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Why are you folks living in the dark ages?
Michael Ellenbogen
Posted: Sunday, March 6, 2016 10:47 AM
Joined: 11/30/2011
Posts: 2680


5 years ago we started a support group online for people with dementia. Today there are many all over the world. Don’t you think it’s time the caregivers do the same? If you are willing to coordinate people here willing to join I will do my best to help make it happen. But you need people who are willing to meet and talk. So much better then wasting your time on blog. And the best part you can do it from the luxury of your own home.

 

Unforgiven
Posted: Sunday, March 6, 2016 11:29 AM
Joined: 1/28/2013
Posts: 2616


For my part, I don't have any computers or mobile devices that will handle skyping without delays and crashes.  I prefer to formulate carefully thought out replies that leave a record of what was said.  I also like being able to read the input from other people who may not be online when I am.  Lastly, I am subject to interruption at any time, with a care-giving situation I have to deal with immediately.

So, yes, I'm living in the Dark Ages, but I like it that way.


Michael Ellenbogen
Posted: Sunday, March 6, 2016 11:41 AM
Joined: 11/30/2011
Posts: 2680


Don’t underestimate the abilities of your hardware. Don’t feel to bad as I don’t even own a cell phone. The simple product to use is zoom. I can almost guarantee you it will work. I am willing to test it with you. This is open to anyone who thinks it will not work. You need to try it don’t make assumptions and self limit yourself.

 


Michael Ellenbogen
Posted: Sunday, March 6, 2016 12:27 PM
Joined: 11/30/2011
Posts: 2680


Its amazing as I just received this email.

 

From: Caregiver SOS [mailto:sueellenlewis@msn.com]
Sent: Sunday, March 6, 2016 12:44 PM
To:
Subject: #161--Reminder: Register NOW for "Long-Distance Caregiving Issues and Solutions"

 

Having trouble viewing this email? Click here

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Guest Expert:  Spencer Brown  

Topic:  "Long-Distance Caregiving Issues and Solutions"   

Date:   Tuesday, March 8th, 2016 

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Sent by sueellenlewis@msn.com in collaboration with


bela
Posted: Sunday, March 6, 2016 8:46 PM
Joined: 12/15/2011
Posts: 4105


What are you asking us to do?
KML
Posted: Monday, March 7, 2016 12:58 PM
Joined: 11/30/2011
Posts: 2105


Many caregivers are on the job 24/7.  When I cared for my father I was on call 24/7.  I also held a full time job, I had a child and a family and a home and I wasn't unique, this is the story of thousands and thousands of caregivers.  I was stretched to the limit.  I understand you have your ideas and opinions, and some are very good, but please keep in mind that sometimes your well-meaning statements can sound critical and almost attacking to people who are going above and beyond, often putting their own health at the bottom of the list.  The title of your post, to me, personally was offputting.   The content of your post can be informative and helpful so sledgehammer techniques are not needed when you have a good suggestion.  Caregivers are doing the very best they can with what they have to work with.  Please keep that in mind.  Not all caregivers have the luxury of technical devices, not all caregivers have computers, not all caregivers have the luxury of time on their hands, not all caregivers have the luxury of even getting out to grocery shop.  So for these people, you might understand how strong opinions and statements like why are they living in the dark ages, might not be the best approach to take.  Keeping in mind that everyone's situation is unique is important.  What you see as a solution, can be impossibility for another.  Should we demoralize that person?  No, we should respect that they are doing the best they can with what they have to work with.  Can we make suggestions?  Yes, of course, as long as it is with regard and respect.

It's wonderful that you are trying to find solutions, and I know that your intent is meant to be helpful, but I would just mention to keep in mind that caregivers many times are on the edge of break, they are doing all that they humanly can.  If there is a way to soften your suggestions and remarks, that might be the best of help you can give to caregivers.  They are human, just like you.  Sometimes they seem superhuman because they have to be, but in reality they are human.  They get sick, they get tired, life comes at them from all directions and they have to juggle constantly.  Mostly they don't have the luxury of time or finances, so we have to be conscience of this and not poke so hard at them.  They are trying, just as you are.  This is just my opinion, my first thought when reading the title of your post.  My feelings are based as a former caregiver to my mother and then my father. 

God bless everyone for their efforts and courage in this war against Alzheimer's.

 


a_step@a_time
Posted: Monday, March 7, 2016 1:39 PM
Joined: 11/21/2015
Posts: 235


This post caught my eye.  I have wondered about this type connection. Dont skype and such use up data plans and some providers not allow?
Michael Ellenbogen
Posted: Monday, March 7, 2016 1:49 PM
Joined: 11/30/2011
Posts: 2680


I hear you and understand what you are say. But I also know form both sides. Weather it was a caregiver or a person living with dementia they all said it was the best thing they could do was to talk to others like them. It made them feel better and blow off some of that steam.

 

 

For the person who asked what I am asking for. I am looking for someone here coordinates at least 6 caregivers who would like to participate in talking to each other. You pick the time. I will try to find someone to make that happen. This way you can actually talk to one another. If you don’t want to show your face or don’t have a camera that is okay to. I do understand your lives are very stressful and this just may help you get some peace in your life. 


a_step@a_time
Posted: Monday, March 7, 2016 2:28 PM
Joined: 11/21/2015
Posts: 235


I was once a caregiver and I know it is difficult to coordinate and care for patient and take care of self.  Online discussion board ok b/c can read whenever have available time and learn from what others are asking.  I think expecting people to commit to specific time frame can be difficult.  Just like going to physical meeting.  Life is unpredictable.

What I might add, is that caregivers maybe review what the patient discussion viewpoint b/c most patients can't communicate their needs.  Viewing others who can still type can maybe be useful.


irisized
Posted: Monday, March 7, 2016 2:34 PM
Joined: 10/4/2015
Posts: 440


kml, you took the words right out of my mouth...I am 61 and on my own , caregiver for dh who is 62 ...my entire day is making sure he is safe, clean and loved...losing our home, and our jobs....after all that, I have ended up with high blood pressure, weight gain and was drinking and crying when he would sleep.... after all that I am spent....god bless
bela
Posted: Monday, March 7, 2016 7:27 PM
Joined: 12/15/2011
Posts: 4105


I am with KML  Quote he title of your post, to me, personally was offputting. Unquote

You are not a caregiver and have no idea what a caregiver's day and strength or level of exhaustion feels like or looks like.

You assume we are not using other programs- if you have suggestions then I suggest your provide links to those resources instead of attacking the reader-

IMO someone needs to review what you write before you post because you are often rude and critical.


susanz
Posted: Monday, March 7, 2016 10:56 PM
Joined: 5/14/2013
Posts: 451


I have to say that I too was offended by the title of the post. Then I read a little more what he meant, and I understand what he is trying to say. HOWEVER - sorry Michael, but you have NO IDEA what the life of a caregiver is like and I wish you would stop giving us your opinion on caregiving.  If you really think that 2 caregivers, let alone 6, can all get together on a computer at the same time, that's really funny.  24/7 caregiving, which many people here are doing, is 24/7 caregiving - not sitting talking with friends or having an afternoon tea party.

I agree with bela - someone needs to review your posts now. I am sure you don't mean to be, but alz is not letting you see clearly to realize how ridiculous some of your posts are becoming.

I am truly sorry that you Michael, and so many others are afflicted with this horrible disease. But please - you have no concept of what a caregiver goes through on a daily (sometimes hourly) basis. The LAST thing you should ever do is criticize a caregiver - you will need one someday and you better hope the person who helps you is half as good as some of the people on here.