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 Emergency Room and avoiding hospitals 
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Emergency Room and avoiding hospitals
Kate, that decision to call 911 or not is a real panic generator, isn't it? At the time you have to make a call you really don't know the outcome or often the cause of the distress. I've done it twice and have no regrets. Coy is still in early stage and has a reasonable quality of life. The calls were for a bleeding ulcer and pneumonia. He recovered from both and continues to bowl once a week and golf in the summer and enjoy many activities. If he had failed to recover to his baseline and all hospitalization achieved is to prolong life without quality, I probably would regret the call. But all any of us can do is the best we can with what we know at the time. I hope that I will be strong enough to let him go if he appears to be having a heart attack--that is really how he wants to go. And once his quality of life has deteriorated I might make other decisions about treatment. For now, I think I'll seek treatment for all emergencies except a heart attack.

Boy, who ever signed up to make these heart wrenching decisions? It all comes with the job we never applied for.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Wed Feb 23, 2011 3:42 pm
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: Emergency Room and avoiding hospitals
There's also a family concern here when deciding to go to the ER - siblings may have different ideas about when to seek help for a LO. True, the decision legally rests with the POA, who is hopefully the primary caregiver. But if the primary caregiver, based on her interaction with the LO and the medical directive, decides not to pursue antibiotics for pneumonia or care for a stroke (for example) and the LO dies, it could sever a family relationship. This could be heart wrenching as well.

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Annie, daughter of brave Marie, dx 2007 and in ALF


Thu Feb 24, 2011 11:11 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Emergency Room and avoiding hospitals
How true, Annie. We had a family conference several months after Coy was diagnosed, and discussed these things. I've been thinking it is about time for another one. Coy is still in early stage but I know that could change almost overnight and I want all of our kids to have some education. Since I am so much younger than Coy and in relatively good health, the decisions are apt to be mine to make, so I hope that will eliminate conflicts among the kids. But I'd kinda like them all to be speaking to me when this is all over! 8)

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Feb 24, 2011 12:22 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: Emergency Room and avoiding hospitals
Is not calling 911 really a good idea? You don't know what the problem is and how can you watch as your LO strangles, or moans, or thrashes around. Perhaps you can intervene upon arrival with the advanced directives. If he/she is going out, perhaps he/she needs pain meds.


Thu Feb 24, 2011 3:07 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Emergency Room and avoiding hospitals
Absolutely, Gail. I think people are referring to cardio/respiratory failure, etc., where CPR might be done on them. Obviously, if our LO breaks a leg or is injured in some way or even has a stroke, early treatment is essential. There are other conditions, like pneumonia, septic shock or unconsciousness from massive stroke where one might choose not to treat them. It helps to decide these things beforehand. If my husband were choking on a piece of meat, I would certainly perform a Heimlich maneuver!

Just a couple of months ago when Derek clearly had a bad UTI, the new doctor said he thought our old doctor and we had decided not to treat UTIs. Well, that was not true. His former doctor had suggested his UTIs not be treated unless he was symptomatic which, in this case, he clearly was and which I and the nurses at the SNF had documented and faxed him. Because he is becoming more resistant to the usual antibiotics we have to pick our battles [and our weapons] carefully. Thankfully, it was successfully treated after much haranguing on my part.

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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 Feb 24, 2011 5:10 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Emergency Room and avoiding hospitals
Well said, Pat. One of the good things about being in Palliative Care is that I have a phone number I can call for any reason. I would use that number rather than 911. They have all the facts. 911 does not.

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


Thu Feb 24, 2011 5:34 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Emergency Room and avoiding hospitals
Pat, that is how I look at it, too. No CPR, please, but many other conditions would be treated. About 10 years before Lewy, neighbors performed CPR on Coy. We are grateful they did! But when the city fathers had a little ceremony honoring our neighbors for their life-saving act they mentioned that this was the first time the recipient of the act had been at the ceremony! I don't think the success rate of CPR is all that great. I'm glad Coy had another chance and I'm glad it worked for him, at that time and in those circumstances. He does not want another chance now. He feels so strongly about it that he had his defibrolator removed.

The problem is, in Minnesota First Responders are required to attempt resusitation unless they are handed a doctor's DNR order as they walk in the door. I understand that some ambulance companies may attempt it even if given the form. So, call 911 and tell them to make him comfortable but DNR'DNI? I just don't know. Could I actually keep myself from calling 911? I don't know that, either.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Feb 24, 2011 10:08 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Emergency Room and avoiding hospitals
We kept the DNR order in the refrigerator [really!] at the request of the home health agency. Apparently that is protocol. So it was kept in a gallon-sized zip-lock freezer bag. Now, of course, it is at the SNF. Yes, if called, the paramedics must perform CPR if indicated unless shown a physician-signed DNR order.

I also have DNR orders for myself. I am glad Coy's resuscitation worked out well but most efforts on elderly people lead to the ICU and life support, leading to more decisions. :|

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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 Feb 24, 2011 10:20 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Emergency Room and avoiding hospitals
Coy was 66 at the time. (Oo... that is my age next month. Would I want to be resusitated? Hmmm ... that is a hard one. I'd want to be restored to my present functioning, but as you say, that is not the usual outcome.) I can fully support Coy's decision. I'm not sure I am there for myself yet.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Feb 24, 2011 11:25 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Emergency Room and avoiding hospitals
Pat, When Frank was in rehab, his Dr. signed the DNR, but that copy is at the NH. The copy I have on the fridge is not signed by his Dr, should I have that done and could I make "copies" to take if he were to end up in the hospital.

