Careliving Community aims to empower caregivers to care for themselves by providing a place for discussion, connection and support.

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Careliving Community is a social network  designed exclusively for caregivers and family members of stroke survivors. In this free private space, you will be able to connect, support one another, share advice and swap stories through a discussion forum. Topic-specific blogs will be regularly posted by fellow caregivers.

Blog Posts

2012 Virtual Health Fair Today!

Posted by Admin on May 16, 2012 at 9:00am 0 Comments

Don't miss the opportunity to ask questions and visit booths at National Stroke Association's second annual Virtual Health Fair.

A caregiver-focused webcast will begin at 5 pm Eastern time and cover role changes, self-care, and more!…

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Alone

Posted by Adrian Serra on May 15, 2012 at 2:26pm 4 Comments

Today is my 55th birthday. I feel alone. My ex who I care for has decided that he has no interest in making me happy. I get grunts. I get no thanks. I am a servant. Plain and simple.

 

He has come a ways from when he first had this stroke. Five months in and now we find out he had a heart attack as well and must see a cardiologist.

 

In the waiting room on the eve he was to come home a male nurse overheard him tearing into me. I began to fall apart. After the…

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Forgive your trespasses: You are a care partner not a Saint

Posted by Lori on May 10, 2012 at 12:30pm 7 Comments

Forgive your trespasses: You are a care partner not a Saint

As a care partner it is easy to get wrapped up in the idea that you have to be perfect, a saint if you will. We are trying to be all things to all people and lest not forget those around us reminding us we are doing something most people could not or would not ever do. For this reason it is easy to get caught up in the idea that we should not experience human frustrations or emotions.

 There can become a…

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More life...

Posted by Nancy on May 2, 2012 at 9:55am 7 Comments

I am not a blogger by any means.  Although I can admit a sense of freedom in writing down my feelings (thinking no one would actually read what I wrote!).  I am amazed at the number of replies I received about what I wrote a few weeks ago.  It is so hard when you don’t have anyone to talk to.  Some days I want to scream my frustration, loneliness, sadness, etc. 

When I wrote my list of things that I know I feel, it was mostly to just be able to say them “out loud.”  It’s the first…

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Forum

i need help

Started by Marie in Tell Your Story, Get Support. Last reply by Jennifer 17 hours ago. 2 Replies

Hello, my name is marie kluss.. i am deaf, 31 years old, and lives in chicago, illinois. I want to be caregivier for my dad.. He is just turned 59 years old, Veteran, and at nursing home. ( i hate…Continue

Can anyone help me understand how Medicare and Blue Cross supplement works with rehab???

Started by Jennifer in Resources. Last reply by Jennifer on Thursday. 4 Replies

My dad has been in sub-acute rehab since May 8th and they want to upgrade him to acute rehab.  My step-mom was told by someone at the facility that we want to send him to that his stay would be 23…Continue

An AAC Device that might help adults with Aphasia

Started by Barbara Weinbaum in Tell Your Story, Get Support on Tuesday. 0 Replies

Hi, My name is Barbara and I work for a company called Lingraphica.  We manufacture speech-generating devices for adults with aphasia. With the help of Lingraphica products, adults with aphasia or…Continue

Fear of unknown

Started by Yvonne in Caregiver Frustration, Anger, Depression. Last reply by Jeanne on Tuesday. 4 Replies

On May 6th, mom had a hemorrhagic stroke which left her critically ill. she is still in ICU. I still remember the day it happened, we were having lunch and she was abnormally quiet and withdrawn. We…Continue

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Latest Activity

Jennifer replied to Marie's discussion i need help
"Hi Marie, My heart goes out to you.  What a difficult situation to be in.  You could also move nursing homes.  There are some that are better than others and it would allow you to get everything in order before he comes home to…"
17 hours ago
Diane S. replied to Marie's discussion i need help
"Marie, My husband's stroke was also in Oct. 2010..... So sorry to hear what you are dealing with. My hubby also cannot speak well, and cannot walk and has a feeding tube. When my husband was in Acute Rehab, the doctor in charge told me they…"
yesterday
Donna Allen commented on Nancy's blog post Life now
"That had to be so difficult for you, Juanita.  It's a lot of responsibility for one person to have to face alone.  I had to make some tough decisions for my former husband and also for my father, so I do understand.  All we…"
yesterday
juanita goyette commented on Nancy's blog post Life now
"It was never about calling 911. It was the decisions made during the 22 days in ICU and the concerns regarding his wishes and the trust he placed in me to speak for him during that critical time."
yesterday
Mary Ann commented on Nancy's blog post Life now
"Donna, You are so right.  Call 911.  We are not the ones to make a DNR decision.  Who knows what the medical reason is like you said unless medical personnel are there. Plus, who is to say law wise we could not be in trouble for…"
yesterday
Profile IconLauren Smith-Washbourne and Kim Hunt joined Careliving Community
yesterday
Marie posted a discussion

i need help

Hello, my name is marie kluss.. i am deaf, 31 years old, and lives in chicago, illinois. I want to be caregivier for my dad.. He is just turned 59 years old, Veteran, and at nursing home. ( i hate nursing home due to communication, neglect,  and dad needs more help then nursing home provide) I mean my dad have stroke since oct 2010, tbi, pstd, etc. I dont see how can my dad get nurse attention since he cant talk stroke due to left brain damaged and he cant even call a nurse if he wants to get…See More
yesterday
Barb Lehr commented on Nancy's blog post Life now
"Donna- spot on, as far as i'm concerned, about DNR. I guess we'll "all" know when "nothing else can be done". We won't LIKE it, but we'll deal with THAT, too. Here's hoping we all have many more years…"
yesterday
juanita goyette commented on Nancy's blog post Life now
"Just to be clear- I am not sorry I called 911 and would/will do the same in the same or similar situation. I am glad I did review my actions and discussed the details with my husband. Now, I believe we both understand the what and why. The…"
yesterday
Donna Allen commented on Nancy's blog post Life now
"You are so right, Barb, and thank you for having the courage to put things in perspective.  These are not easy issues to talk about, but it's necessary to do so in order to work through our feelings over what has transpired.  We tend…"
yesterday
Barbara Weill Greenberg commented on Nancy's blog post Life now
"Thanks Barb.  You're right.  And at the time, calling 911 was the only thing I could do.  I did not think of anything else except getting my husband to the hospital and saving his life.  Now, however long it lasts, I am very…"
yesterday
juanita goyette commented on Nancy's blog post Life now
"Until I got stuck on the list item, I didn't connect his anger with his pre-sttoke statements and plans. We had not discussed it at all since the stroke. I believe I did abide by his wishes, but, until we examined the issue together, I…"
Friday
Barb Lehr commented on Nancy's blog post Life now
"something from the last 2 "posters" is rubbing me the wrong way and I can't quite put my finger on it. I don't want to sound judgemental, but this 2nd guessing  whether or not 911 should have been called or not and…"
Thursday
Barbara Weill Greenberg commented on Nancy's blog post Life now
"My husband, who had a massive stroke in December, can talk again, and once yelled at me for "getting us into this mess by callin 911.". He later said he did not mean it, but I didn't feel I had any choice. Juanita, I understand what…"
Thursday
juanita goyette commented on Nancy's blog post Life now
"No more fretting about what isn't or used to be..."
Thursday
juanita goyette commented on Nancy's blog post Life now
"I have read and reread your list several times and also read all of the comments. I, like everyone else, share the connection with most all of the items. One of the list items gives me pause and forced me to really think. "How lucky we are…"
Thursday
 
 
 

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