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 Saving their lives 
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Joined: Fri Jun 19, 2009 11:23 am
Posts: 200
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I am prompted to put in my two cents worth also because these questions are all things I have been asking myself.
My husband and I both have advanced directives, however I wonder what I would do if he stopped breathing while we were alone. In my professional life I have had many occasions to perform CPR. (We had to have recertification yearly) Sometimes with good results, some no results.
I keep asking myself if for some reason if he were unresponsive, would I be able to NOT do CPR? I guess I have to trust my Lord to do the right thing. This is scary stuff.
Mary


Wed Mar 10, 2010 10:27 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
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Quote:
I guess I have to trust my Lord to do the right thing.
Mary, this is what I hope, as well--that He will make it plain when to intervene to keep my husband alive and when to let him go. Sometimes my faith falters when I think I'm alone in the situation. Thank you for reminding me Who is really in charge! :)


Wed Mar 10, 2010 10:35 am
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Joined: Tue Dec 29, 2009 2:28 pm
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Location: Minnesota
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Oh, I have so many conflicting thoughts about end of life decisions. Before we even had the LBD, or any form of dementia diagnosis, but after Mom was hospitalized with blood clots, She and I both took care of end of life documents.Mom (also 87) and I have experienced, through her parents and through my paternal grandfather, various forms of dementia and the toll it takes from both the patient and the family. My mother''s parents were extremely strong people in character and spirit. To see both of them suffer with dementia, Grandpa with Alzheimer's and Grandma with dementia that, though it started earlier, I believe was fueled by the trauma of five amputations. Yes, five. At that time, the thought of letting a patient die, making her comfortable but doing no more, was considered tantamount to killing her. Each time my grandmother begged to be allowed to die and each time there was an amputation to "save her life." These are the experiences that formed my mother's and my beliefs about end of life.

We found our elderlaw attorney through our insurance agent. Turned out that he was considered among the top three elderlaw specialists in the state. Though dementia is not specifically named, he did add language about "when I am no longer able to function at (a specific level)" and "when life is no longer meaningful for me." These were meant to refer to dementia, but not limit the terms to dementia. If you haven't made up medical directive, will and power of attorney documents with your LO, and they are still lucid enough to declare their decisions (the attorney should advise you if he or she believes this is questionable) then go to an elderlaw specialist. More than other attorneys, they will know the language to use to deal with dementia.

About the same time, while Mom and I were making end of life decisions, I asked Mom straight out what she wanted me to do if I couldn't wake her up. Her answer "let me sleep, let me go." She has made it clear, on several occasions, that she is not afraid to die - that she has made her peace with God and with life, and that she has done all she can in this world.

All of this seems very prepared and very reasonable, right? The problem with this is that I panic when there's a problem. I didn't know this until Mom was hospitalized with the blood clots. So, when we drew up the documents, I got POA but my sister, who is far stronger and, as a junior high teacher, able to deal with crises, has medical POA.

Since Mom lives with me, it will still probably fall on me as to whether to call for help or let her go, It will be the hardest thing I will ever do, but I pray that I have the strength to do this last thing for her when the time comes. I come from a long line of strong women (tough old birds, Mom says) and I hope they will all be with me when I need them.

Annie, I agree with you that my job here is to help Mom through the process of letting go. I hope I can help ease her, with grace and love, out of this world and into the next, where I trust that those who love her and have already passed will embrace her in the next step of her journey.

Lynn, get an elderlaw attorney. He or she can help you find the alternatives available to you and draw up the right documents. Some even work on a sliding scale. When ours saw the state of Mom's finances, he immediately cut his fee.

Pat, if you still can, talk with your husband about what he wants in whatever circumstance. When Mom told me that I should let her go if I couldn't wake her, it did place a burden on me but it also gave my conscience freedom from questioning and guilt. When your LO actually says it - not implies it but actually says it - the relief is incredible.

I really am terrified of those last moments. But I am also prepared. I've learned what I can and Mom has prepared me by making her wishes clear. Now, if I can only do it...

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]


Thu Mar 11, 2010 12:35 am
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Joined: Sat Mar 28, 2009 6:01 pm
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Thanks everyone for your suggestions and support. The meeting went very well. Instead of putting my husband in the hospital, his doctor has asked the VNA nurse to monitor him, and to draw blood here at home for analysis. Meanwhile he is going to start taking lasix to reduce the edema, along with potassium, and we are keeping track of his urine output. (It's easy because he wears a condom catheter which we empty into a urinal where we can measure the amounts.) The doctor was totally supportive of keeping him at home and is going to explore hospice with the visiting nurse. We haven't seen the doctor recently -- not since last spring-- so she has to rely on my description of his decline, but now can also review the situation with the nurse. I am so relieved!

