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 End stages? 
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: End stages?
Kate,

How fortunate that your mother was so clear in her wishes. It can be a challenge for the family to carry out those wishes. If she chose you and your sister to be her healthcare proxies, then your responsibility is great.

I've known two people who went into a diabetic coma shortly after stopping dialysis. Their deaths were quick and peaceful.

Robin


Mon Dec 13, 2010 3:20 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3426
Location: Vermont
Post Re: End stages?
Kate - I'm sorry you are having to make these decisions, but I know just what you are going through, having been there so recently myself.
My mom died from misdiagnosed DVTs which became pulmonary emoboli, which cut off her O2 supply and she went into a coma. The drs. told us that she probably experienced a few seconds of very intense chest pain, then went unconscious.
The only person I know who has gone into diabetic coma, told me that she was driving, felt extremely tired, pulled to the side of the road to "take a nap" and woke up in the hospital about a week later. She had no pain at all and just felt like she went to sleep.
Who really knows what these situations feel like unless you've experienced them, but I hope the responses you get are helpful.
I'm sure you need lots of support right now so please come back often. I'm glad your mom has an advanced directive and has made your family aware of her wishes. 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.


Mon Dec 13, 2010 3:33 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: End stages?
Thanks, everyone.

My mind says that Mom did not make these decisions lightly and that this is what she wanted and still wants. But my heart keeps second guessing my mind and wondering if she has changed her mind but can't tell us. I know my mind is right and I know my heart is unlikely to catch up. This is the hardest thing I have ever done.

Mom's body is like the EverReady Bunny. It just keeps going and going. It hits a few bumps, but never stops. Her mom was 94 when she passed, albeit after five amputations (doctors insisted on them back then). Mom could easily outlast her mom if we kept reacting to every illness with extensive medical care. But I have to look at Mom's past three hospitalizations as if they were God giving us opportunities to let her go. And her opportunities to let go. Now, after spending so much time in the dementia unit with Mom, I have a better understanding of what blessings those opportunities had been. Mom's dinner companions are at various stages, each disturbingly more advanced than Mom. I can just see her mind worrying about reaching the same point as Edna, who barely wakes and is hand fed. I try to tell her that I am going to try to keep her from getting to that point. But it is still going to be very difficult to take the next opportunity.

Pat, thanks for the medical information. I've been searching the web to see if I can find just what you've told me. Either I'm using the wrong criteria or there isn't much out there. Everything seems to be about prolonging life. Lynn, Robin, your support means a lot to me. I know, Lynn, that having to let your dad go was terribly hard and that it is all so very raw to you still. I'm sending you a hug. Robin, thank you for your strength.

I often feel that you are all like this big soft chair that I can curl up in and cry and then go out in the world and keep on keeping on.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Tue Dec 14, 2010 10:52 am
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Joined: Sat Jul 19, 2008 10:29 am
Posts: 126
Location: Italy and Toronto (Canada)
Post Re: End stages?
Dear Kate,
I can sure relate to your situation. My sister and I are currently facing the same sort of dilemmas.
I remember during our last meeting with Dad's cognitive neurologist regarding Dad's final stages, she told us that for someone in Dad's current condition, pneumonia could be considered his best friend because it brings about an opportunity for the suffering to end.
I wish you and all caregivers the wisdom and strength to face these decisions.
Shomy.


Tue Dec 14, 2010 12:17 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: End stages? Waiting for the end - Shomy
Our family waited four years for my mother to pass away at 104 in September. Her body was still in good condition but her mind was gone. It was an eternity. I agree that there are times when pneumonia would be a welcome guest.

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


Tue Dec 14, 2010 1:29 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3426
Location: Vermont
Post Re: End stages?
My dad died 2 weeks ago, and I can honestly say that his death was not as hard to deal with as was seeing him suffer so much, especially the past few months. Several of his best friends were so upset seeing the terrible state he was in, they didn't visit the last few months he was alive. They'd leave his room crying.
If I had it to do over again, I'd move my dad where I live, where quality of life and thoughtfulness about how to care for a person in the final stages of terminal illness is the norm in the medical community. Palliative care is big here and I don't think we would have been forced against our will and legal rights to keep him on the litany of meds his CNPs and drs. kept insisting he take where he was.
Personally, I think it was unethical for them to have continued treatment which just prolonged his suffering. According to his attorney, it was illegal for them to go against the POA who was representing his wishes too.
To think of the active, vibrant, independent person he was a couple of years ago being reduced to someone who could only move his lips and just barely pick up his right arm from the elbow down, lying in bed 24/7 and having his diapers changed, unable to feed himself for almost a year, losing 135 lb., barely able to communicate but being kept on meds that made him aware of how bad off he was is just unconscionable to me. I don't see how anyone could justify that that was the right thing to do for him.
Do I sound angry? I'm sure I do, because I am very angry that he endured way more suffering because of all the "treatments".
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.


