Humbly requesting help

[Tin Man]

This is too close to my experience…

 

[VolNExile]

This is too close to my experience…

I know. You've slogged down this long road too, as have Slice and Volly and so many others.

It's so hard to do, even when you know it's the right thing to do.

 

[vollygirl]

Kind of no idea where to put this, because it's sort of glad, a lot of sad, and definitely not mad:

My mom is now in hospice care status. There isn't a specific expectation that she will die in the next six months (the usual definition of qualification for hospice), but she has met several other criteria to earn the right to be Left Alone in peace. She will remain in her current room in her current assisted living facility, surrounded by her own furnishings and pictures and plants, now followed by hospice care physicians and nurses who will ensure that she is comfortable and happy. She will never again be put in an ambulance and taken to the ER, put in a room filled with endlessly beeping monitors and people coming in and out and in and out, doing everything useless except turn off the beeping monitors (which would be useful), never again have to be admitted to the hospital, wearing a hospital gown and nothing else, in unfamiliar settings, and given drugs and enduring endless interruptions to have her temperature checked, delirious and hallucinating, with a condition that can't be fixed, so why is she even here?? She will be allowed to live out her remaining days in familiar surroundings, cared for by kind people who understand and accept and support how life goes towards the end, and with minimal disruptions.

And when things do start to wind down, which they will, as we are all living creatures who all eventually die, she will have plenty of comfort care - oxygen and morphine if necessary and skin lotion and fever reducers and music and company as she completes her journey in this life.

Donna, I'm sending all the love from another daughter who's been through it to you.

 

[Tin Man]

I am sympathetic. I’m struggling with expression. Too much death too recently. I’m still working through it.

 

[VolNExile]

I am sympathetic. I’m struggling with expression. Too much death too recently. I’m still working through it.

You've really gone through the mill over the last six months.

 

[joevol33]

Kind of no idea where to put this, because it's sort of glad, a lot of sad, and definitely not mad:

My mom is now in hospice care status. There isn't a specific expectation that she will die in the next six months (the usual definition of qualification for hospice), but she has met several other criteria to earn the right to be Left Alone in peace. She will remain in her current room in her current assisted living facility, surrounded by her own furnishings and pictures and plants, now followed by hospice care physicians and nurses who will ensure that she is comfortable and happy. She will never again be put in an ambulance and taken to the ER, put in a room filled with endlessly beeping monitors and people coming in and out and in and out, doing everything useless except turn off the beeping monitors (which would be useful), never again have to be admitted to the hospital, wearing a hospital gown and nothing else, in unfamiliar settings, and given drugs and enduring endless interruptions to have her temperature checked, delirious and hallucinating, with a condition that can't be fixed, so why is she even here?? She will be allowed to live out her remaining days in familiar surroundings, cared for by kind people who understand and accept and support how life goes towards the end, and with minimal disruptions.

And when things do start to wind down, which they will, as we are all living creatures who all eventually die, she will have plenty of comfort care - oxygen and morphine if necessary and skin lotion and fever reducers and music and company as she completes her journey in this life.

It's hard to accept that we're all going to leave this life, but we have to unfortunately. We're praying for you, and your family.

 

[VolNExile]

Donna, I'm sending all the love from another daughter who's been through it to you.

Thanks, you've been one of my inspirations through this. It's just so freaking awful and painful and sad and necessary. And awful.

 

[ArdentVol]

Kind of no idea where to put this, because it's sort of glad, a lot of sad, and definitely not mad:

My mom is now in hospice care status. There isn't a specific expectation that she will die in the next six months (the usual definition of qualification for hospice), but she has met several other criteria to earn the right to be Left Alone in peace. She will remain in her current room in her current assisted living facility, surrounded by her own furnishings and pictures and plants, now followed by hospice care physicians and nurses who will ensure that she is comfortable and happy. She will never again be put in an ambulance and taken to the ER, put in a room filled with endlessly beeping monitors and people coming in and out and in and out, doing everything useless except turn off the beeping monitors (which would be useful), never again have to be admitted to the hospital, wearing a hospital gown and nothing else, in unfamiliar settings, and given drugs and enduring endless interruptions to have her temperature checked, delirious and hallucinating, with a condition that can't be fixed, so why is she even here?? She will be allowed to live out her remaining days in familiar surroundings, cared for by kind people who understand and accept and support how life goes towards the end, and with minimal disruptions.

