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 Is there a place to post deaths? 
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Joined: Wed Jun 09, 2010 4:53 pm
Posts: 42
Location: Davis, CA
Post Is there a place to post deaths?
My dad passed recently and I haven't been able to find a place on the forum to post about it. Perhaps that could be rectified? Or even an end of life subject category? Seem to be a lot of both interspersed in the forums. I would like to write more detail and thank the association for its help.


Thu Jul 15, 2010 1:28 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Is there a place to post deaths?
Amanda,

I'm so sorry to read about your father.

You are right -- info about deaths is posted in a variety of areas on the forum.

Robin


Thu Jul 15, 2010 2:02 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3178
Location: WA
Post Re: Is there a place to post deaths?
Amanda, I'm so sorry to hear of your father's death! When you are feeling up to it, I, for one, would like you to briefly share the course of his illness and the circumstances of his death, medications, etc. In your other posts you had shared that he might be started on an antidepressant. Was this done? What other medications was he on? Did he ever start sleeping soundly? I'm asking because my husband seems to get very little sleep and I believe it is contributing to his decline. Sorry to be so prying in your time of grief but information is valuable to me. Thank you and may God bless you and your family.

_________________
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 Jul 15, 2010 2:12 pm
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Joined: Wed Jun 09, 2010 4:53 pm
Posts: 42
Location: Davis, CA
Post Re: Is there a place to post deaths?
I will post my dad's story here. He died Tuesday. He was 91.

Dad always had sleep disorders, since he was a kid. He had night terrors as a child, walked in his sleep, and the night terrors escalated after he served in World War II. Dad also had heart disease, and about 12 years ago, had bypass surgery. I think that's when LBD started. The general anesthesia for his bypass surgery led to very vivid hallucinations that seemed to abate fairly quickly. Then, within a year, he had another surgery with general anesthesia for a blocked carotid artery. The hallucinations returned, but again abated. About 5 years ago, he had a hip replacement and even though he had an epidural, hallucinated wildly throughout his recovery. We were never sure if it was the anesthesia or other medications that set off the hallucinations, but we knew he was incredibly sensitive to any kind of pain medication. When I look back on it, it seems odd that we never considered this to be a sign of dementia. We really had no idea.

After the hip surgery, I don't think he ever stopped hallucinating. He began a cognitive decline as well, but my mother covered for him and dad was good at show time for short periods. Prior to the last series of events, I visited in November after a hospitalization that we thought was heart-related and noticed what I now recognize as Parkinsons symptoms. The mask-like face, the odd gait. I was very worried about him, as was my brother, but mom wouldn't talk. Turns out that he hallucinated nearly every day, but didn't even say much to my mother because it bothered her to hear about the apartment being full of people or the puppy that followed him around. Mom confessed that, for the last two years, she helped bathe and dress him. Yet, she never talked to us or their doctor about any of this because she was always with dad. I don't blame her for anything, by the way. They had a fiercely romantic relationship and she wanted to protect him and their ability to be together.

Two bad falls in the last two months led to more hospitalizations and time spent in ICUs. The hallucinations became very serious and he became less and less coherent. We realized that he had very serious dementia but weren't sure what kind he had. When he was placed in a nursing home, he declined further, and we had people from memory care facilities come out to assess him. All agreed he had LBD. Later, a neurologist confirmed that, but did not prescribe anything for dad, saying his primary doctor should be the one to prescribe. I found this extremely frustrating. Dad was never given any dementia drugs, mostly because by the time he landed in the nursing home, and we realized how serious the dementia was, we were all frantically trying to figure out what to do: my sister and I from a distance and brother and mom nearby. He was on Trazadone for a matter of days for depression. When it seemed to agitate him, we took him off and put him on Zoloft. His weeping made an antidepressant seem like a necessity. I would have liked it if we had tried a dementia drug as well, but that was not to be, and I think his disease and overall health almost made it too late. That and our ignorance of the seriousness of the dementia.

In the nursing home, he complained of chest pains and asked to be hospitalized a couple of times. He had bad acid reflux which I thought might be causing the chest pains. Turns out that at the last hospitalization, which was a week ago, they took x-rays of his chest and sides and discovered a ruptured ulcer. Abdominal surgery was out of the question, and we moved him from the nursing home to my parents' apartment to die. He lasted five days and we all said our goodbyes to him with the help of hospice. He could not speak but obviously heard us. Without food or water, it seemed extraordinary that he lasted so long. I know he didn't want to leave mom, but he eventually found his path. We were gathered around when he drew his last breath. It was peaceful, beautiful and moving.

This website, and the people who post in its forum, have meant so much to me. You cannot imagine the support and help I've received here, or perhaps you can. I will continue to read and post. Thank you all so much for bringing this disease into the public eye and offering information and support for those of us who have a loved one afflicted with LBD.


Thu Jul 15, 2010 5:19 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Is there a place to post deaths?
Amanda,
So glad to hear that your father's passing was so peaceful and pain-free. You and your family will be in my thoughts.
Robin


Thu Jul 15, 2010 6:50 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3123
Location: Vermont
Post Re: Is there a place to post deaths?
Hi Amanda -my thoughts are with you. It is sad when we lose a parent, but it is also a release from a terrible disease, and I hope that knowing he is no longer suffering gives you some degree of comfort. Thanks so much for sharing your story. Take care, 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 Jul 15, 2010 7:28 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Is there a place to post deaths?
Amanda, Such a difficult time for you and your family, especially for your Mom. It sounds like a true love story, she will have such a void in her life. Thank you for letting us know your dad's story.
Take Care, Gerry

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


Thu Jul 15, 2010 9:47 pm
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Joined: Thu Jan 28, 2010 4:42 pm
Posts: 59
Location: Florida
Post Re: Is there a place to post deaths?
Amanda, I'm sorry for your loss of your father. Sounds like he and your mom had a wonderful marriage and I know she will miss him terribly. Thanks for sharing this part of his life with us. May God bless you with His peace.


Thu Jul 15, 2010 11:28 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3178
Location: WA
Post Re: Is there a place to post deaths?
Thank you for your thoughtful and moving post, Amanda! I'm glad it's over for all of you but I know his passing will leave a void that will never be filled. God bless and keep you! --Pat
PS: I also nursed my father at home through his death from cancer and he also lasted almost a week without food or water--the human body is an amazing creation! He died with his family around him just as he wanted, just as your father did.

_________________
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 Jul 16, 2010 12:28 am
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