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End of life care
Iris L.
Posted: Monday, January 23, 2017 1:00 AM
Joined: 12/15/2011
Posts: 14699


Nadine60, one of the caregiver spouses, posted about her late husband's experience with respite care and palliative care.  His story is actually horrible and the opposite of how it should be.  I am linking it here so that members will be aware of what should not happen, and what their family members should be on the lookout for.  


We can be in charge of our end of life.  We have to know what we want, and what we don't want for ourselves.  Our next-of-kin also needs to know what we want and how to provide it for us.  They need to know how to be assertive with hospice and palliative care workers and professionals.


The story is upsetting.  If you don't want to read it now, bookmark it or save it, and read it later, or let your POA read it.


MC / PALLIATIVE CARE - THINGS WENT SO WRONG!

https://www.alzconnected.org/discussion.aspx?g=posts&t=2147531407

 

Iris L.

Michael Ellenbogen
Posted: Monday, January 23, 2017 6:39 AM
Joined: 11/30/2011
Posts: 1852


It is very sad and also happens to often and we just don’t hear about it. That is why one does not want to end up in a home.

 


The_Sun_Still_Rises
Posted: Monday, January 23, 2017 7:27 AM
Joined: 7/24/2015
Posts: 3030


THANKS for saving me from have write a post about it!  

You two must have gotten gether and thought up all the ways you could help and support me here - aren't you so special.  <3

I guess, now that I have this support from you, I will have to think up some other things I can have you two do for me...awesome!    

-------

 

ANadine60 wrote:
Sun, yes you can share my story by all means.  It important for people who are not aware to know this information.  What happened to me and my DH, I don't wish it on anybody.  God Bless

---------------------------------------------------

Thank you so much, Nadine60, I will get the word out there.  Again, I am so sorry what happened....but so grateful that you had the wherewithal share this, my hope is that it can begin changing this horrible practice. 

<3


 

 


BlueSkies
Posted: Monday, January 23, 2017 2:18 PM
Joined: 2/24/2016
Posts: 1063


Shocking and horrible!  

I pray that never happens to me.  I am terrified of drugs.  I am so sensitive and always have severe side effects to almost all drugs my doctors have given me.  I don't think I would last long in a home.  

My heart goes out to anyone and their family who go through such a devastating experience.


MaryW
Posted: Thursday, April 13, 2017 12:17 PM
Joined: 3/3/2017
Posts: 175


Awhile back, someone posted asking what death with dignity means to us?   Those posting seemed to have such a negative view of death with dignity, but I fail to see how the end of life in Nadine's post had dignity.  I watched each of my parents waste away and die of cancer, and with all the medical interventions, there wasn't any dignity to be found. 

Mary


Iris L.
Posted: Thursday, April 13, 2017 1:03 PM
Joined: 12/15/2011
Posts: 14699


Mary, this is an example of what should not happen.  I posted it as a warning to members to work with their family for a better outcome for themselves.


Iris L.


dayn2nite2
Posted: Thursday, April 13, 2017 2:11 PM
Joined: 6/20/2016
Posts: 1237


Nadine also believes that hospice purposely overdoses people so they'll die.  So consider the source.

She has come here under various names for years with the same story, some horrific story about how her LO was put in a substandard nursing facility and then hospice, who murdered the LO.

It's an agenda, take it for what it is.


jfkoc
Posted: Thursday, April 13, 2017 5:24 PM
Joined: 12/4/2011
Posts: 13733


wow...how do you know this?
dayn2nite2
Posted: Thursday, April 13, 2017 9:00 PM
Joined: 6/20/2016
Posts: 1237


The writing style is histrionic like a few other "hospice" posts I've read over the years.  First they talk about how the nursing home abused or neglected their LO, then they go on to say hospice killed their LO.  It's the same person, someone who only believes in taking care of someone at home with no help and they have a personal grudge against hospice.

