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 Anyone else here in western Washington? 
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Joined: Wed Aug 24, 2011 12:05 pm
Posts: 7
Location: Washington State
Post Anyone else here in western Washington?
Being somewhat new to this journey with my father, diagnosed with Lewy Body dementia and my mother with Alzheimer's, I am trying to figure it all out. Any info on excellent doctors or resources in the area would be appreciated. They currently live in the Seattle area but I am hoping to move them north to be near me soon. Thanks!
Beth

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[color=#004000]Washington state. Daughter to an 84 year old man diagnosed with LBD in July 2011. I also have a mother, 83 years old, diagnosed with Alzheimer's disease June 2010. They both live with me now. We have a staff of caregivers to make it work.


Wed Oct 12, 2011 11:10 pm
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: Anyone else here in western Washington?
Beth, I'm in Western WA. I just sent you a PM. Before your Dad leaves Seattle, if he is a veteran I highly recommend Dr. Leverenz at the VA in Seattle. He was so helpful to us when I could transport my Mom to Seattle. He's an expert on LBD. If you are interested, you can hear an interview with him on the LBDA website homepage. Annie

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


Thu Oct 13, 2011 10:08 am
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Joined: Wed Mar 16, 2011 11:41 pm
Posts: 8
Post Re: Anyone else here in western Washington?
I live in Puyallup area and my dad lives with my mom in the Mt. Vernon area and he is 82. He has Lewy. I don't have any resources but sure would like to talk to someone going through the same things. And would love to hear what you learn.


Sat Oct 15, 2011 1:05 am
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Joined: Sun Aug 25, 2013 9:15 pm
Posts: 8
Post Re: Anyone else here in western Washington?
I live in Forks. I see that this forum isn't very active. But if someone wants to share info, I'd be happy to share what little I know. My mother has been not quite right for several years now. We attributed it to vascular damage from strokes. Six years ago she started having delusions which we attributed to hydrocodone after breast cancer surgery and also oxybutynin for bladder urgency. The delusions went away when those drugs were stopped. But 3 years ago she started having delusions for which we couldn't ascribe a cause. Since November 2012 she has really become delusional. A UTI was thought to be the cause...she "cleared" with antibiotics. In August, We took her to see neurologist, Dr. Ro, from Swedish Hospital, at the Swedish Clinic in Sequim. We had to wait 4 months for an appointment to see ANY neurologist here on the Peninsula. Dr. Ro is excellent. Her specialty is movement disorders. She diagnosed probable LBD and also spotted the Parkinsons symptoms Mom developed this year. Mom has really deteriorated mentally in the last 3 months. Three weeks ago she stopped feeding herself. She eats maybe 300 calories a day with a great deal of encouragement. Her delusions are now a daily event. Aricept was started by Dr. Ro, and either it is just a phase of DLB or the effect of Aricept we won't know, but Mom fearful delusions and hallucinations stopped. Now she just thinks she has been on a trip to China last week, and she also talked to President Obama (must have been prompted by news programs she saw on TV, is my guess). Stroke damage was so severe physically that she became a 2-person transfer 2 years ago and is now in our nursing home here in town. However, the Lewy Body damage has made her almost paralyzed as of a month ago. Hope someone out there would like to share coping ideas.


Mon Nov 04, 2013 7:24 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Anyone else here in western Washington?
We are in Centralia. My husband is currently in the hospital and we are admitting him to Hospice and I'm taking him home instead of back to the SNF. I prayed, my children prayed, that the right decision would be reached. Today the doctor confirmed the decision and signed the orders. My husband should be discharged on Wednesday so I have a lot to do between now and then---getting the bed delivered, bringing all his stuff from the SNF, stocking up on food, etc. and sheets.

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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.


Mon Nov 04, 2013 8:00 pm
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Joined: Sun Aug 25, 2013 9:15 pm
Posts: 8
Post Re: Anyone else here in western Washington?
Hi Mockturtle,
After you get a little bit settled later this week, maybe you would share with me how hospice was justified by Medicare. I know there are certain hoops to jump through.
I am so sorry as I know you will be struggling this week.
Judy, in Forks


Mon Nov 04, 2013 8:39 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Anyone else here in western Washington?
I didn't have any hoops to jump through. My husband isn't eating or even drinking. The doctor discontinued his IVs today. He has lost 27 lbs. since January and is almost never awake. To be honest, it was the charge nurse who first suggested that he is in 'end stage Parkinsons' and that she has seen it before and that I might consider Hospice either at home or at the SNF. It hit me hard at first but I realize they are right and that it's not fair to him to keep trying to correct his electrolyte balance, etc. I still keep trying to feed him. They had an NG tube in at first [not for feeding but for medications and decompression] but he pulled it out and I said 'no more!'.

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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.


Mon Nov 04, 2013 8:57 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: Anyone else here in western Washington?
PPS - this part of the forum is mainly for connecting with others near you. Specific questions, concerns, advice, etc. can be found under the appropriate topics in the other parts of this forum, so you won't see detailed postings here. You'll get more responses if you put your comments in the topic areas, like for meds, behavior issues, etc. 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.


Mon Nov 04, 2013 10:59 pm
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Joined: Sun Aug 25, 2013 9:15 pm
Posts: 8
Post Re: Anyone else here in western Washington?
Thanks Lynn.


Tue Nov 05, 2013 2:05 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 746
Location: LA
Post Re: Anyone else here in western Washington?
Pat, just a line to let you know I am thinking of you as you continue this caregiving path you are on. You and your husband are in my prayers tonight. Dorthea

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"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Thu Nov 07, 2013 3:02 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Anyone else here in western Washington?
Thank you so much, Dorthea.

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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 Nov 07, 2013 11:41 am
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Joined: Mon Oct 01, 2012 11:24 pm
Posts: 15
Post Re: Anyone else here in western Washington?
Pat, please know that the LBDA staff is always thinking and praying for our volunteers and their spouses. Recently, there has been a lot of loss in the LBDA volunteer community. I wish you peace and blessings during this time.

Toy

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LaToysa Scaife-Rooks, MPH
Lewy Body Dementia Association (LBDA)
Volunteer and Program Coordinator


Fri Nov 08, 2013 5:13 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Anyone else here in western Washington?
Thank you, Toy!

_________________
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 Nov 08, 2013 5:38 pm
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