View unanswered posts | View active topics It is currently Fri Aug 29, 2014 6:38 pm



Reply to topic  [ 40 posts ]  Go to page Previous  1, 2, 3  Next
 Dad's rapid decline! 
Author Message

Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Dad's rapid decline! Wiping sweat
I keep a stack of micro-cloths next to his bed for a variety of reasons... I'll try that idea.

_________________
Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Wed Nov 17, 2010 1:45 pm
Profile

Joined: Sat Jul 19, 2008 10:29 am
Posts: 126
Location: Italy and Toronto (Canada)
Post Dilemma: need advice
My sister has been feeding Dad twice a day (lunch and dinner) during her days off (maximum 3 days a week). His jaws are pretty much locked all the time (either totally shut, or wide open). She gently pries his mouth open with a gloved finger (without the need for forcing it open) so that she can put the food in his mouth. With liquids (thickened to pudding consistency) for some reason he doesn't close his mouth and therefore swallowing becomes really hard.
When she is not there to feed him, my sister suspects that the staff have qualms about using the above method to open his mouth and therefore after a few attempts, they just give up and he doesn't get fed. She has had various meetings with the directors there who were also hesitant about using this method. They worried about it being humane! I guess in their minds using a little pinky just to prompt his jaw muscles to relax is an act of creulty, but leaving him to starve to death is justified! Finally they agreed to train the PSW's and to get them to do it. However, we have reason to believe that it hardly ever gets done.
We cannot find anyone even paid privately to do this because of the difficulty in feeding him and his frequent choking fits.
He hardly talks now at all, and therefore cannot complian of hunger and thirst. But whenever he is fed, he eats and drinks everything that is given him. He sleeps all the time, and has to be awakened for feeding. But when my sister is with him and she talks to him, although he cannot respond, he stays awake and seems to listen attentively. Once in a while, he manages to hold her hand and says in a very feint voice: "I love you sweetie!" with tears running down his face. It is the most heart breaking experience.
What can we do? Should we stop this forceful feeding even if he eats willingly? We have no living will and no directives from him. Should we do the feeding tube (risks involved with anesthesia, risk of infection, risk of him pulling out the tube)?
Are we forcing the issue of feeding? Many people tell us that we should just let go. But in my mind that amounts to leaving him to starve.
I know I've asked this before, but I need more input from my dear friends at this forum. No one can understand our dilemma better than you guys. My sister and I are extremely attached to our Dad who has been the most amazing self-sacrificing father. We actually have him on level 4 of resuscitation, which means they should do everything they can to save his life. We have been criticized often for this choice because most people in Dad's situation are on DNR. We have put in directives for the exact opposite of DNR.
Why? Because we cannot be the people who decide whether he lives or dies.
Is this wrong?
Please help us out with any ideas or input that comes into your mind. Sometimes I think that we have lost touch with reality and are blinded by our affection for Dad.
Sorry if I rambled on. My heart is full and I know that my sister and I will never ever get over these awful memories of Dad's suffering.
SS


Thu Nov 25, 2010 4:14 am
Profile

Joined: Sat Oct 06, 2007 4:28 pm
Posts: 728
Location: LA
Post Re: Dad's rapid decline!
My humble opinion. I believe what your sister is doing to be the right thing until/unless your dad pushes her hand away. At that time should you stop? Definitely. I think his sleeping shows the lack of food and water is not bothering him at this time. I think I would not rouse him for anything. You must also understand the choking is a sign that some of the food can very likely be going to his lungs causing pneumonia. A risk I would be willing to take. I would not consider a feeding tube. No one can decide that but you and your sister, neither would I judge you for any decision you make.

I'm sorry I do not remember if you have Hospice or not. Their literature helped me tremendously with understanding the final days.

Deciding that the time had come to stop fighting for his life was the hardest part of taking care of my husband, however, I reached a point with Mr Bobby that I needed to ask myself if I loved him enough to let him slip quietly away. I requested the paper work for DNR and I was the one to sign it after speaking with all four of our children and our dear long time primary care physician. The morning that Mr Bobby took his meds from his mouth and laid the pills on the bedsheet, saying firmly, "No more medicine" the nurse looked at me with a questioning expression in her eyes. I shook my head slowly in agreement, no more. He then slipped into a coma which lasted two days. I had done everything humanly possible but I could not make him well nor could I keep him indefinitely so it was time to let him go. This happened five days before Thanksgiving last year. Yes, I still wondered as the time went on and I remembered the vibrant Mr Bobby and missing him has been almost unbearable, but I return to the forum to read and remember what this illness is and I could not ask him to stay captured in his condition one day longer than he wanted.

