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Same Sex Relationship
catspjs
Posted: Saturday, May 18, 2013 11:30 AM
Joined: 5/13/2013
Posts: 67


Are there any other same sex couples out there who are dealing with this disease process. I am caregiver to my partner of 37 years & she has recently been diagnosed with Alzheimers. I imagine that many of the issues we face are the same as opposite sex couples, except that we do not have the right to be legally married. Neither our state (Kentucky) nor the federal government would recognize our marriage, even if we traveled somewhere to have a ceremony.

We have recently moved back to a community where we used to live, & we are encountering some old friends & trying to make some new ones. The change in Joan's personality is somewhat problematic. She forgets who people are, asks the same questions, gets confused, etc. But for me to have any kind of social life & community I need to take her with me everywhere I go. She is very dependent & gets anxious if I am out of her sight for more than a few minutes.

Thanks if anyone has any tips for dealing with these social situations.


LarryD
Posted: Saturday, May 18, 2013 11:50 AM
Joined: 12/1/2011
Posts: 1320


Alzheimer's disease is an equal opportunity employer. It doesn't care about your race, religion, sex, or anything else that defines or separates us as a society. Most of the problems you are facing or will face are the same for any of us. We love our spouses and depending on our personal beliefs and abilities, do the best job we can to care for them.


You may face additional stigmas and legal issues but if you read very much on this forum, most of us have lost many of our friends and family through ignorance or an unwillingness to get involved in what will surely be a long, hard, expensive, journey. Even though those of us who are "legal" may qualify for some additional help, it usually is available only when we have used all of our existing personal savings and resources. 


Having said the above, welcome to the forum where you will be given the very best information we all have. There have been a number of same sex couples in the past and I think there are current ones as well. Bob will probably tell you that there is room in the boat, so welcome.


catspjs
Posted: Saturday, May 18, 2013 12:15 PM
Joined: 5/13/2013
Posts: 67


Thanks, Larry D. I'm new to all of this & will be relying on this forum a lot.
jfkoc
Posted: Saturday, May 18, 2013 1:15 PM
Joined: 12/4/2011
Posts: 17267


Yes, there have been and undoubtedly are now same sex relationships participating in the forums. As Larry said, this is an equal opportunity illness and most of the issues that concern us are universal... sexual "preference" just does not matter much....plenty of room in the boat.

The change you is seeing in Joan will continue to be problematic. In fact  you will be lucky if you are able to continue to use that adjective.

We welcome you on this journey and are looking forward to getting to know you and Joan.


Johanna C.
Posted: Saturday, May 18, 2013 1:52 PM
Joined: 12/9/2011
Posts: 10049


Hello and a very warm welcome to you.  We are so glad you have found this wonderfully supportive place; we are all here for one another for support and to assist as we best can.

 

We have had same sex couples in the past and we continue to have same sex couples now, in the present.  You are not alone - you are now part of all of us.

 

I understand the ramifications regarding not all states recognizing same-sex marriage and can imagine the difficulty this must present with finances, healthcare, etc.

 

Hopefully, you have all the appropriate paperwork already in place such as, Durable Powers of Attorney for Healthcare as well as for Finance and hopefully, you are on all of Joan's financial  accounts.  This will help save you a huge amount of difficulty in the future.

 

If you do not yet have all the paperwork in place, please contact an Elder Law Attorney asap to get things in order while Joan can still sign documents outlining her wishes.  You can find this attorney specialty in the yellow pages, online and also thru, www.naela.org  where you will find listings according to zip code.  This specialty is one you will want as they are the most knowledgeable regarding the dynamics you are facing.  They can also help answer questions about qualifying for Medicaid and Guardianship should either become necessary. 

 

The Alzheimer's Assn. has a Helpline at (800) 272-3900.  If you call, ask to speak to a Care Consultant.   Consultants are highly educated Social Workers that specialize in dementia and they can be very helpful.  There is no fee for this service.

 

There are also LGBT specific resources; Lambda Legal:  www.lambdalegal.org they specialize in helping gay persons with legal issues, and with housing.  The latest number I have for them at their National Office is; (866) 542-8336.

 

I also had a listing in my resource info for SAGE; this is an organization for LGBT elder assistance.  www.sageusa.org/index.cfm 

 

You may also want to ask the Alzheimer's Assn. Social Worker about support groups in your community for all caregivers; and you may also want to contact the LGBT support organizations in your area; they may have special support groups for caregivers, and other resources, etc.