And when things do start to wind down, which they will, as we are all living creatures who all eventually die, she will have plenty of comfort care - oxygen and morphine if necessary and skin lotion and fever reducers and music and company as she completes her journey in this life.

Absolutely right, Exie
.
i know too many people who dont understand the workings of hospice, thinking it's a place where the morphine flows freely, with it increased daily to hasten the inevitable. Ive witnessed f the nursing home horrors, and will try to move heaven and earth to ensure my final days are not spent either in a hospital or nursing home

my thoughts and prayers

 

[Vol since 77]

Kind of no idea where to put this, because it's sort of glad, a lot of sad, and definitely not mad:

My mom is now in hospice care status. There isn't a specific expectation that she will die in the next six months (the usual definition of qualification for hospice), but she has met several other criteria to earn the right to be Left Alone in peace. She will remain in her current room in her current assisted living facility, surrounded by her own furnishings and pictures and plants, now followed by hospice care physicians and nurses who will ensure that she is comfortable and happy. She will never again be put in an ambulance and taken to the ER, put in a room filled with endlessly beeping monitors and people coming in and out and in and out, doing everything useless except turn off the beeping monitors (which would be useful), never again have to be admitted to the hospital, wearing a hospital gown and nothing else, in unfamiliar settings, and given drugs and enduring endless interruptions to have her temperature checked, delirious and hallucinating, with a condition that can't be fixed, so why is she even here?? She will be allowed to live out her remaining days in familiar surroundings, cared for by kind people who understand and accept and support how life goes towards the end, and with minimal disruptions.

And when things do start to wind down, which they will, as we are all living creatures who all eventually die, she will have plenty of comfort care - oxygen and morphine if necessary and skin lotion and fever reducers and music and company as she completes her journey in this life.

So sorry to hear as my family has watched this hospice event play out twice with my grandfather and uncle. My thoughts and prayers are most definitely with you and your family through this difficult time

 

[ArdentVol]

Didn't he have the babysitter/ nanny who refused to get vaccinated, caught COVID, and brought it to the family? -- I truly can't remember all the horror stories from those who tried to keep on keepin' on through 2020 and beyond, so I apologize if this was not his story.

And that's very interesting that all the AIW episodes were preceded by fevers. Makes you wonder about triggers from encephalopathy.

and for all y’all dealing with this, especially the little guy.

your memory is correct,

Doctors were amazed at how well he described the episodes. From my understanding the first came several days after his fever broke and occurred after playing in the backyard. They seem to occur if he is late going tp bed. Only one episode this weel/

btw, he told his mom & dad this week that he and his girlfriend wont get married until they are both 20

 

[VolNExile]

Absolutely right, Exie
.
i know too many people who dont understand the workings of hospice, thinking it's a place where the morphine flows freely, with it increased daily to hasten the inevitable. Ive witnessed f the nursing home horrors, and will try to move heaven and earth to ensure my final days are not spent either in a hospital or nursing home

my thoughts and prayers

Thanks, Ardent. I have pretty firm advanced directives (for myself) drawn up, but I’m making some changes, based on so many nights worrying through all the scenarios at 2 a.m.

I will add to mine: if I have a clear dementia diagnosis, and my caretakers and loved ones see that I am frightened, worried, and depressed, I’m also adding the “no antibiotics” clause.

We (they) can always huddle and temporarily suspend these if appropriate, but basically, I would not want to be “cured” of some temporary infection, if that might be a sign - a chance - from above that it was time to go.

Our bodies weren’t designed to last forever. I have seen the hell of bodies outliving minds twice now, and I don’t want to go through it myself. Many cancers can be overcome, much heart disease can be managed with care; dementia is incurable. I’m ok with letting go of this life when it’s time, and moving on.

