Caregiving resources for every stage of the disease.
RSS Feed Print
Do we need this split?
Lionrhod
Posted: Tuesday, August 11, 2015 3:11 PM
Joined: 4/4/2015
Posts: 41


As a heterosexual woman with numerous gay friends, I ask this question in the spirit of wishing to be enlightened. Do we really need a separate discussion board in regards to our Loved Ones with Alzheimer's? Are the issues of LGBT folks with Alzheimer's different, and if so, how?

I can see some instances where this may be useful, in particular regarding partners who have legal issues where they're not "allowed" to make decisions regarding their beloveds

Thanks to the recent Supreme Court decision (about freaking time!) we're hopefully beyond that.

I'd like to see us all working together. IMO, the experience of a person dealing with ALZ isn't much different whether we're gay or straight, unless that experience is specifically about our interaction with the law or with prejudice.

Am I crazy?

In other words, I would personally like to have you all on the caregivers forum, where it shouldn't matter who we love, but only that we love.

bethNC
Posted: Tuesday, August 11, 2015 3:48 PM
Joined: 6/6/2015
Posts: 55


Yes, a separate LGBT forum is needed. I'm just sorry it doesn't have much participation; it's a pretty new feature, though, so as people learn about it there should be more voices here.

Not only are LGBT legal issues quite different from other CGs', relationship dynamics are often unique as well.

Add to that the hostility that many LGBT couples face on a daily basis, a separate forum provides a level of safety and unconditional support that may not be available on the CG and Spouses' boards.

I applaud the Alz. Assn. for recognizing this need and providing this space.

Lionrhod
Posted: Tuesday, August 11, 2015 5:06 PM
Joined: 4/4/2015
Posts: 41


In that case I totally support this board but am sad it's needed. I still hope that as many of you as possible will join in on the normal caregivers board - I want input from as many wise souls as possible.

I don't personally understand hostility to LGBT caregivers or their relationships, but I understand that it exists.

Yes, indeed, if this is needed, then giant kudos to the site for helping with that.

Forgive me, I'm just focused on inclusiveness, so sometimes I don't recognize exclusive situations.





bethNC
Posted: Tuesday, August 11, 2015 6:13 PM
Joined: 6/6/2015
Posts: 55


Normal caregivers???
Mimi S.
Posted: Wednesday, August 12, 2015 10:18 AM
Joined: 11/29/2011
Posts: 6374


Beth,

Try not to take offense at the use of "Normal Caregivers". I don't feel it was said as any kind of a put down.

I, too, try to be all inclusive and have questioned the split between spousal and caregivers. I certainly understand that there are different issues at the beginning. Certainly children don't have to deal with intimacy issues that spouses must.

If one reads the posts on both boards, once in a while one comes across an issue that is completely spousal related. Most of the time they could be on any board.

However, the spousal partners, years ago, petitioned for a separate Board and got it. And it's now the most used board.

I have no idea if LGBT folks petitioned for this Board or if the Aliz. Assoc. thought it would be a good idea. Your reply justifies its being.

Jo C.
Posted: Wednesday, August 12, 2015 11:58 AM
Joined: 12/9/2011
Posts: 8879


One of the dynamics of this Message Board is that anyone can post on any Forum they wish. The LGBT Forum has been in place for awhile now, and for the most part, most of the LGBT folks rather than use this space, go to the other Forums to communicate. There is a reason this happens.

Usually there will be specific problem issues and the vast majority of Members with much experiential wisdom and information are on the other sites, so that is where the most input, assistance and support is found. If one has nutrition, medication, toileting or behavioral issues, etc., one often needs a goodly amount of input quickly.

Without exception, I have seen all openly LGBT folks welcomed with open arms on the other Forums. This is the intended spirit of this wonderfully supportive place.

This LGBT Forum serves a purpose for those things that are unique to LGBT persons that cannot be served on other Forums and there is also a level of deep understanding here that if one has not walked in those particular shoes, well . . . intellectual understanding is not the same as, "being there."

If a person wishes to do all their communicating here on this Forum, that is certainly a choice. So; it is all good.

Warm wishes to everyone,

J.



bethNC
Posted: Wednesday, August 12, 2015 2:32 PM
Joined: 6/6/2015
Posts: 55


Whether it was said intentionally or not, we have been classified as abnormal, degenerate predators for so long that it is really hard not to take offense.

I can't get my thoughts together to explain any more. Well, except to say that the Supreme Court decision on gay marriage has not taken us "beyond" LGBT bigotry any more than Barack Obama's presidency has taken us beyond racial bigotry. There is so much work to be done.