 

I am sorry to hear about Joan's decline.  I hope that you find a dementia specialist very soon.  That will be key in maintaining the best care management as the disease process moves forward.  You may want to look into Adult Daycare programs in your area, or to look for a nice "companion" person that can step in and stay with Joan as a "friend" when you need to get out for a few hours for errands or to get a bit of respite for yourself.

 

Do continue to come here and talk with us.  Your challenges will be understood as many of us have faced similar ones and can share our experience and possible solutions.  And if nothing else, this is a great place to share feelings and sometimes just to come and vent.

 

Do let us know how you are both doing, we will be thinking of you and we here  truly care about one another and now that includes you too!

 

With my best wishes,

 

Johanna C.

 

 


Cindysghost
Posted: Saturday, May 18, 2013 2:07 PM
Joined: 2/19/2013
Posts: 167


Welcome to you. I know this is not the place you want to be or ever dreamed you would be. I have said a prayer for you and your LO. As others have said, please come back often. There is a wealth of knowledge here and so many caring people.



Hugs, Cindy


catspjs
Posted: Saturday, May 18, 2013 2:51 PM
Joined: 5/13/2013
Posts: 67


Thanks so much. I was very hesitant to state my exact situation, afraid of being judged. For any that care, the part that some think of as "sinning" has been over for  years. What is left is friendship & a deep commitment. There's a recent documentary that really addresses our issues & I recommend it:

http://stumaddux.com/gen_silent_about.html

 There is still enough of the "real Joan" to provide some companionship, but I deeply grieve what has been lost -- like the ability to share a book, a film, even a stupid TV show & have a discussion about it. One of her latest things is that she will say she has already seen the film or program, when I know for certain she has not, but there is no point arguing about it. Hard to believe she was an adjunct professor at a liberal arts college & also served progressive churches as a pastor. 

 

Joan's children are out of state. They are supportive, but the daughter is raising young children & the son is disabled & has his own problems. I am relying on the neurologist's social worker & our local chapter of the Alzheimer's Assoc. to help me through this. And now I have a new resource -- you all. Thanks again for your caring & your prayers.


jfkoc
Posted: Saturday, May 18, 2013 3:13 PM
Joined: 12/4/2011
Posts: 17267


One thing we all miss is the everyday banter. It makes life very lonely.

You might try talking about non-short term memory things...my husband can still converse about history but not what happened 5 minutes ago.


dfh
Posted: Saturday, May 18, 2013 6:51 PM
Joined: 8/14/2012
Posts: 427


Welcome to our wonderful community. What others have said to welcome you includes me & my feelings.

 

And oh, I do know how you feel because your sounding board & confidant is unable to fill that role. I have this "achy" place that longs for the conversations, the discussions, the differences of opinions, thoughts on books, the news, our family, yadayadayada.............. When the opportunity comes up for me to just chat or talk about "stuff" I almost burst at the seams. We know how you feel, but things will become more manageable. What some of us have discovered is that our LOs really do better when there is a routine. With my DH, it is very rigid, but it does make daily life easier for us both. I wish you well. Blessings, dfh


Mimi S.
Posted: Saturday, May 18, 2013 7:22 PM
Joined: 11/29/2011
Posts: 7036


Welcome Catspjs.

Lots of friendly welcomes and some good advice. You might also want to post on the Younger Onset Board. There is at least one couple there that are struggling with to tell or not.

I have AD, am older and choose to tell immediately. I've never been sorry. When I can't remember someone's name, my friends supply it. I've noticed recently, as my ability to remember names worsens, those same friends don't wait for me to struggle, they just give me their name. I tell them I appreciate not having to struggle.

If Joan says she's already seen a movie, exclaim with happiness: let's see it again. it's worth watching twice.

Do look in your area for support groups for yourself and hopefully for Joan.

Sometimes it takes longer, unless a person goes to the expert to be tested. Bright people are very good at hiding their lapses and using all sorts of coping tricks.  On the other hand, bright patients also have lots of what are called "cognitive reserve" which does help them cope better than the average person.


Can Joan join us on one or both I have AD forums?


aussieZ
Posted: Saturday, May 18, 2013 7:27 PM
Joined: 10/9/2012
Posts: 1361


welcome.  I agree with everything said here.  It doesn't matter who we are, this disease is a journey without prejudice.   And the losing of conversations is one of the hardest thing to handle. 

