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KevinChevyChase
Posted: Thursday, November 26, 2015 12:55 PM
Joined: 11/25/2015
Posts: 2


 Hi. I just joined after some tough news about my 47-year-old partner and I'm wondering if there is a way to talk, privately, with another caregiver in the DC area who has a partner under 50 or 55 or 60 who is coping with Alzheimer's.

Someone from the LGBT community would be a plus.

I have heard about support groups which is great, but I'm hoping to talk with someone on the phone.

Perhaps a text, at first, would be a good way to connect?

Thank you.

K.

 

This post was edited by the ALZConnected Moderator on 12/01/2015.


bethNC
Posted: Thursday, November 26, 2015 2:50 PM
Joined: 6/6/2015
Posts: 55


Hi Kevin,

Welcome to our little corner of the Alz. world. The LGBT board here at alz.org is pretty new and doesn't have a lot of LGBT participation yet, but you will find a wealth of information and support on these pages.

I understand your need for local support and someone to talk with, and I would think that in the DC area there should be someone who can fill that need. You could start by calling the national Alz. Assn. hotline: 800-272-3900. They should be able to put you in touch with LGBT folks in your area.

When I googled LGBT Alzheimer's support, this page came up. Though it is for the Phila. area, I would think they would know of any groups around DC.

http://www.alz.org/delval/in_my_Community_63464.asp

Two things I would suggest right away:

1. If you can, go back and edit your post to delete your phone number. While most everyone here is kind and gentle, creeps do crop up from time to time on any public board, so it's best to play safe.

2. Google "Understanding the Dementia Experience" by Jennifer Ghent-Fuller. It is not a short read but it is just about the most comprehensive and well-thought-out article of its sort available today.

Oops. Make that three suggestions: Please come back often, ask for help with any concerns or questions. or just come to vent. People here want to help, have vast experience as patients as well as caregivers, and in many ways can ease the burden.

And  your partner is more than welcome to join the I Have Alzheimer's or Young Onset boards. There are some remarkable people there.

 


eaglemom
Posted: Thursday, November 26, 2015 11:04 PM
Joined: 3/7/2012
Posts: 2356


Welcome Kevin to the message boards. I'm sorry that you are here, but you will find  all kinds of helpful information on this website. Please take some time to look around.

Have you contacted a local ALZ Chapter?  If not please do so. They will be able to tell you about support groups that are available. They will be a wealth of information.

I would urge you to remove your phone number. You posted it with the best of intentions I'm certain, however it is not a good thing to do. You can go back and edit it out of your posting.

In the evening there is a chat that goes on. You might want to look into that. At first all of this is totally overwhelming and your head just spins. Remember to breath and take a day at a time. We are all here to support you.

eagle


Jo C.
Posted: Saturday, November 28, 2015 9:20 AM
Joined: 12/9/2011
Posts: 10073


Hello Kevin; while I am sorry for the reason that brought you here, I send you a very warm welcome.  If you decide to share on the Message Board, the best place for this would be in the Spouse/Partner Forum.  There are multiple people there who have Young Onset Dementia and the helpful information and support on that Forum is very good.

By the way, I do want to share that we have had multiple gay partners/spouses who have gone to and stayed on the Spousal/Partner Forum during their journey and you will be fully welcomed there.  There is a lot of information and experiential wisdom to be gained there regarding the challenges of the diagnosis and disease; advice for those who are losing employment, suggestions regarding the psychological and physical challenges/problems, and lots and lots of support.

I would also like to suggest that you contact the Alzheimer's Assn. Helpline at (800) 272-3900, and request to speak to a Care Consultant.  Consultants are highly educated Social Workers who specialize in dementia and they can be very helpful, supportive and also can refer you to helpful entities in your community.  There is no fee for this service.

If you call Monday thru Friday, daytime business hours, you will automatically be routed to your closest local office.  This is good because they will be attuned to all what is available in your local community.  Weekends, holidays and after hours the calls to to the national office in Chicago.

 Some additional helpful reading that Members recommend:   "The Alzheimer's Action Plan," by Doriswamey and Gwyther (from Duke University); and "The 36 Hour Day," by Mace and Rabins.   There are also some good booklets that the Helpline Consultant can provide.

I can imagine the shock, stress and heartache that this situation is bringing to you and your dear partner.  I am truly sorry; but you are not alone.   We are all here in support of one another and that now includes you and your partner too.

Please let us know how you are, we will be thinking of you.

J.


bethNC
Posted: Saturday, November 28, 2015 11:04 AM
Joined: 6/6/2015
Posts: 55


Please stop telling newcomers to the LGTB board that "the best place" for them to post is on another forum.

This furthers the notion that LGBT concerns are not legitimate, that our unique concerns can be adequately addressed by people whose hearts may be in the right place but who have not experienced the day-to-day issues that we face. How will this forum ever become viable if posters (who are not LGBT) repeatedly divert newcomers to another forum?

