Caregiver Profiles on Alzconnected .org

btl1953

I've been on this forum for a little while now and found it very helpful getting ideas and suggestions from so many that have already been where I am undoubtedly headed. I'm not a prolific poster ( on this forum or other forums that I participate in) where I see other members have thousands of posts.  When ever I ask a question or make an original post I always am sure to reply to posters that have weighed in; usually to thank them and report back on how things went -- plus it is only courteous -- and I observe most Forum member here do this.  Something I do a lot when reading replies to something I posted is look at the replying member's profile to get an insight as to where they are coming from.  But what I have noticed is that it seems like most forum members have basically a plank profile -- and I'm not criticizing -- just curious as to why.  I'd be interested in what part of the country people reside (maybe even get to meet someone close by given the isolation a lot of caregivers feel); or know if they are close to my age (given that I guess younger caregivers may have way different outlooks compared to more senior caregivers); etc.  Just wondering?

Arrowhead

Some time ago I posted the same idea that you just did. I don’t understand the blank profiles either. It’s difficult to give advice when you don’t fully understand the situation. I hope your post succeeds where mine failed.

French

I also find helpful to have caregivers profil. To know for how long they have been caregiving, their age, if they have children. It helps to understand them and to compare their situation to mine.

At first, I hesitated to write a complete profile, perhaps not to be recognized. But I don’t mind anymore. What I find here is so helpful.

Ed1937

I guess some people just don't want any info about them online. I agree that it's helpful to know a little about the people you are conversing with. And it also can help to give better replies if we know where they're from, and the ages of them and their LOs, including their kids, and marital status.

60 falcon

I suspect the people without anything in their profile simply are more comfortable with being anonymous.  It's tough dealing with the things we struggle with, and often the information and experiences shared are very sensitive and personal.  Could be that there's more than one family member or other LO who also is on the forum and it's more comfortable being anonymous.? Just a thought.

I agree with you, that people's profiles helps me to know where they're coming from.

harshedbuzz

I wonder sometimes if the people who initially come here and post without filling out a profile are in something of a crisis-mode and in a hurry to post. Perhaps they have a new diagnosis and are figuring out next steps. Sometimes they've become a primary caregiver because a spouse has passed and had been providing a lot of scaffolding. Other times, I feel people turn up when they have a specific behavior or symptom vexxing them.

loveskitties

Some of it may be the way the profile page is set up.  

You can enter your information, but unless you click on the privacy tab and select your preferences, all of your information will appear blank to others.

Joydean

I’m so glad you asked that question. I’m very new to the site, and am so grateful I found it . It has been so beneficial to me. Some of the time I want to just cry! And other times scared and want to run and keep running ! But I’m not a coward. I have taken care of my husband before when the doctors didn’t think he would make it. He did! But this Alzheimer’s is a battle that no one can win. My husband has gone from a 4 to 5 and 6 in 3 months. The new medicine his VA doctor just put him on seems to make some difference. My heart goes out to all of you that have been on this journey so much longer than we have, but please know your story is so very helpful! Prayers for all, and God bless you and your love ones.

Rick4407

I frequently look at a posters profile.  Partly to give a more suitable response.  There is also just a general interest looking for posters with similar backgrounds.  I would like the profile section to be a little longer.  I review and update my profile about once a year.  Rick

LadyTexan

I keep a low profile online. I am NOT on Facebook, Twitter or Instagram. I am more active on this forum than anywhere else. 

While in the workforce, I took several hours of cyber security and fraud training annually. I am aware that the more I engage or expose myself online, the greater the risk that I may be a victim of hacking, identity theft or other schemes/scams.

Sadly, bad actors and schemers prey on vulnerable populations such as seniors, the disabled and the ill or injured. I don't want to open myself up to more on-line risk. As a result, my profile is rather sparse. My posts on the other hand can be quite candid and revealing.