 

I will add that this site has been so helpful to me.   As my Alan has progressed I have felt stronger and more able to cope because of the prior knowledge gained from those that are further into it than we are.  (long sentence)    So I read it every day.

 

 

 

 

 

 


Johanna C.
Posted: Saturday, May 18, 2013 10:42 PM
Joined: 12/9/2011
Posts: 10049


Well, catspjs, it sounds as though you are way ahead of the curve and are already well connected to helpful resources; that is good.

 

Yes, it is so difficult to lose those threads of mutual memory we all share in our lives with our Loved Ones; so we become their memories for them.  As I found shared memory disappearing, I would have gentle conversations regarding endearing memories which could be told like a story and they were always a positive.

 

You are a loving and compassionate person and a blessing to Joan.  I so wish things could be different . . . . but here we are anyway.

 

Johanna C.

 

 


Sheryl726
Posted: Saturday, May 18, 2013 11:10 PM
Joined: 11/29/2011
Posts: 521


catspjs,

 

Welcome to the most wonderful site.  We are here because this is the only place where the people really understand what we have lost as we deal with this awful disease.  As you see we are not judgemental as we are all in this for the long haul and need all the loving support we can get. 

 

Please share and come to the chat room.  The forum and chat are just such great places and you are able to ask anything because there is someone out there that has done it, heard of it or there.

 

Hugs to you and your LO and so glad you have found this source of support.

 

Sheryl


aussieZ
Posted: Sunday, May 19, 2013 1:42 AM
Joined: 10/9/2012
Posts: 1361


catspjs I just read your message again and realized that you were talking about tips for socialising. 

 

Alan is also dependent and likes to come with me when I go out.  Like your partner he doesn't always make sense and his conversation has many holes in it these days.  He loses a lot of words, which I fill in for him.    I don't want him to look foolish, so I usually tell people quietly that Alan has AD and I sometimes add that he is OK and still able to enjoy people. 

 

It works for us....


catspjs
Posted: Sunday, May 19, 2013 12:12 PM
Joined: 5/13/2013
Posts: 67


Thanks, Aussie. I've struggled with whether or not to share her diagnosis. It's been recent, but for several years I've known something is wrong. What is embarrassing is the occasional inappropriate comment/question, like asking fat women if they are pregnant. I think it would help if peoplle know the situation.
KA
Posted: Sunday, May 19, 2013 4:33 PM
Joined: 1/14/2012
Posts: 9


You are not alone. My partner and I have been together 25 years. She was diagnosed officially in December 2009, when she was 59 years old.

 

We are legally married in our state.

 

It's hard to socialize. Most days it's all I can do to get up and go to work, as I still work full time.

 

The best tip I can give you is to make sure you have the Alz's Hotline number programmed into your cell phone, because sooner or later something will happen that will completely upend you and you'll want to talk to someone who really, really 'gets it.' For me it was the first time I realized she'd forgotten my name or who I was.

 


catspjs
Posted: Sunday, May 19, 2013 10:02 PM
Joined: 5/13/2013
Posts: 67


KA, thanks for the support. Do you have some kind of day care for your partner? I am 73, long retired, & Joan will be 83 in a few days. I actually think I would enjoy having a part time job, but right now it is not in the cards.
catlady
Posted: Monday, May 20, 2013 5:30 AM
Joined: 9/12/2012
Posts: 1267


Have you looked into Adult Day Care for your LO?  You can go and visit them and see what they have. Also, if you call the local Alzheimer's office, they should be able to give you a list of Day Care places and maybe tell you soemthing about them.  I have someone coming in M-F for 5 hours each day because my LO wandered once while I was out.
SunnyCA
Posted: Tuesday, May 21, 2013 1:08 PM
Joined: 2/14/2012
Posts: 1752


Hi, catspjs.

Some of our most respected and beloved members have been in same sex relationships.  I can't recall a single instance of anyone on the boards being critical about it.

Re socializing ... our loved ones certainly can come up with inappropriate comments from time to time.  In my experience, almost everyone realized what was going on and no one ever reacted badly.  Even complete strangers were very kind and patient with my husband. 

If you can quietly explain the situation without upsetting your partner, well and good.  However, if she might react badly, there are "business cards" you can use to notify the other person more discretely.

