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 DNR Status 
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Joined: Thu Jul 12, 2012 6:41 pm
Posts: 1
Post DNR Status
Mom was diagnosed with Alzheimer's in 2010 after an acute paranoid delusional episode. As a nurse with LTC excperience, I doubted this diagnosis due to the sudden onset on symptoms. She was placed on Namenda and Aricept at that time. Three neurologists and 10 months later we finally received a diagnosis that made sense - LBD. She improved dramatically after starting on Sinemet and Seroquel but unfortunately that "honeymoon" only lasted about 6 months. Most days Mom is moderately confused with an underlying tone of agitation and anger. Daily paranoia, delusions and hallucinations worsen as the day progresses. Unfortunately, they are not of the calm, serene variety. People are stealing her possessions, she's being held hostage, she's lost the baby (a stuffed teddy bear), she can't find her husband (deceased 4 years ago) and her family is missing. Her mild Parkinson's symptoms are well controlled with a low Sinemet dose. She naps most of the day, usually sleeps at night but does have episodes when she's up all night. She has daily pain due to nerve damage from frequent falls. Pain medication only worsens her hallucinations and seemed to worsen her condition overall. In general, she does not have a very good quality of life. LBD is a progressive disease, fatal due to other causes. If Mom had cancer, heart disease or some other incurable illness, I would have no issues requesting a DNR order from her MD but I'm struggling with this because some days are still somewhat OK. I know her condition will only deteriorate. I do not want her to reach the point where she cannot communicate with the family, where there is no quality of life. As her medical POA, this decision falls on my shoulders. Where do you draw the line regarding what to treat and not treat? I only want what's best for her. I know many of you have struggled with this issue. Please offer me your thoughts and guidance. Thank you.

Mon Jul 16, 2012 9:00 pm

Joined: Sat Oct 06, 2007 4:28 pm
Posts: 781
Location: LA
Post Re: DNR Status
This may or may not make sense to you but with my husband, I clung to the DNR as something I would use when the time came. I did not want to relinquish it to anyone else. As the illness moved on, I would be asked the question and I knew it was not time, however, when the time came and it was pneumonia, I asked for and signed the papers. It was the right thing to do. What I'm saying is, you cannot take the exam until you have the questions on your desk. You will know when the time comes. I still allowed the antibiotic and the breathing treatments but he slipped gently into a coma like state and stopped breathing. No one bothered him or tried to rouse him, he just went to sleep.

"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.

Mon Jul 16, 2012 10:03 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: DNR Status
My husband's orders currently are: DNR; no feeding tube; yes to antibiotics, hospitalizations and other interventions unless there is no likelihood of recovery. If his condition worsens significantly, I shall change it to 'comfort care only'.

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.

Mon Jul 16, 2012 10:36 pm

Joined: Fri Mar 30, 2012 7:29 pm
Posts: 10
Post Re: DNR Status

This is a very important and difficult decision, and you are right, planning is key. When we were discussing the option of a DNR, we reached out to my uncle's physician for advice. He was able to help explain to my uncle what a DNR was at a point in time when my uncle was lucid enough to understand, and helped to counsel us on when/if to put a DNR in effect. This added assistance from a medical professional helped to guide us. You may find additional information/advice by visiting the Living with LBD section of this forum, either in practical caregiving tips discussion group, or in the financial, legal and social services discussion groups. Take care of yourself. We will be thinking about you.


Kathleen B.
LBDA Forum - Welcome Moderator Volunteer

Mon Jul 16, 2012 10:50 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: DNR Status
Welcome, and sorry for your need to be here. It sounds like your LO has not made an AD or a DNR, but did she ever express her feelings verbally about such situations when she was of sound mind? If so, you already have some clues as to what her wishes would be in this circumstance. If not, I'd do some more data gathering and reading about "death with dignity" articles, talking with health care providers, as well as discussing the issues with close family friends or relatives.
After my dad's big decline, his quality of life was SO poor, and continued to decline so much (just when we thought it couldn't get any worse it did), we all wished that the end would come sooner than it did. For many of us, those last months (or even a year or two) was pure torture watching our LOs go through what they did. My family and I, and close friends of my dad would not have done anything to extend his suffering, which was great.
However, there are those who have totally different philosophies about end of life issues. Hopefully, we are all doing what we know our LO would have wanted and make the best choice we can with the data we have. Good luck and I hope you come back here often. 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 Jul 17, 2012 10:01 am

Joined: Wed Aug 06, 2008 2:24 pm
Posts: 40
Post Re: DNR Status
This is such a difficult decision for any family, regardless of the illness involved.

A disclaimer before I share my own experience... As one who has made these decisions for both of my parents, my comments here reflect my personal experience and opinions. LBDA does not take any stances on end of life decisions, as that must be done with careful consideration by the family and in consultation with the physician.

In the case of both of my parents, I had to weigh a number of factors in making the decision to provide or withhold treatment, including the doctors' prognosis, the wishes of my parent, the wishes of my siblings and my parents' siblings, my own emotional desires, and common sense. Truthfully, it was rare to find agreement among all of the above.

In my father's case with LBD, we placed him on hospice when he was losing the ability to bear weight on his legs and feeding himself became more difficult. I continued to have him receive medical care in anything that would provide comfort or was not caused by LBD, such as a urinary tract infection. Pain management was started by hospice to treat arthritic back pain and he actually improved cognitively quite a bit just from that and was being considered for release from hospice care.

But then he contracted the flu when it swept through the memory care residence and within 48 hours he had become unresponsive with a high fever. On day 3, I asked if we could administer fluids for hydration or nourishment. Hospice explained that his body was showing early signs of shutting down and he likely would not be able to process the fluids. That was enormously difficult to hear, because he was doing well only a week before. But that's all relative because he was still on hospice with advanced LBD... So I realized we had come to THE crossroad. I could request fluids and hope it did not make things worse, or we could trust in the wisdom of nature.

In thinking about the despair he sometimes expressed about living with LBD and knowing that any remaining shreds of quality of life and dignity were far too quickly slipping through our fingers, I decided it was time to surrender to reality. Because of his advancing LBD, he simply may not be strong enough to fight the flu. The family gathered, we said our goodbyes and a few days later he was released from his burdens.

It's been 18 months and I am at peace with the decision. I miss him every day, but in my mind and heart he is restored to health, dignity and freedom from LBD.


Angela Taylor
Director of Programs
Lewy Body Dementia Association

Sat Aug 04, 2012 9:28 am
Profile WWW

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: DNR Status
Thank you for bringing your story here as it really shows how quickly things can change, people that have suffered LBD for sometime are so compromised that when an illness does strike they really can't fight it and we have to come to that crossroads with decisions and planning ahead really does save so much family grief !

Irene Selak

Sat Aug 04, 2012 2:39 pm
Profile WWW
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