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Fri Feb 25, 2011 6:17 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Emergency Room and avoiding hospitals
Also in Minnesota and it is even harder than Jeanne noted. The only way to keep paramedics here from going into life-saving-at-all-costs mode is to actually file a form with the county - DNR, DNI, DNH. When I called 911 for Mom once, they told me that they can't act on a medical directive. It has to be the county form. I guess there's some logic to this, as they have to act quickly and, if it is in the county records, they can be aware of it before they even walk in the door.

Last ER visit, Mom turned out to be close to a diabetic coma, though all I was aware of was excessive weakness and tiredness. How nice it would have been to let her go that way. But I took her to the ER. Emergency rooms, at least in Minnesota, don't recognize medical directives. It has been explained to me that, by simply going to the ER, we've made an implicit request to prolong life. So they do everything to stabilize a patient, and the family ends up with even more agonizing decisions.

Here, it's all in filing forms - and the right forms with the right agency! And few people find out about the forms until they've already been through a crisis or two. Even at the SNF, the doctor made sure we were aware of, and signed, all official forms just in order to have Mom's medical directive honored.

I'd worried about the family thing, too. But I finally just took a chance and talked with each family member about what Mom had put in her directive. I'm lucky in that my siblings are satisfied to honor Mom's choices.

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]


Fri Feb 25, 2011 2:36 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Emergency Room and avoiding hospitals
katelu wrote:
Emergency rooms, at least in Minnesota, don't recognize medical directives. It has been explained to me that, by simply going to the ER, we've made an implicit request to prolong life. So they do everything to stabilize a patient, and the family ends up with even more agonizing decisions.

I do understand that logic, but ... what are the alternatives to 911? There is no emergency number to get on hospice. :oops: I thought the directive was an explicit (which should override implicit) statement to the effect "If I am dying I do not want these measures to be used. I do want to be kept comfortable." So where to you take a possibly-but-not-for-sure dying person to get that comfort care, in an emergency?

Perhaps the ER, whose true mission is to save life, is not the appropriate place to bring a person with a DNR/DNI/DNH order. But what is? I know that many people without insurance put off routine care or office visits until they cannot ignore the (serious but not life-threatening) problem and then go to the emergency room. That isn't an appropriate use, either, but what are their alternatives?

Kate, thanks for that information about filing with the county -- another little detail the Elder lawyer failed to mention.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri Feb 25, 2011 4:49 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: Emergency Room and avoiding hospitals
Each person's situation needs to be looked at independently, and there is no "one size fits all" answer to this. My dad was in his late 80's, had made his wants known for years (DNR, AD, etc.), was failing terribly, had Stage 3 kidney disease (which I found out the same day I found out he had dementia), had had 1 minor stroke, had been on BP and cholesterol meds for years. When he moved to the ALF we told them NO ER unless he had a broken bone. We would not have wanted him to suffer with an untreated break from falling out of his wheelchair or bed, but if he was having a stroke, heart attack, etc. they were to let nature take its course. That's what he wanted and that's what we were trying to respect. We made it very clear, discussed various possible scenarios until everyone was on the same page about it.
If he were much younger, physcially healthy and had a high quality of life we may have had a different philosophy about it. There are a lot of factors to consider, and what's right for one may not be right for another person or family. Lynn

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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.


Sun Feb 27, 2011 2:26 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Emergency Room and avoiding hospitals
If our elderlaw attorney mentioned the county forms, I never heard it. And he was so good about having all other paperwork ready, I'm sure he would have had that as well if it had been on his radar.

I am so happy (mostly) with Mom's SNF and, especially, with her new doctor (associated with the SNF). Mom is on palliative care and only takes meds for pain and her Seroquel. And the doctor agrees with us that, if Mom refuses meds, they shouldn't be pushed on her. The doc said clearly to us when we first met that it is his job to help us when it comes to decisions like these. He was clear to us that his team would step in and help us with the emotional part of honoring Mom's directive.

I'd say that, in addition to checking with the county about what forms to fill out, checking with a palliative care or hospice doctor about what to do might help.

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]


Wed Mar 09, 2011 9:02 am
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Joined: Wed Mar 09, 2011 12:22 am
Posts: 75
Post Re: Emergency Room and avoiding hospitals
Every time we have gone to the ER, we end up in the psych ward. Once they rule out any "real" medical emergency and know it is dementia, they put us in a room with no knobs on the doors and we hardly see anyone again! it takes HOURS to be seen for anything....unless you have a bone protruding from the skin! They have treated us like they were dealing with insanity. BTW, insanity should be treated better!
~~Debra

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~~Debra, 52, wife to Chris, 64 DX Vascular Dementia 9/10; Alz 10 or 11/2010; Pseudo Dementia 01/11; LBD in 03/11..Was at home until 4/29, 2011, now in a Alz fac./dementia unit.
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Thu Mar 10, 2011 3:02 pm
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