If you have gay friends, if you have black or Hispanic or Muslim or dementia-affected friends, ASK THEM what they need from you. Ask them to help you understand their issues.

I apologize if I've offended anyone.

Jo C.
Posted: Wednesday, August 12, 2015 3:27 PM
Joined: 12/9/2011
Posts: 8879


Hi Beth, absolutely NO offense seen in your writing. I am truly sorry for the experiences you have had, it is deplorable and while progress is being made, it is by small steps and it is going to take awhile.

No matter what; where human beings live, it seems there will always be something to discriminate about; race, religion, gender, life style, social position, overweight, profession, you name it, there will always be something discriminated against by some people. Drives me nuts.

I am an RN of many years and also Administrator of Patient Case Management. I have seen pretty much all there is to see and witnessed the behaviors of others from every walk of life over these years. I also had a brother who died of Aids. I certainly do "get it."

I live in Southern California where things are far more open, but STILL there is plenty of bias to go around on many levels for many different classes of people. If your avatar names means Beth from North Carolina, you undoubtedly have more issues re what we are talking about.

One thing for sure, you will NOT experience that on this Message Board. I am truly heartened by that. We have had some Lesbian and Gay couples whose Loved Ones (LOs) were at end stage and the caregivers were so lovingly supported through the end illness and the subsequent death. No discrimination, just love and support of another person taking a similar journey as the rest of us.

Many of the Lesbian and Gay couples when they are here, communicate mostly on the Spouse/Partner Forum, that is really all about the couples relationships as well as the dementia issues.

So . . . . I am very glad you have found us here and know what? I cannot recall your history; whether you have a LO with dementia or whether you have a Young Onset, what stage exists and what issues there may be, etc. I am looking forward to getting to know you and you are now part of this large, supportive extended e-family. We are here for one another. Welcome!

Warmest wishes and a big soft hug,

J.



King Boo
Posted: Wednesday, August 12, 2015 3:54 PM
Joined: 1/9/2012
Posts: 2717


Hey Beth,

I am very glad that this board is here. So much can be unique to the LGBT community, that even the most empathetic hetero person just can't get because they are not gay - my 2 close caregiving friends are subject to all sorts of scorn and derision on a daily basis. So while the news suggests progress, the actual daily is very different, as you say. I am glad this is here as a haven when needed, but all are welcome anywhere here on the boards, please know.

An aside- I have a photo of an aunt, who was 90 when she stood up as witness for her 2 caregiving male friends, who were married in DC. She loved them dearly, and accepted them totally. I have that photo in a special place, though she is long gone.


The_Sun_Still_Rises
Posted: Sunday, September 20, 2015 11:54 AM
Joined: 7/24/2015
Posts: 3020


Lionrhod wrote:
As a heterosexual woman with numerous gay friends, I ask this question in the spirit of wishing to be enlightened. Do we really need a separate discussion board in regards to our Loved Ones with Alzheimer's? Are the issues of LGBT folks with Alzheimer's different, and if so, how?

I can see some instances where this may be useful, in particular regarding partners who have legal issues where they're not "allowed" to make decisions regarding their beloveds

Thanks to the recent Supreme Court decision (about freaking time!) we're hopefully beyond that.

I'd like to see us all working together. IMO, the experience of a person dealing with ALZ isn't much different whether we're gay or straight, unless that experience is specifically about our interaction with the law or with prejudice.

Am I crazy?

In other words, I would personally like to have you all on the caregivers forum, where it shouldn't matter who we love, but only that we love.

----------------------------------------------------------------------------------------------------------------

No you are not crazy, and re the Supreme Court, IKR?!

I personally do not think we need a split...there are many splits on this forum and it just leaves things really confusing for me too.

Join the CG's section and just jump in...or any other section here too, there is good to be had everywhere.

Welcome, by the way.


alz+
Posted: Wednesday, November 25, 2015 5:34 PM
Joined: 9/12/2013
Posts: 3203


Where can I post? I have not been "normal" since age 10 months! ha!

But fair warning, even before having ALZ I often said things that were seemed insulting or lubricous. No harm was intended, we have enough problems without laying guilt or shame on anyone.

In an effort to lessen stress loads it helped me so much to learn to lower my expectations, forgive quickly, and insulate myself from other people's problems with me being me.

I think having a separate place for LGBT people is a beautiful thing, and I learn by reading at different places here, we all can learn from each other (and we want to).

Wish there were a separate "Men" and "Women" section some times, but then there is no real privacy on internet message boards.


