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 Prayers needed 
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Joined: Wed Feb 10, 2010 1:26 pm
Posts: 56
Location: NC
Post Prayers needed
Hi all'

Tom had been doing great!! I even took him out of the ALF on Monday for a trip to the beach!! Unfortunately, after dinner on Mon (only about 10 min after my leaving) Tom suffered a bad fall.

He was taken to the hosp, and stayed for two days. There were no major injuries, but his ability to walk was greatly affected so they kept him for observation and PT.

He was released on Wed afternoon. Still unable to walk without assistance but cognitively doing well. By Monday evening he began speaking in jibberish rhyme. I could tell in his eyes that he was trying to convey something but it wasn't coming out correctly. He continued with this all evening. Thursday morning he was totally dependent with transfers, not eating much, had to be fed, and didn't speak above a mutter. He was frequently whispering to the unknown. This behavior has continued.

Hospice came for evaluation and admission today. I knew all of this was coming but it's much sooner than I ever imagined.

Tonight, he was more responsive to me. He told me he missed talking to me, and he loved me. He said he was going to be ok.

I am most worried about our teenage daughter. This has really overwhelmed her!! She can't stand seeing him this way and doesn't understand "how he can be this way for very long" It's impossible to make a teenager understand something that I don't...

Please say a prayer for all of us. I know everyone here has been there before. :cry:

Sandilee


Sat Sep 18, 2010 11:57 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Prayers needed
You will all be in my prayers, Sandilee! God bless you!

_________________
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.


Sun Sep 19, 2010 12:33 am
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Prayers needed
Will pray for peace for all of you. Please feel enfolded in the arms of all of us who walk with you on this path. Nan


Sun Sep 19, 2010 12:45 am
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 718
Location: LA
Post Re: Prayers needed
Sandilee, may you find comfort and understanding as you tend to your loved one and also try to help your daughter. Please know that you and your little family are in our prayers. Not only those of us who write but many others on this forum, draw strength from this care to help you through the days ahead. May God bless you and give you peace. dorthea


Sun Sep 19, 2010 2:16 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Prayers needed
Sandilee, I agree, "we" don't understand this horrible disease and the sudden changes are so difficult. My thoughts and prayers are with the 3 of you.
Fondly, Gerry

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


Sun Sep 19, 2010 6:44 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Prayers needed
Sandilee,
I am so sorry this has all happened and sometimes it is just the way it is with a person with LBD, I do Pray he comes back some and doesn't continue on this spiral,

Having gone through this end of LBD with a teenanger at home, I do understand how hard it can be for you but teenagers deal with things differently than we do and she'll be OK, it takes time! I used to think my son was selfish and uncaring but it really was his age at the time with dealing with these same exact issues! Be patient with her , our hospice Head nurse told me at the time the best tihing I could have done was include my son in his Dad's care and all these yrs later I see that is was the best thing

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Irene Selak


Sun Sep 19, 2010 8:59 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Prayers needed
Irene, I think you are absolutely right. Teens need to feel involved.

_________________
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.


Sun Sep 19, 2010 10:01 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Prayers needed
Pat,
At the time I didn't give it much thought as I had so much on my already full plate until this nurse spoke to me and all these yrs later my son is living proof of it !

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Irene Selak


Sun Sep 19, 2010 10:47 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3314
Location: Vermont
Post Re: Prayers needed
Sandilee - my thoughts are with you doing this rough time. Painful as it is for children and teens to see a parent suffering with an irreversible condition, I think they become very compassionate adults. Hang in there, and visit the forum often for support. 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.


Sun Sep 19, 2010 10:57 am
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Prayers needed
Sandilee,
My prayers are with you and your daughter. I can only imagine how you feel as a mom trying to shield your daughter yet help her understand. My daughter is 26 and I feel she is way too young to be experiencing this with her dad. Please keep us informed of any progress/changes. Hugs to you, Sher

_________________
Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Sun Sep 19, 2010 11:33 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Prayers needed
What a wonderful gift you received from your husband. So few caregivers hear these words of love and affection.

I hope the hospice admission process is going along well.


Mon Sep 20, 2010 11:45 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 343
Post Re: Prayers needed
Sandilee, I am praying for you and for your family. Take care and know that God sees you and will provide what you need to get through this.
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Tue Sep 28, 2010 10:12 pm
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Joined: Wed Feb 10, 2010 1:26 pm
Posts: 56
Location: NC
Post Re: Prayers needed
Hey all,
Just an update... :cry:
We have taken a turn for the worse. Never really improved much after the fall. Basically immobile from that point on. Unfortunately, he had another fall 10 days after the first. (This time out of bed~on the day the hosp bed was to arrive). This only exacerbated all issues further still.
This past Wednesday, he was very clear, spoke to a friend for about an hour(more clear than not), ate more than he has in 2 weeks, and wanted to sit in his recliner to watch baseball. Once he went to bed, he has not been responsive since. He is still producing urine, totally unresponsive, Bp has begun to drop.

I am a nurse so I apologize for sounding so clinical. Anyway, he will be moved to the Hospice care center as soon as abed is available. I have arranged for brain donation.

All prayers are appreciated and any advice would be great. My heart has been breaking for so long that I'm almost numb at this point...

Thanks for all of your support :cry:


Fri Oct 01, 2010 11:08 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Prayers needed
Oh, Sandilee! How awful! Talking quite normally and then unresponsive! What a shock! You and he are definitely in my prayers. God bless you both!

_________________
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 Oct 01, 2010 11:28 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Prayers needed
Sandilee, I'll keep both of you in my thoughts and prayers. I know what you mean about being numb, you just go on daily or hourly accepting all the changes, good or bad, waiting for the next "new normal". I hope a bed is available soon, it will give you both peace of mind, Hospice is a wonderful organization. Take care of yourself. Gerry

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


Sat Oct 02, 2010 5:46 am
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