You will always second guess any decision you make at this time so please make decisions with love for him and know that you are doing your best. You are, you know.

I don't know if I have helped or just made you more confused. God loves you and He cares.

Dorthea

_________________
"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Thu Nov 25, 2010 6:12 am
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3339
Location: Vermont
Post Re: Dad's rapid decline!
SS - my heart goes out to you. Before making any more decisions about life-prolonging measures you might want to ask yourselves "are we doing this for our dad, or are we doing this for us?" "Do we want to continue his suffering?" "What would he say if he could talk right now and make sound decisions?" "Would I want to be kept going in this condition that will continue to get worse and has no hope for getting better?"
My dad is so ill that he would not even be able to push someone's hand away, so if he didn't have an AD and have discussed this before, that wouldn't even be possible.
I'm sure you and your sister will do what is right for your dad. I believe letting them go is the ultimate act of love at this point, realizing that is my personal belief. I cannot stand seeing my dad tortured by this horrible disease and pray every night he doesn't wake up in the morning, for his sake. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Nov 25, 2010 9:17 am
Profile

Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Dad's rapid decline!
I agree with the previous posts. I love the comment that 'allowing them to go may be the ultimate act of love.' If we believe that there is something beyond life here on earth, it makes no sense to keep them here - especially when all quality of life is gone.

Graduation Day can be wonderful!

I wish blessings on you today!


_________________
Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Thu Nov 25, 2010 9:45 am
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Dad's rapid decline!
SS: I took care of my father during his last weeks dying of melanoma at home with the whole family there. I was the nurse so I did most of his care. I fed him as long as he was able to take food and water. None of us wanted to lose Dad--we loved him so much! But his body was riddled with cancer and he was ready to go. We had to let him. Your father's brain is riddled with Lewy bodies and he cannot get well. Death is his only escape. I know it's hard and I'm saying this with tears in my eyes because I know exactly how how you feel. I will probably have to go through this same process with my husband when his time has come with LBD.

Remember, it is not you who are choosing whether he lives or dies. That has already been decided. It's just a question of how long you want him to hold on before the inevitable happens. He may be hanging on for your sakes. I certainly am not critical of the way you are handling the situation but I question the order to resuscitate him if his heart stops. The likelihood of a positive outcome from CPR is negligible to nothing. He would likely end up intubated on a ventilator if he survived the unpleasant experience at all. Please give careful thought to that. God bless you and give you His wisdom. I care!!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Nov 25, 2010 11:11 am
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Dad's rapid decline!
What has your father indicated as to whether he wants a feeding tube or not? Can your sister speak with him about this along with a social worker?

I have been told by many hospice workers that the dying don't "starve." Endorphins kick in such that they feel no hunger.

Honestly, I don't think any amount of additional input from us is what you need. You and your sister need to discuss this with someone you trust (religious person, close family friend, social worker at the facility), and make the best decision you can. It's very difficult situation when the family has not discussed these things in advance. But you will make the best decision.


Thu Nov 25, 2010 11:52 am
Profile

Joined: Sat Jul 19, 2008 10:29 am
Posts: 126
Location: Italy and Toronto (Canada)
Post Re: Dad's rapid decline!
Thank you dear friends for your wisdom and comforting words. I agree totally with everything you've said, and will definitely rethink the directives regarding actions to get his heart re-started and putting him on respirators, etc.. If my sister agrees we will take him to level 3 of life-saving interventions.
but,
as long as he has desire for food and eats it willingly if only we can find a way to give it to him, can we be justified in not taking further measures (feeding tube) to provide him with nourishment? Doesn't he feel hunger and thirst? This decision would have been easy if he would refuse food, but he never has.
How will I live with myself knowing that I starved my father to death? I can already feel my nerves unravelling as every fibre of my being rebels against this thought.
I most certainly believe in a loving God and the progress of the soul after death. I just don't want this life and death decision regarding my father to be left to our insufficient and probably misguided directives.
SS (Shomy)


Thu Nov 25, 2010 11:53 am
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Dad's rapid decline!
A friend who is a hospice RN, has posted elsewhere on the topic of the dying don't starve:

"Also, just my own personal experience, but I have seen many patients with dysphagia (difficulty swallowing) who opted not to get a feeding tube. Without any hesitation, I can say that I never saw a single one of them of them ever 'starve to death'. Those words bring up such awful images of suffering. I just don't want people to have the idea that if they choose not to get a feeding tube, then those images are the alternative."