Love  Courage and Humor


leftoutknitter
Posted: Thursday, February 8, 2018 1:26 AM
Joined: 8/5/2014
Posts: 6


As a member of the dominant group (are a white heterosexual cis-male?) it would be difficult to understand why it is needed because you have never experienced a lifetime of "otherness" I don't find this space safe if people like you come here to ask if we need to be in a separate support group. I would hope people would self select and only enter a group they could meaningfully contribute to or need support from. This is a question you can ask somewhere else, or to your friends who have dementia who are gay. And your "we are past that" comment is so far off base I can't begin. Just because it's legal to marry doesn't mean that everyone will or wants to or feels that they can. 
I drop in on these forums when I'm really looking for some connection and support. Not. This.
leftoutknitter
Posted: Thursday, February 8, 2018 1:32 AM
Joined: 8/5/2014
Posts: 6


Lionrhod wrote:
In that case I totally support this board but am sad it's needed. I still hope that as many of you as possible will join in on the normal caregivers board - I want input from as many wise souls as possible.

I don't personally understand hostility to LGBT caregivers or their relationships, but I understand that it exists.

Yes, indeed, if this is needed, then giant kudos to the site for helping with that.

Forgive me, I'm just focused on inclusiveness, so sometimes I don't recognize exclusive situations.



NORMAL caregivers??? Seriously? Please stop. If this isn't your space then please leave, there are plenty of people who will talk to you about caregiving your straight cis-gendered spouse/parent, but there are nuances to LGBT relationships you cannot imagine and there are plenty of people who are 65+ who are not of this "everybody is gay and it's cool" era. There are role changes that do NOT translate to straight roles, there are existing family conflicts that despite legal marriage can wedge partner against family in a legal and social shaming way that you cannot fathom.


Jo C.
Posted: Saturday, February 10, 2018 9:19 AM
Joined: 12/9/2011
Posts: 8879


Hello leftoutknitter, and welcome.

It seems you have landed on a Thread that is very old, from 2015; three years ago.  It is highly unlikely that any of the individuals you are writing to are here any longer.

I just clicked on and read your Profile and from what you wrote, it appears that you were diagnosed with Alzheimer's Disease thirteen years ago, before June of 2005.

When I was on  the Young Onset Forum, I noticed you Posted one line in January, and had noted that both Persons With Dementia as well as some Caregivers Posted there. 

https://www.alzconnected.org/discussion.aspx?g=posts&t=2147538664 

As I Posted above, everyone is welcome to Post on whichever Forum they wish.  Caregivers sometimes Post on the Forums for those with dementia, and Persons With Dementia  also Post on all of the other Forums.  This has actually greatly improved the sharing, understanding and has added much to everyone in multiple ways.  It is a very welcoming place of support and caring.

In that light, I would like to invite you to re-visit and perhaps even write a Post or start a Thread on the, "Young Onset" Forum.   That is the busiest Forum for those who have dementia no matter what the age of onset. (The "I Have Alz." Forum is not as well attended.)

Young Onset has a variety of people of all ages, and it is a good place to make a solid connection to share and discuss issues, feelings, and needs and sometimes, just to talk off-topic.  The folks on Young Onset provide one another with much support.  Perhaps it would be worth taking another look and even joining in.

Hope to see you there and I am also sending warm thoughts your way,

J.


leftoutknitter
Posted: Friday, February 16, 2018 9:33 AM
Joined: 8/5/2014
Posts: 6


thanks J. This isn't a good fit. Too many places to look for info and no faces to the names.  thanks for the reminder!
Jo C.
Posted: Friday, February 16, 2018 1:00 PM
Joined: 12/9/2011
Posts: 8879


Hello again; I am sorry that you are not finding a place of comfort; but do know that if you should change your mind, we will still be here in support of one another and would be delighted to see you again.

By the way, in case you did not now about it; the Alzheimer's Assn. does have a 24 hour Helpline that can be reached at (800) 272-3900.   One can call and ask to speak to a Care Consultant.  There are no fees for this service.  Consultants are highly educated Social Workers who specialize in dementia and all that entails and they can be quite supportive.

Anyway; just wanted to mention that as sometimes we just need to talk to someone; even in the wee hours, so that is an option.

Take very good care of you, and I will be thinking of you.

J.


Jo C.
Posted: Tuesday, March 6, 2018 7:42 AM
Joined: 12/9/2011
Posts: 8879


Hello leftoutknitter; if you are still around reading, know that I am thinking of you.

J.


 
× Close Menu