, mom’s kidneys starting failing and the Hospice nurse told us she had a couple days to 2 weeks left. We were devastated because she had not had any major changes for so long with her disease and we had gotten comfortable in that. Mom acted as if she wouldn’t make it through the night during this time and we called the family in. After about two weeks of this, she started getting better day by day. I would ask the nurse what is going on because I just don’t understand and she would reply that sometimes patients rally before they pass. I didn’t understand it and I searched for any answers online I could find, including here. Finally I realized I would never find the answers I was looking for because it was all in her time and we had no idea what that time was. So I started enjoying the extra time that we had with her and stopped worrying so much about when. Mom got so much better over the next 4 months and even her nurse said it was a miracle. She started eating again, smiling and would try to talk every now and then, although we could never understand what she was trying to tell us. The intake of food wasn’t helping her much though because she was already skin and bones from her last decline and her kidneys were still failing. Although we knew she was still declining, we starting getting comfortable again. Her good days seem to outweigh her bad days and we were relieved. Then it seemed all of a sudden, mom had another hard decline on December 16th and she passed on December 20th. Mom’s rally lasted 4 months and we were so thankful we had that extra time with her to hold her hands and tell her how beautiful she was. I watched her take her last breath that night and I realized then that she passed when it was her time to go. Mom shouldn’t had made it through August but she was a fighter and my dad just couldn’t let her go and I think that had a lot to do with her rallying for so long. It’s so natural to wonder what’s to come and when because it’s such a roller coaster ride that you feel like you will never get off of, but like my mom showed us, she left in her own time when she was ready. I pray you have many more months with your loved one and enjoy this time you have with them. ❤️
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The first time my brother was in the ‘end of life’ hospice facility he walked out! He ended up improving so much that he left.

Awhile later, when he returned, it was indeed, the end of life for him.

When he rallied the second time, I told the hospice nurse that he would walk out again. She responded, “No, not this time.” I realized that I was in denial that he was dying.

If you knew my brother, you would get why I felt that way. He was a cat with nine lives! At last though, he was on his last life.

The nurses told me that during their nursing careers they saw people they thought for sure were at the end of the road recover and those that looked like they would recover take a fatal turn for the worse. No one can truly say.

I do feel that hospice nurses overall are so in tune with signs of an upcoming death in a person.
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