Irene, as to whether or not someone deep into dementia feels pain, I think it might depend on the person. With the UTIs, my husband screamed when he peed, and he howls with pain as he struggles with swallowing due to spasms of the esophagus. When he stands, he has a sharp pain in his thigh on the useful leg (his other leg can hardly bear any weight any more), and although we are holding him up, he is afraid of falling and he cries out. He was always a very expressive person, a writer and lecturer, and I think he now uses sounds to convey the feelings that he cannot any longer put into words. Doris

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Thu Mar 11, 2010 1:50 am
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Joined: Thu Jul 03, 2008 11:05 am
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I brought the pain issue up with the head nurse at Mother's ALF. Mother has osteoporosis and used to complain about pain in her back frequently, but she has indicated pain in any way for probably a year now. Even when the Lewy-related muscle contractions pull her over at a 90-degree angle, she doesn't grimace or groan or frown or anything. The nurse said that in dementia, it appears sometimes the brain cells no longer perceive pain. Like the cells that refuse to let them walk or talk or that cause hallucinations or delusions or outbursts, they just don't function properly any more. Pain can be an important message that they no longer receive.

Garnet


Thu Mar 11, 2010 7:56 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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I guess the way the signals to and from the brain are scrambled in LBD varies from person to person and from day to day. My husband feels pain, but whether or not he feels all pain, how would we know?


Thu Mar 11, 2010 8:12 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
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This pain issue is interesting - my dad's deep pressure sore doesn't seem to hurt it at all, yet if one of his caregivers puts their hand wrong in lifting him he screams. Interesting.... I'm glad his pressure sore doesn't hurt! Lynn


Thu Mar 11, 2010 10:53 pm
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Pressure sores almost never cause pain because the nerves in the affected area are impaired by the ischemia. This is why they can often be far advanced before they are noticed.


Thu Mar 11, 2010 10:59 pm
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Oh - this is something I've never even had to think about before. Thanks for the info. Pat.


Thu Mar 11, 2010 11:04 pm
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I am a RN in an ICU, and also the daughter of a LBD pt who is 85. I constantly see Drs. trying to persuade families to keep going, "if we do this..it won't last a long time...." but is does, and sometimes there is no going back. As a daughter making these tough choices right now, I can see how people do get persuaded to do things that they wouldn't want to do...you get caught up in emotion, guilt...etc.....

My mother has recently taken a turn for the worse, much more confused, now almost comatose at times, not eating or drinking. I just got home from the nursing home, where i again repeated...no feeding tube...no hospital...just please make her comfortable. I KNOW what i want to do....but boy is it hard!!! Everyone just stick to their heart, remember those discussions that you had with your LO when they were able to communicate their wishes. Just remember they picked YOU as their Health Care Proxy because you will do what THEY told you to do!!!

I've seen many a time people not wanting to let go because it will hurt the person who is alive....lets remember its only about the person going through it!!! "They are what matters most"

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Laraine


Tue Mar 23, 2010 10:46 pm
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Joined: Sun Oct 04, 2009 10:18 am
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Location: Washington State
Post Laraine, thanks for your posting
I have been working with some wonderful doctors and nurses who have questioned why my LO is on certain medications and procedures. As the decision-maker, I have to keep in mind the bottom line...what would she want? When she falls and is hurting, does she need to go to the hospital or can her pain be treated in place? It seems like it is easy to treat the crisis...after all, it is an emergency. But in the long run, is it what your LO wants to do? It is a matter of personal strength. Listening to your LO and following their wishes. Not the wishes of those who want to take the easy way out. Thank you for your perspective and for sharing your strength.


Tue Mar 23, 2010 11:01 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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When my dad had to go to the ER this week because he fell out of his wheelchair and hit his head, I was wondering why they sent him to the ER. The ALF said it was their policy if someone hits their head. So, with his advanced directive, I am wondering what would have happened had he had a brain bleed? I asked them to please make sure all his documents went with him to the ER from the ALF. I guess I don't understand if he has an advanced directive why they insisted on calling the paramedics. The ALF knows he does not want interventions, so what good does it do to send him to the ER? Is this just to avoid a potential law suit of the family or what? It seems like an expensive way for them to CYA.


Wed Mar 24, 2010 7:30 pm
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Joined: Sun Oct 04, 2009 10:18 am
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Location: Washington State
Post Advanced Directive
Lynn, this must differ from ALF to ALF. I know of several occasions where the paramedics were called when someone hit their head and the patient was not sent to the ER. Perhaps the ALF is not visited by paramedics first to do a patient evaluation? I think it is a good discussion to have with the ALF managers. Also, you might check your Resident Agreement paperwork for an explanation of their policy. If you don't have a copy I bet you could get one if you asked.

On the advanced directive issue, we have a copy of my LO's advanced directives and a copy of my DPOA document in the hospital files. I know they are checked periodically when we go to the ER.


Wed Mar 24, 2010 8:38 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Thanks Annie. I'll check up on this when I get back to MD. One of the many things on my to do list.....


Wed Mar 24, 2010 8:51 pm
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