Tue Dec 14, 2010 3:49 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: End stages?
Thank you, Lynn. You sound just like I do when talking about my grandmother and her five amputations. Something I swore I would do everything I could to help Mom avoid. You've strengthened my resolve by reminding me of how I really feel about the topic.

Thanks.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Tue Dec 14, 2010 4:57 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3426
Location: Vermont
Post Re: End stages?
Thanks Kate. I know that for some people, quantity of life is more important. I just can't bring myself to wanting someone to suffer longer like my dad. My AD is very lengthy and I've added items about dementia so my kids and husband and I hopefully will not have any questions about my wishes if I develop dementia.
For anyone interested in a very detailed AD for themselves, Vermont Ethics Network has developed a form that I think anyone can use. Here's the link to their site: http://www.vtethicsnetwork.org
Not fun to think about, but necessary! 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.


Tue Dec 14, 2010 8:06 pm
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Joined: Fri Jun 05, 2009 4:15 pm
Posts: 82
Location: Onsted MI
Post Re: End stages?
I have been reading through these last 4 pages of End Stages and it has helped me so much. First of all, I have been caring for my husband for the last 4 years pretty much full time....I have considered putting him in a nursing home and Lynn's message came home to me so clearly - I will never do that. I have been wondering what the end would "look" like and this has helped me to realize it will be a while probably. He does sleep 14 - 17 hours a day and he chokes a lot. Some times he coughs after every bite especially at breakfast. He still takes his pills pretty well. He has lost lots of weight 120 lbs and is a walking skeleton at 6foot 4".

I guess what scares me the most is his falling. He starts taking tiny steps and colapses. Sometimes I can break his fall so he goes down gently.

He has end of life directives that he signed years ago, which I am thankful for. He is in hospice but they have had to re-evaluate him twice. I don't know how long he can go on getting re- upped. They have been very helpful and kind. But I still think he has pretty much time before he's in the "end stages"....anyone have comment on what you think.


Fri Jan 14, 2011 11:27 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: End stages?
Dying from Lewy is dying from some other, usually associated, cause, for example:
1. Infection, e.g., sepsis from UTI or pneumonia
2. Dehydration, leading to cardiovascular collapse
3. Hepatic or renal failure related to the combination of medications and reduced body mass, hydration and nutrition.

I'm sure there are others. As a person of faith, I would also have to add that it's really in God's hands. Others will not agree and I respect their opinion. We are continuing to treat infections at this point. At what point would we not? I pray I will be given the wisdom to make that decision when the time comes. We have already rejected the feeding tube option so I'm praying that we don't have to face that particular crisis. :cry:

_________________
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.


Fri Jan 14, 2011 11:54 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: End stages?
Pat... I looked at your list and wondered what the technical description of 'failing to swallow' is. My mother could not 'swallow' anything twelve days before she died and hospice did not force her to eat or drink. My father ate a juicy plum one day and the following day, he could no longer swallow. He was gone three days later. Is that part of 'dehydration'?

My mother's death certificate said 'asperation pneumonia.'

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


Sat Jan 15, 2011 7:57 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: End stages?
Aspiration pneumonia is an infection or inflammation of the lungs caused by a swallowing deficiency. It's interesting that her death was attributed to that instead of dehydration since you said she had not taken any food or fluids in two weeks, if memory serves [and it often doesn't].

On edit: Inhaled liquids could result from problems other than dysphagia [trouble swallowing].

_________________
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.


Last edited by mockturtle on Sat Jan 15, 2011 11:53 am, edited 1 time in total.



Sat Jan 15, 2011 10:12 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: End stages?
Your memory is correct. They moistened her lips with juice and my sister thought that was cruel. Mother would lick her lips as if she enjoyed the taste of the juice. We didn't understand the 'cause' on the death certificate .... but she was 104 and so it didn't matter.

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


Sat Jan 15, 2011 11:42 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3426
Location: Vermont
Post Re: End stages?
jweeks - What do the hospice nurses say about his possible longevity? Does he have any other physical ailments/conditions/diseases? Our experience with my dad was that he slept about 18 hours a day all summer, then around Sept - Oct (he died Nov. 30) he slept almost all the time. Even when we visited he would doze off, but sometimes he would be quite awake and alert. Literally a minute before he died he had been wide awake and conversing with the CGs who were giving him a bed bath. He'd eaten breakfast that morning and the hospice nurse told me he probably had at least 3 weeks left. Then he just stopped breathing. He had lost 135 lb. in 18 months. It is so hard to know exactly when the end will come, but the hospice nurses have so much experience that I'll bet they can come pretty close in their predictions most of the time.

_________________
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.


Sat Jan 15, 2011 12:44 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: End stages?
jweeks -
Is your husband always escorted when he walks? Can the escorter cue him to take large steps. The small step-taking is a big danger, as you know. Can he be taken from place to place in a wheelchair for safety?
Robin


Sun Jan 16, 2011 1:27 am
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