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Support for LGBT spouses

kscroce18
kscroce18 Member Posts: 8
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hello, my wife has recently been diagnosed with EO. Anyone know of any support sites for LGBT spouses? Thank you.

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  • Jgirl57
    Jgirl57 Member Posts: 481
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    Welcome! I am sure you will find help and support here .

  • harshedbuzz
    harshedbuzz Member Posts: 4,410
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    Hi and welcome.

    In addition to us, this organization offers support and advocacy for LGBTQ+ seniors. I don't know if they offer anything dementia-specific.

  • kscroce18
    kscroce18 Member Posts: 8
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    Thank you. Yesterday was our 25th anniversary. I work full time, and she is unable to drive, so I'm concerned with the amount of time she spends alone. She is young, so most of what I have found is for older people with AD. Any suggestions?

  • M1
    M1 Member Posts: 6,788
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    look into day programs or a home companion. Happy anniversary….

  • Karen711
    Karen711 Member Posts: 76
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    Happy Anniversary! We'll be having our 42nd in August. I'm working on the same problem. My wife feels like she has "nothing going on". I take her with me everywhere I possibly can, and we have friends that invite us to do things fairly often. But I'm very aware this is not enough for her. She thinks I'm gone all the time because I keep myself busy in the house with projects. I do have two regular appointments I go to every week (therapy and PT), plus I hike in the hills around our house many days of the week which she no longer can do with me. These activities are my refuge. Sometimes she thinks I'm having an affair somewhere (not so). She has anosognosia so I am having a very difficult time figuring out how to get help in the house. I mentioned to her I wanted to have someone come in and help us a couple of half days a week (I caught her taking one of the dogs out for a walk without a collar and leash!), but she became angry and suspicious I'm using it as a way I can get out more (true). For the first time yesterday she gave an indication she'd consider going to the local senior center where they offer a variety of classes. I'm afraid she may not be able to really participate in those classes though. I plan to speak to someone there this week to see if they have any suggestions. She was a high level executive in a creative field and it kills both of us that now she spends much of her day watching tv, watering the garden, and doing laundry (one towel at a time sometimes). In my effort to try to take care of myself for the long haul, I feel like I am failing her, yet she is so very resistant to help. She just wants to be with me. There was a recent post here discussing possibility of starting a conversation for middle age caregivers. Try to find it. There may be some good ideas there!

    Best Wishes to You!

    Karen

  • HollyBerry
    HollyBerry Member Posts: 177
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    I thought I remembered a subgroup for LGBT spouses but it seems to have disappeared. Strange. It didn't have much traffic.

    We putter along like everyone else I guess, but one thing I will bring up: I've visited 3 memory care facilities recently and did a hard read on the reaction I got from the salesperson. One seemed unsure of how to ask about finances, another was completely unresponsive, and the third was more "we've got this," which isn't a big surprise since they make a big deal about all the University people who live there. I'm still processing.

  • Karen711
    Karen711 Member Posts: 76
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    Hi HollyB-

    Can you talk more about your experience interviewing mc? Are you saying you felt they were uncomfortable because you are LGTBQ, or for some other reason? Not sure about the context of your comments. Curious though.
    thanks,

    Karen

  • HollyBerry
    HollyBerry Member Posts: 177
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    Karen - I was listening for any awkwardness around a LGBT couple at a MC run by a religious organization. I didn't expect problems, necessarily, but since we've never been Lutherans I wasn't sure what to expect. The upside of this particular place is it has a huge endowment and a fund to support long term residents if their money runs out, which is why we moved my mom there (years ago). I also visited a smaller facility in a smaller community outside the city. I figured if I got a clearly negative vibe, I could walk away and save the effort of completing the application. It is a conundrum, I guess — if I look at places in or near our university city, they cost more and are more likely liberal minded, at least at the administrative level; outside the city or outside this county, costs are less, staffing is different and the political climate is different in rural areas of this state.

  • Karen711
    Karen711 Member Posts: 76
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    Thanks, HollyBerry!

  • LarryJay
    LarryJay Member Posts: 3
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    I am pleased to meet you, kscroce18. I've had a nearly 20-year trek with this killer disease and nearly as long an association with the Alzheimer's Association, where I've met the most wonderful, loving, and helpful People. My husband was diagnosed with Early Onset at age 54 he's now 72 and in long-term care. I'm not aware of a gay-related forum here. However, there is probably little need for one as any issue can be addressed here. I believe the discussions can be searched. Of additional concern are an interracial couple. I saw no reason for concern and there was none.