Frankly, I'd worry more about being abused if I was taken care of at home by someone who wouldn't get any help and nobody else ever laid eyes on me.
jfkoc
Posted: Thursday, April 13, 2017 9:32 PM
Joined: 12/4/2011
Posts: 13733


Hard to understand why someone would come back and post the same story and only change their name. Very sad thing to do and frightening for readers.
dayn2nite2
Posted: Friday, April 14, 2017 12:47 AM
Joined: 6/20/2016
Posts: 1237


Because every time they post it they get horrified reactions from the new audience.  Just like all the "new" names that pop up and find 4 year old threads that 1 particular poster has posted in and respond to them gushing about how helpful the information is.

That's happened A LOT over the past few weeks, always a new person with 1 post finding a long-dead thread and bringing it back from the dead, so to speak.
MaryW
Posted: Friday, April 14, 2017 7:11 AM
Joined: 3/3/2017
Posts: 175


Iris, how would you suggest that we do that?

Mary


Iris L.
Posted: Friday, April 14, 2017 12:16 PM
Joined: 12/15/2011
Posts: 14699


Mary, this is what being a Dementia Pioneer is about.  Figuring out what we want and what we don't want.  Making plans and not just letting things happen to us.  We have to go by our own life experiences and what we can learn from what has happened with others.  I know about my own family's experiences, and I read the boards for more experiences.  This is a great but hard topic to discuss.  You might want to begin a new thread.  


Iris L.


MaryW
Posted: Friday, April 14, 2017 2:43 PM
Joined: 3/3/2017
Posts: 175


Reading about others experiences, as well as my own experience with my parents, suggests to me that there is not a lot of dignity in our ends. How would you suggest that we go about planning for the end?   What kinds of things should we include?

Mary


Iris L.
Posted: Friday, April 14, 2017 7:17 PM
Joined: 12/15/2011
Posts: 14699


Mary, this is a huge topic leading all the way up to the end.  How do we want to live the rest of our lives?  Who do we want to be around, and who do we want to be around us?  Where will we live--home or a facility?  How long will we stay on meds?  What about hospice and palliative care?  What about feeding towards the end?  


When I first began to look into the area of terminal illness, I did a lot of research about what the terminally ill person wants.  The conclusion of my reading was that they want to be around the people they love, and to live the same lives they had been living.  So that gave me peace.  Truthfully, since that time, I have expected the rest to fall into place on its own.  I know that won't happen; I need to become more proactive in planning.  Thanks for the nudge, Mary.


Iris L.


MaryW
Posted: Saturday, April 15, 2017 6:51 AM
Joined: 3/3/2017
Posts: 175


So sorry Iris, I guess I thought you posted this subject because maybe you had something you wanted to share or some insight to guide us in what kinds of things we should be thinking about.  As you know, I live alone so this subject is one that I think about and have to contend with.  I certainly did not mean to put you on the sot or to make you uncomfortable, hope you will forgive me.

Mary

 


Iris L.
Posted: Saturday, April 15, 2017 2:25 PM
Joined: 12/15/2011
Posts: 14699


Mary, I posted this thread as a warning to PWDs of what we should try to avoid.  I wasn't aware that this comes from a repetitive complaint from a member who comes back under different names.  I read the caregiver boards and there are many posts about end of life.  It's not something we want to think about, especially at our stage when we think that this is a long way off.  Actually, there are many topics that are important for PWDs that are not discussed in the outside world with us in mind.  We should be able to discuss them here on these message boards.  


Mary, I did not know that you live alone. I thought you lived with a disabled son.  I must be thinking of someone else.  I posted a thread about PWDs who live alone without a natural (family) care partner, and I was the only one.  Some members live alone but have adult children available.  Actually, the family members will take care of end of life and a lot of other issues, with or without our involvement.  But it's good for us to let our wishes be known before it's too late.


Mary, don't be hesitant to post.  This is how we get to know each other, as much as we can, in this virtual world.  