This is not to say that LGBT members cannot find a wealth of information on the other forums, or that they will not be supported elsewhere. But to immediately tell someone who comes to the LGBT forum that this is not the right place is, to me, yet another slap in the face.

With this type of "support," is it any wonder that almost all the people who have come to this forum as their first contact have not returned?


Mimi S.
Posted: Saturday, November 28, 2015 7:19 PM
Joined: 11/29/2011
Posts: 7035


Oh Beth, I can't say what others meant, but I just feel so certain that no one on these boards meant to hurt you or make light of your situation.

What we are trying to say is that this Board has not yet caught on in the LGBT community. And if you are hurting, need to vent or are asking for advice, you need a response now, not in 6 months when it is hoped this board catches on.

Do post here, so that hopefully others see it, but if you need a response ASAP, also post on one of the other appropriate Boards.


bethNC
Posted: Sunday, November 29, 2015 8:33 AM
Joined: 6/6/2015
Posts: 55


Thank you for your kind reply, Mimi. I understand what you are saying and I agree -- and said so -- that there is a wealth of information and support on other boards. The problem comes when LGBT folks are essentially told, "Nobody uses this forum; go elsewhere."

What's a newcomer to think? That this forum is a sham? That the "normal" people (yes, I have seen that term used here) will be helpful and there may even be a few people like us who could give LGBT-specific information?

I'm sorry if I sound angry. I guess what I am is frustrated. I thought maybe posting in reply to questions on this forum might encourage LGBT participation and perhaps raise awareness among others that we do have unique issues and deserve a place where we can support each other. But it seems that every time I respond here, someone comes along to pull the rug out.

I will think about posting an invitation on the other boards for LGBT folks to come here. But right now I'm just a little discouraged.

Again, I appreciate your kindness, Mimi.


Mimi S.
Posted: Sunday, November 29, 2015 11:29 PM
Joined: 11/29/2011
Posts: 7035


Good idea about posting on other Boards. And also keep  posting here. We just hope that the Board will serve the purposes for which it was put here.
Jo C.
Posted: Monday, November 30, 2015 11:08 AM
Joined: 12/9/2011
Posts: 10073


Hi Beth: You are right; I did not articulate that well. I have inadvertently led you to misunderstand my intentions.  There is no demeaning or disrespecting this Message Board Forum.  We have had this Forum up for quite some time and fully support it.

This Forum has been communicated to the LGBT community by our Admin. folks who work with this. 

When someone comes here, they need to be welcomed and know they are being seen and heard.  BUT; the person often has very real needs that are pressing and often emotions are involved and people suffer.

We would love if this Forum was well attended and filled with supportive assistance and practical ideas when that is needed.  Your idea to share with others in the LGBT community that you know are living with dementia either with themselves as the person with dementia or as a caregiver of a person with dementia is wonderful of you and very helpful.  Thank you.

NOTE:  Rather than leave a person here alone with no input, and only the sound of crickets; the new Member is also informed of other options where there is a plethora of information and support to be had.

In the past, we have had LGBT folks who felt they were restricted only to this Forum and thought they would not be welcome on other Forums.  Not so.  Open arms welcomes on all Forums has been the way this has gone since day one.

This is a place of Inclusion, not Exclusion. 

Sometimes we have LGBT folks who self refer themselves to the Spousal/Partner Forum because they know there is so much practical hands-on information to be had there.  Some self-refer to the Caregiver's Forum.

No matter what one's orientation, the human body is the human body.  People are looking for advice regarding nutrition, swallowing issues, incontinence, skin care, medications, and a myriad of other problem issues.  Some are looking for input regarding types of doctors and specialists to see; staging changes, financial questions, Medicaid, paperwork needed, and much more where many Members can contribute their experiential wisdom to the inquiring person in need.  The new Members are the ones most needing supportive input and quickly.

I know how strongly you feel about this as you have mentioned this before and have experienced negative dynamics in your life from others. I am so sorry that you had to face that.  My beloved brother, who was Gay and who lost his life to AIDS, also dealt with matters on that line.  I get it.

Warm wishes, and thanks again for for your willingness to share this place within the LGBT community from a personal standpoint.  I will watch my words more carefully.

J.


bethNC
Posted: Wednesday, December 2, 2015 8:50 AM
Joined: 6/6/2015
Posts: 55


I am sorry for the loss of your brother, Jo, and of your parents as well.

I don't know how much I'll be able to contribute here and elsewhere over the next few weeks hope I can make a positive contribution.


Jo C.
Posted: Thursday, December 3, 2015 11:55 AM
Joined: 12/9/2011
Posts: 10073


It is always good to see you Beth, and I always enjoy reading your posts.  It is a busy month and there is so much happening with people.  Just drop in when you can.  I will probably be like a butterfly with hiccups for the next few weeks myself, and will drop in as I can too.

I have enjoyed reading your suggestions on Young Onset regarding Christmas; I had forgotten about those wonderful 99 cent store gift bags.  You reminded me in the knick of time!

Take good care and hopefully we will see you soon.

Warmest of wishes coming at you with a big soft hug,

J.