Private Caregiver Forum

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Bujy

Active member
Joined
Sep 22, 2007
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33
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Loved one DX
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Family
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CA
State
BC
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Vancouver
I was thinking if there could be a private caregiver forum. We recently had a heartfelt post from a CALS, that I thought was horrifying at first. I was horrified for our PALS on this site that read that. But had to see that they are genuine feelings.

I think there are some issues that some of us may feel better about sharing if it were a closed forum for just us. I've gotten a few personal messages regarding that thread and sounds like there are several others that have similar feelings for their loved ones. But they dont discuss it publicly because of the strength of their feelings. Some pretty hurt and confused people.

*shrugs* My idea for the week. he he.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
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NW of Toronto
Hi Bujy. While your idea is good in principle it is fairly unworkable. First of all how do we regulate who gets in? How do we know who really is a caregiver? The PM system works quite well. It is a private message between 2 people. No one else can see it. Some postings on the forums can be disturbing to others. We created the Memorial forum because some members chose not to read about deaths. They bypass that forum. The rest of the forums are about people dealing with the disease. Every one needs to vent once in a while. Sometimes is ain't pretty but then neither is ALS.

al.
 

Marjorie R. Wilcox

Senior member
Joined
Nov 21, 2007
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660
Diagnosis
10/2007
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US
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New York
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Richmondville
Here's my two cents worth. Us CALS do not have to hold anything back. We need to vent. But we need to think a few minutes and word our experiences with tact, compassion, and dignity. You can say the same things in many different ways....

Like if you have to talk "bathroom talk" it is nicer to say B.M. than s--t. I liked the idea of a private place for us to go, but know the problems AL brings up, and think we can say whatever we need to by being tactful.

And after you've written a post, reread it wearing the shoes of a PALS and think of how you'd feel.
 

Micheline

Active member
Joined
Sep 23, 2008
Messages
80
Reason
PALS
Diagnosis
11/2008
Country
CA
State
British Columbia
City
Campbell River
As a PALS, I read the caregiver section daily. I want to be able to understand what, how my husband and children are and will be going through down the road. What I can make available for them. It touches my heart deeply, I may not post a reply but I do fully and completely understand what a CALS go though. I am grateful for my family and every caregiver out there. Anything that will help them, to help me I am all for. My children aren't on here yet, so I try to let them now what to expect from others experiences. Minus the details ;)

There are things I don't want my family to do for me. So I do have home care now. Not everyone can do it, but anyone who does has my upmost Respect and Kudos! Venting, I have not yet, I think my day will come soon, very soon. But I do not and will not disagree with anyone's feeling as it is thiers and not mine. I do feel heart felt compassion for all the CALS & PALS that are here. There is not one day goes by that I don't visit. I want the information, weither I like the outcome or not. This is all education for me and my family members.

Micheline
 

Bujy

Active member
Joined
Sep 22, 2007
Messages
33
Reason
Loved one DX
Diagnosis
Family
Country
CA
State
BC
City
Vancouver
I'm not sure why it's unworkable, but I appreciate the thought.

There are forums that I'm not allowed to visit. Says I am not authorized. So, I assumed it would be.

No hard feelings. I am not comfortable with this type of forum layout. However, I know that you do minister to lots of people and it's been a very useful site for some.

Keep on keeping on!
 
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