 

[VolNExile]

your memory is correct,

Doctors were amazed at how well he described the episodes. From my understanding the first came several days after his fever broke and occurred after playing in the backyard. They seem to occur if he is late going tp bed. Only one episode this weel/

btw, he told his mom & dad this week that he and his girlfriend wont get married until they are both 20

Wise beyond his years!

 

[VolNExile]

So sorry to hear as my family has watched this hospice event play out twice with my grandfather and uncle. My thoughts and prayers are most definitely with you and your family through this difficult time

It’s a hard path to walk, but it does help to know that others have done the same. Thank you.

 

[ArdentVol]

Thanks, Ardent. I have pretty firm advanced directives (for myself) drawn up, but I’m making some changes, based on so many nights worrying through all the scenarios at 2 a.m.

I will add to mine: if I have a clear dementia diagnosis, and my caretakers and loved ones see that I am frightened, worried, and depressed, I’m also adding the “no antibiotics” clause.

We (they) can always huddle and temporarily suspend these if appropriate, but basically, I would not want to be “cured” of some temporary infection, if that might be a sign - a chance - from above that it was time to go.

Our bodies weren’t designed to last forever. I have seen the hell of bodies outliving minds twice now, and I don’t want to go through it myself. Many cancers can be overcome, much heart disease can be managed with care; dementia is incurable. I’m ok with letting go of this life when it’s time, and moving on.

amen


will expound later

 

[ArdentVol]

Wise beyond his years!

felt he was lookng through me the day he was born he was
i think he was 2 when he wanted a sister.
... and he got a firecracker in Hallie

 

[CPA]

My mother was in hospice over 6 years and was able to remain in assisted living until her last few months. The pandemic was worst when we couldn't se her for 7 months. When she lost her hospice status the last few months of her bedfast life, we knew a nurse who operated 2 homes for elderly who no longer qualified for assisted living and families didn't want nursing home. Mother was able to get hospice again shortly before her death to prevent a trip to ER. The description of elderly with dementia to ER is gut reaching and very accurate. My prayers are with all of you.

 

[ArdentVol]

my little man in stl
[photos this week show him hplding his battered Blue Bunny
assume he must be worrying that g\he will another wonderland episode

 

[508mikey]

my little man in stl
[photos this week show him hplding his battered Blue Bunny
assume he must be worrying that g\he will another wonderland episode

This thing needs to taken care of

 

[malinoisvol]

Heavenly Father, Give all cancer fighters comfort when they are in pain. Lay your healing hand on all and remove every cancer cell so that they may be healed! Amen

 

[ArdentVol]

the grandkids and mom since Dad will be away from home for conference beginning Tuesday for rest of week/ He and Hallie (2) have never been apart for a night thanks to COVID restrictions. Thanks for all--6yobhasnt had an AIW episode for at least 5 days as far as we know,

Mrs AV, who has history of feeling something is wrong, is very anxious since flight will coincide w/. winter storm

 

[vollygirl]

the grandkids and mom since Dad will be away from home for conference beginning Tuesday for rest of week/ He and Hallie (2) have never been apart for a night thanks to COVID restrictions. Thanks for all--6yobhasnt had an AIW episode for at least 5 days as far as we know,

Mrs AV, who has history of feeling something is wrong, is very anxious since flight will coincide w/. winter storm

Prayers for safe travels.

 

[Vjcvette]

So it wasn’t a thyroid thing with my mom; it was a TIA (mini-stroke.) She’s very uncoordinated today and having speech difficulties…

Prayer for your Mother to be healed quickly and completely

 

[ArdentVol]

late to post that i appreciate your recent thoughts and prayers

after minor delays amid nor'easter son arrived at newark international and my grandson hasnt had any bad AIW episodes this week

 

[ArdentVol]

iowa sr
only 1 fg in last 20 attempts

 

[malinoisvol]

Heavenly Father, Give all cancer fighters comfort when they are in pain. Lay your healing hand on all and remove every cancer cell so that they may be healed! Amen