Iris L.


MaryW
Posted: Saturday, April 15, 2017 4:03 PM
Joined: 3/3/2017
Posts: 175


Must have missed it.  Found this site a few weeks ago, joined and then forgot about it.  Read some, posted and have been trying to figure things out here.  However, no I am not that person.  I'm on my own, was an only child and have no children.  So when my parents died, that left only me.  Although I have a pretty good circle of friends, we don't really talk about the Alzheimer's.  Lately I have been thinking about what is going to happen when I get on down the road a little bit further.  However, I sense that this is a subject that members are uncomfortable talking about. 

Mary


julielarson
Posted: Saturday, April 15, 2017 4:49 PM
Joined: 9/30/2015
Posts: 1154


Mary, I say talk about it.. It is part of the experience and it needs to be talked about.. If people are uncomfortable with it oh well it still needs to be talked about.. This is not all roses and wine here.. Some of us are progressing and we need to talk and be aware.
Iris L.
Posted: Saturday, April 15, 2017 6:06 PM
Joined: 12/15/2011
Posts: 14699


Mary, that thread was back in the fall.  I am so glad to have found you!  I am also traveling alone.  Perhaps we can help each other with our plans.  I have a brother, but he lives across the country.  He would be my natural care partner if it comes to that.  


We have talked about this in the past, but recently we got off on tangents.  We can go back to topics that concern us, Mary.  Feel free to introduce a topic that concerns you.  I have a topic to post after Easter.


Iris L.


MaryW
Posted: Saturday, April 15, 2017 6:38 PM
Joined: 3/3/2017
Posts: 175


But see that's just it, why would I post a second topic on the same subject (end of life care) if it is a subject that no one wants to talk about?   Iris, I was trying to talk with you about future planning, but you have been deflecting my efforts here, so I am a little confused by your comment that you want to work with me on that.  In posting a thread, I wouldn't even know where to begin because I don't have anyone to come take care of me when that time comes.  But that's okay, I really don't want to make anyone uncomfortable here and will just let it go.  Thanks anyways.   

Mary


Iris L.
Posted: Saturday, April 15, 2017 6:47 PM
Joined: 12/15/2011
Posts: 14699


Mary, members tend not to respond too much to threads that get too long.  As you can see, it is just you and I posting now.  


The topic of this thread was more of a warning of what not to do.  Members might be interested in the topic if worded a different way.


Even if no one is interested right away,  if YOU are interested in a topic, Mary, you should post about it.  It may take a while for us to respond, because we have to think about what we want to say.  Also, not everyone reads every day.  Sometimes a thread may go for a few days before someone responds.


Of course, Mary, you don't have to post.  But I get the impression that there is something on your mind.  Sometimes, for me, just posting a thread helps me to clarify in my own mind what I am thinking about.


Iris L.


Michael Ellenbogen
Posted: Saturday, April 15, 2017 7:34 PM
Joined: 11/30/2011
Posts: 1852


Mary I would start a new thread as suggested. There are some that feel more comfortable then others to speak about that subject. You should never feel that you cannot bring up a subject. The worst that can happen is no one knows how to reply but at least you tried. 


grandmalynda
Posted: Saturday, April 15, 2017 7:48 PM
Joined: 12/3/2016
Posts: 376


Mary, I do think this a topic that should be discussed among those who are open to discussing it.  You may not have as many responses as you would like, but those that post will offer valuable insight (based on my experiences).  Please keep posting on any topics that are on your mind.

--Lynda


MaryW
Posted: Sunday, April 16, 2017 6:32 AM
Joined: 3/3/2017
Posts: 175


Thank you, Lynda. 

It seems silly and redundant to start a second topic with the same name when this one already exists. I don't believe starting multiple topics with the same name will cause people to feel more comfortable talking about it. So I will just leave it go.  Thanks anyways.

Mary


 
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