    Many services you will need to source will depend on your location. AA has a huge database of references. In addition to that the forums offer information, encouragement, and a needed shoulder.

    Welcome,

    Larry

  • JiminTexas
    JiminTexas Member Posts: 26
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    Oh my God Larry. 20 years. You humble me. I've only beeen at this for about 3 years and am struggling. You are a real hero my man. Bless you.

  • CindyBum
    CindyBum Member Posts: 270
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    Welcome ksc and so sorry you are joining us on this painful journey. You are not alone here in being LGBT, even though there are no special groups for us. I have felt nothing but welcome and support since I first posted, because as others have said, this disease does not care who we love.

    If you feel the need, though, feel free to reach out directly to me via a message.

  • kscroce18
    kscroce18 Member Posts: 8
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    WOW.. 42 years! Congratulations. It sounds like we are in similar, yet different situations with our wives. Mine used to paint, so I signed her up for some classes and it lasted a week. She is really struggling with her vision. She is plenty busy in the summer with the gardens and such… I'm very worried once winter rolls around. We live in Maine. Thank you for responding. It is so hard to be a part of this. One day I'm hopeful and the next I read people's stories, and it is devastating.

  • kscroce18
    kscroce18 Member Posts: 8
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    Larry, I am so sorry. I can only imagine what the last 20 years have been for you. You must have an angel watching out for both of you.

  • Iris L.
    Iris L. Member Posts: 4,362
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    Regarding: "she is really struggling with her vision". In addition to any of the many eye problems that older adults may be subject to, PWDs develop agnosia. This means they no longer recognize or "see" what is right in front of them. This is a brain problem, not an eye problem , so glasses don't help.

    Iris

  • kscroce18
    kscroce18 Member Posts: 8
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    I guess I should have worded that differently. Her vision is perfect, but she does have agnosia.

  • elmay
    elmay Member Posts: 1
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    I'm a married lesbian. My wife has MCI and we're waiting on a neurology consult.

    The Alzheimer's society of the UK has a site on LGBTQ+ Living with Dementia that you might want to check out. (https://www.alzheimers.org.uk/get-support/daily-living/lgbtq-living-with-dementia). The site listed several issues that hadn't occurred to me.

  • allit
    allit Member Posts: 88
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    welcome! my wife was recently diagnosed with EO too. our neurologist office gave us a list of resources. one is the Duke Dementia Family Support Program. they have a few support groups. we joined the one for EO and we've felt welcome there. they are on Zoom so basically accessible wherever you are.

    https://dukefamilysupport.org/support-groups/

    we haven't looked for any LGBT specific resources yet. but i can say, it's always nice when we know there are others like us around. so far, where we live, we've felt pretty comfortable. but we're always a little more vigilant when we travel too far from home. been wondering how we'll feel about things when the time comes for stuff like MC and assisted living facilities. but for now, we feel ok with support from family, friends, and coworkers.

  • LarryJay
    LarryJay Member Posts: 3
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    Hi Jimintexas,

    Sorry, I'm just getting back to you. I appreciate everything You say. Sometimes it's hard to get to this page. I've almost lost my sweety. He's been in care for the last 10 months. I see him as often as possible and like to give him a shave when I'm there. Sadly sometimes I have to advocate loudly. But that's how it is. Don't hesitate to get in touch with me if you ever need to rant, a shoulder, or just info.

  • LarryJay
    LarryJay Member Posts: 3
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    Hello, gay-specific facilities and groups are hard to find. Probably has something to do with the numbers. That said, we've had no problem getting medical and social services. In fact, I was, am, constantly on the lookout for that kinda thing as we are also a mixed-race couple.

  • Crushed
    Crushed Member Posts: 1,455
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    Sincerely hope you like this story

    I was in a support group that had one gay female member. We also had an older male member who we called the Deacon since he was very formal, wore a suit and tie and insisted on the utmost propriety.
    Our Gay member Susan kept referring to her "partner" Alice . One day the Deacon asked " Susan you keep calling Alice your partner, you mean you are not married?" "No" Said "Susan Alice did not want to get married" The Deacon raised his eyebrows and said "you mean you are living in Sin !!" It took about three seconds for the joke to register and then the group collapsed in laughter.
    We got nothing else done that day

    Everyone deserves the best support possible

  • Donr
    Donr Member Posts: 183
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    It did take a while for me to catch the humor. Nice hearing from you

    Don

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more