GothicGremlin

Like LadyTexan I'm not on Facebook, Instagram, etc., etc., but I am barely on Twitter - not under my real name, but there is a real photo of me there. I used to post there regularly for work, but it got so annoying that I quit for a number of years, and have only just gone back, barely. Here I just use a photo of one of my interests, the game of Go.  A lot of people have photos of their LOs up, but I'm not comfortable putting up a picture of my sister without her consent (she'd probably be fine with it, but she's stage 6 now and can't meaningfully consent to much at all).

I try to stay somewhat under the radar for privacy reasons - I just don't want a lot of personal data tied to me, and then matched up with info from my other profiles, and then that matched up with other consumer data. I'd die before I go on Facebook. When my friends and s.o. talk about me on FB, they all refer to me as "she who is not on Facebook", and I've instructed all of them to request all photos of me be taken down. I can't do anything about public records, and those are public for good reasons, but I try to limit the damage. 

As a privacy advocate (yep, that's my day job), it's hard to find the balance with privacy and  a place like this. I didn't know anything about Alzheimer's walking in the door, and needed to learn a lot very fast, and balance that against all of the extremely personal information that is shared here. It makes me very uncomfortable, and yet.... I've gotten great advice from others, and I've tried to give good advice back where I can. It's a tough call.

I'm on the west coast, btw.  

RobertsBrown

Thanks for the nudge.  Updated.

Consider the possibility that a lot of people come into forums like this 'hot', and want to get through the housekeeping as quickly as possible to see if they can find what they need.  Once they settle in to the point where you see them around and want to check their profile, they may have just not remember to go back and update it.  That would be me.  History tells me I am not particularly unique.

Sligo177

Good Morning!

You are right, this information is so helpful to others, I haven't shared much in my profile - I'm going to update it today.  The whole point of the forum is to share and get ideas, I have benefited from others and I guess my info could help someone.  Have a good day, and thank you.

btl1953

Thank you to all that have replied. I perfectly understand reasons for not wanting to place anymore information out to the public; the internet has been a blessing and at the same time a curse because of bad actors that would try to take any advantage that they can -- especially of people in a vulnerable position as I imagine most people are that are suffering as victims or caregivers of a victim of this horrible disease. To those that have shared information about their situation thank you. Reading through the information posted has helped me not feel isolated and like I am the only one dealing with this disease. One thing that strikes me reading through the profiles of people in this thread (and others from prior posts) is the number of  loved ones suffering from early onset dementia. My mother was diagnosed with Alz at age 85 and passed away at age 91. As sad as it was both my Brother and I agreed that she had a good long life and we were happy for that.   Not to diminish anyone suffering from this darn* disease or those caring for them I feel that those suffering from early onset dementia are being cheated out of a little more of the time any of us have left on this earth.

As one respondent to this thread mentioned -- they just updated their profile -- I just did the same thing. I think that is important as situations surrounding this disease can change quickly as mine have.

Thanks.

Buggsroo

I updated mine as well. It does help to have some background on the poster.

Gig Harbor

I used the name of my town when I signed on. Within two months three ladies contacted me and we started meeting once every few weeks. We added more ladies to our group as we met local ladies thru word of mouth. We now have a group of 12 and meet once a week for about two hours. The group is fluid as some spouses have died and the remaining spouse no longer comes. Others have continued to come. We are all friends who might never have met but we enrich each other’s lives. When we hear of a dementia spouse we invite them to join us. It is so nice to have friends that understand what we are going thru. Oh and we also have one man in our group. It is totally not structured and some weeks we hardly even talk about dementia.

DrinaJGB

I, too , am not on FB, etc. I used to be on nextdoor just to keep in touch with neighbors but last winter I was messaged by a "neighbor"---who wanted to connect. Long story short I realized it was a scammer just from one conversation. I became suspicious and asked a question catching him in a lie.

I deleted my profile and stopped posting. If you google nextdoor scammers you will see why. This is the only site I post on and I value my privacy for obvious reasons. The sharks are EVERYWHERE. It's very sad.