View unanswered posts | View active topics It is currently Fri Oct 31, 2014 9:05 am



Reply to topic  [ 47 posts ]  Go to page Previous  1, 2, 3, 4  Next
 The Need for Social Support 
Author Message

Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: The Need for Social Support
I'll second that, Dianne. I've kept my journal in the computer since Dale began the awful night time hallucinations and delusions that kept us up for hours at a time early in 2009. It's helpful to remember what we've experienced, what medicines we've tried, and some of the strange things he has said. When we have a particularly bad day, I often read my former postings just to remind myself that this has happened before. I think it helps to keep me sane. :roll: Maybe....

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


Sat Nov 13, 2010 7:33 am
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: The Need for Social Support
I also keep a journal on the computer. I wish I were more faithful with it but I usually enter my notes at night before I go to bed and I'm exhausted. Still, as you point out, Leone, it's a good record-keeping device, if not a literary success.

_________________
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.


Sat Nov 13, 2010 10:14 am
Profile

Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: The Need for Social Support
I type my journal each night and at the end of the month I print it, I've had a virus a couple times so was pleased I had a hard copy. I check the computer just before I go to bed and type it then.

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


Sat Nov 13, 2010 10:29 am
Profile

Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: The Need for Social Support
Isn't it amazing how the writing itself is somehow therapeutic?!
My daughter said to me today that it was a way to keep my own personhood and to take back some of my own life in the midst of this journey.
I suspect that this disease can swallow you if you let it.
Dianne...just reading that "this is doable" felt like such a relief! Thank you.

_________________
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]


Sun Nov 14, 2010 12:20 am
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: The Need for Social Support
Pat - you are so right. This disease can swallow you! There are so many times I have to remind myself that I need to not get bogged down in frustration and depression over my dad's health. When you watch your LO going downhill in a helpless, hopeless situation it can be really hard to keep yourself healthy and sane! 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.


Sun Nov 14, 2010 12:27 am
Profile

Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: The Need for Social Support
Lynn, I just read your posts in another part of the forum about what went on with the CPN and psychiatrist who were (not) taking care of your dad.
What a nightmare!!!
The last post was in Sept or Oct. What finally happened? Is your dad still there? Is his care better? Are you feeling better now?
I am really concerned.
PatS

_________________
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]


Thu Nov 18, 2010 12:45 am
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: The Need for Social Support
I fired the psychiatrist, tried to fire/change his primary care from the CNPs he's had, but there is NO OTHER CHOICE where he is. I had to have someone who could come into the ALF to see him because he has not been mobile, in terms of taking him anywhere even in his wheelchair on the handicap bus since June. So, not only could I not get a new primary care person, but the CNP threatened to sue my sister and me if we tried to move him elsewhere or tried to get him off the meds that we thought were making him worse. After 8 months of pleading, the CNP finally took him off the Namenda, and he has been off the Aricept for a few weeks.
He is in end of life now and they think he only has maybe another month at most. He has an infected pressure sore that isn't responding to treatment, he's extremely weak, sleeping most of the time, speech is totally not understandable, eating a bite or two of food a day, etc.
Aren't you sorry you asked??? LOL He's in really bad shape and I just hope he doesn't have to continue suffering much longer. It's been a really bad 18 months for him. It would have been better for the family if we'd had health care professionals who treated us like part of the team instead of like the enemy. :cry: 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 Nov 18, 2010 9:06 pm
Profile

Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: The Need for Social Support - Lynn
I just hope my kids will step up to the plate as you have done when my time comes. Keep posting, Lynn. I care. We want - and need - to hear from you.

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


Thu Nov 18, 2010 11:58 pm
Profile

Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: The Need for Social Support
Lynn, my heart goes out to you and to your dad. I hope and pray that his suffering and yours will end one way or another very soon.
Hindsight is always better and you cannot second guess yourself. You have done what you could, when you could, to the best of your ability.
And I have a somewhat challenging sister, too, so I get that.
Please know that you are not alone. There are "sisters" out there who know and who care. Somehow there is comfort in that.
Hug to you,
PatS

_________________
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]


Fri Nov 19, 2010 12:04 am
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: The Need for Social Support
Thank you all so much for your support. I don't know what I'd do without my daily "fix" of all of you on the forum. I hate to miss being here any day, even when I am really busy.
I am heading back to MD a few days early because I just have an awful feeling he only has a few days left. His temp was over 101 this afternoon, so I'm going to try to get my kids there too, and hopefully in time to say goodbye. We are so spread out across the US it's hard!
Thanks again for all of your 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.


Fri Nov 19, 2010 1:28 am
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: The Need for Social Support
Lynn, do you know what his latest wound culture showed?

_________________
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 19, 2010 1:36 am
Profile

Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: The Need for Social Support
Lynn, I'm glad you are trusting your instincts on this one. Have a safe trip back to Maryland. You have a bunch of friends here who will be thinking good thoughts for you and your family. Annie

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


Fri Nov 19, 2010 10:47 am
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: The Need for Social Support
I don't know what types of bacteria are present at this point. I know they've tried several different antibiotics at this point. He is being given lots of pain drugs and being kept very comfortable.
Thank you for your kind words and thoughts everyone. 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.


Fri Nov 19, 2010 11:33 am
Profile

Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: The Need for Social Support
lynn, wanted you to know im thinking of you.. and sending good thoughts your way... it sounds like you have been a wonderful caring daughter and have done everything you could possibly do and more...
cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Fri Nov 19, 2010 11:49 am
Profile

Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: The Need for Social Support
Praying for you here, Lynn. Godspeed for your trip and gentle mercies for all your family when you arrive.
PatS

_________________
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]


Sat Nov 20, 2010 12:36 am
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 47 posts ]  Go to page Previous  1, 2, 3, 4  Next

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010 phpBB.fr