Thu Nov 25, 2010 11:57 am
Profile

Joined: Sat Jul 19, 2008 10:29 am
Posts: 126
Location: Italy and Toronto (Canada)
Post Re: Dad's rapid decline!
Dear Robin,

My Dad has left no living will and we had never discussed these issues with him while he was cognitively capable of making decisions.

There is no point in talking to him because he is incapable of responding in any form (no speech). Due to this lack of response and reaction we actually have no idea whether he even understands half the thinks we tell him. We don't even know how he feels... We talk to him all the time and he seems to listen attentively, but we get no feedback from him at all.

I guess you're right, no one can tell us what is right or wrong and what we should do. But it does help to get the point of view of others who have experienced the same dilemmas. I treasure every word of response I get from all of you.
Shomy.


Thu Nov 25, 2010 12:02 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Dad's rapid decline!
Shomy: In my opinion, you are totally justified in not getting him a feeding tube. Feeding tubes are an important life-preserving measure for non-terminal patients. My husband once had a feeding tube and a tracheostomy for a severe neurological problem from which he recovered back in the 1980's. But keeping a dying patient alive with a feeding tube seems very unnatural to me, although some people do it. I guess you have to ask yourself: If this were me in his condition, what would I want? I am an RN who has worked in Hospice in the past. People who are undergoing the dying process do not experience hunger or thirst. This is probably why you have to wake your father in order to give him food or water. His body may not really want it. Just something to think about. Again, God bless and guide you. You are obviously a very loving and comforting caregiver. Your father is blessed in this regard.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Nov 25, 2010 12:53 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Dad's rapid decline!
Shomy,
Perhaps the next time your father grabs your sister's hand, she can ask him something like "do you want to keep living like this?" She can talk to him about a feeding tube. He seems capable of responding in rare moments.
Robin


Thu Nov 25, 2010 1:01 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3339
Location: Vermont
Post Re: Dad's rapid decline!
Shomy - in addition to the questions I posted earlier this morning, I just thought of something else to share with you. I read this in a book about dementia - whatever you and your sister do, YOU are not responsible for your father's ultimate death, the disease is responsible for it. Has he been kept alive by interventions, like medications or medical procedures? If so, those are no more natural than force feeding a person. If he can no longer eat, to me, this is nature taking over.
I have always been very close to my dad, and thus I cannot stand to see him suffer with a disease that cannot do anything but get worse, although at this point I don't think he can get any worse. For me, I love him enough I want his suffering to stop even though he is the only parent I have now. He has suffered for a year and a half and it is horrible watching him wasting away and losing all ability to move (except shaking his fist when he's angry) and swallow. He cannot even turn his head. I hope this is not offensive to you, as I write it in the spirit of trying to give you one person's perspective..... Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Nov 25, 2010 1:29 pm
Profile

Joined: Sat Jul 19, 2008 10:29 am
Posts: 126
Location: Italy and Toronto (Canada)
Post Re: Dad's rapid decline!
Thank you everyone for your replies. All your words make perfect sense to me. I keep reading them over and over again because they make perfect sense logically in my mind, but I keep reading them to make them penetrate also in my heart.

I am now almost convinced not to do the feeding tube. However, once I get to Toronto (3 weeks left!) to see my dad in person, I will be in a better position to judge for myself his actual condition and whether his body is really starting to shut down. And of course my sister has to also agree with me...

By the way, I will never be offended by anything any of you my dear friends can say. It is as if you are speaking directly to my heart. God bless you all.

Shomy.


Fri Nov 26, 2010 12:11 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3339
Location: Vermont
Post Re: Dad's rapid decline!
Shomy - if you read the hospice literature about end of life, you'll see that they recommend people not be forced to eat or drink, and their organs are getting weaker and cannot process the food well. They are actually more comfortable NOT having food and NOT having water. Even offering them food and drink may make them think that WE wish that they would get nourishment and they are taking it only to please us, even though they'd be more comfortable without it.
It is so hard to know what to do when they can't communicate at all. Can your dad blink his eyes "yes" and "no" to questions, or is he not able to understand how to do that?
My dad stops eating and drinking for a while, as much as a day, then he'll pretty clearly say "ice cream" or "juice" or "drink". When he asks, we give it to him. We continue to ride this horrible roller coaster hour to hour.
All the best, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Nov 26, 2010 1:47 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 40 posts ]  Go to page Previous  1, 2, 3  Next

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010 phpBB.fr