They are sold in various places on the web, e.g.:

http://www.alzstore.com/Please_Be_Patient_Alzheimer_s_Cards_p/0187.htm

Or, of course, you can design and print your own on stock business card sheets.

Your partner will be less likely to become anxious or behave inappropriately if you limit the number of people with whom you interact at any given time.  The more noise and confusion, the more likely she'll become stressed and act out.

Also, you may have to settle for shorter expeditions, so she doesn't tire too much.  Trying to compensate can be exhausting for our loved ones.

If you're going to eat out, ask for a table in a quiet corner.  That way, your partner can focus on you and the rest of your party, and not be distracted and bothered by strangers at other tables.


joemnc
Posted: Sunday, November 2, 2014 10:36 AM
Joined: 10/3/2012
Posts: 28


Welcome to everyone who is new to any of the groups. I do not really participate a lot in the discussions but I read almost every post, as well as the replies.  It is a great release for me. Often times when I'm having issues sleeping because I just cannot get my brain to relax, I will come here and read. It helps knowing you are not alone.  

 


joto815
Posted: Saturday, January 30, 2016 11:29 PM
Joined: 5/15/2015
Posts: 13


It appears that few have posted here in recent years. I hope this board is still being read.. 

Greetings all - it's great to see such a relaxed and open discussion about ALL of us impacted by ALZ. My lover died in 1990 from AIDS-related dementia. Marriage equality was just a faint glimmer on the horizon; we scarcely discussed it. In his final days, I was barred from being with him and denied any opportunity to grieve and celebrate his life publicly. These many years later, I am still on my own and I am now facing a dementia: younger-onset ALZ. The symptoms began to emerge slowly and insidiously around 2010. Today my career is kaput, most of my closest friends died decades ago or have disappeared over the last few years as my personality began to change, and I face a rather terrifying future mostly alone. Now that I know what my disease is and am learning how to more carefully interact with others, I am doing what I did after 1990 - I am simply trying to move ahead, once again into uncharted waters. I fear after having survived the early AIDS epidemic and then managing to put my shattered life back together, I may be uniquely challenged - or well-equipped - to face younger-onset ALZ. Here, I hope to connect with others who can not only sympathize, but possibly relate to something like this. Cheers!


LCabrera
Posted: Wednesday, March 9, 2016 3:03 PM
Joined: 1/12/2016
Posts: 1


Good day to you all - we are working to offer better education and resources for LGBTQ members of our community.

Next month we are offering a presentation for family members and residential care facility caregivers. Our focus will be on identifying barriers to care (real and perceived), sharing available resources and inspiring respectful, person-centered care without regards for sexual orientation, gender identity, etc.

Have you any insights you would offer? Words of wisdom? Experiences you'd like others to learn from?

Thank you in advance - Lynn from the Montana Chapter of the Alzheimer's Association.


MichelleO
Posted: Sunday, March 13, 2016 7:22 AM
Joined: 4/7/2015
Posts: 482


Western chapter of NC ALZ assoc is having LGBT conference April 13 from 8-12. See their calendar.
AFF1
Posted: Wednesday, August 17, 2016 2:26 PM
Joined: 10/29/2012
Posts: 22


Welcome, catspjs,

Here is a link to one of my recent blog posts on keeping my wife occupied at a restaurant. https://wordpress.com/post/alzwife.wordpress.com/829 

May you continue to find strength and community here and elsewhere.  AFF1 (aka alzwife)


Wommant
Posted: Thursday, September 15, 2016 11:19 AM
Joined: 9/8/2016
Posts: 45


Welcome, I'm a newbie too, it's a good forum and I really hope that you'll find here some help and support!
stormycloud
Posted: Monday, September 19, 2016 12:38 PM
Joined: 9/19/2016
Posts: 3


HEllo, I'm in a same sex relationship but the person I am taking care of is my mom.

MY g.f understands but she also takes care of her dad.lately it has been very stressful

NOt sure if this is what you wanted to hear I guess I am just venting . I just joined this site so just sharing a bit.

TThi


Mimi S.
Posted: Monday, September 19, 2016 6:33 PM
Joined: 11/29/2011
Posts: 7036


Welcome Story Cloud. We're so glad you found us. This particular site doesn't get a lot of postings.  People do read and respond.

Do browse the other sites on the Boards.


gloomysurprised
Posted: Friday, October 13, 2017 11:49 PM
Joined: 10/13/2017
Posts: 4


Well said, Sir! Salute!