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 Love/Sexuality: how to respond? 
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Joined: Mon Mar 24, 2014 9:53 pm
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Post Love/Sexuality: how to respond?
Hi--

This is my first time posting. I am not a caregiver but have a long time, long-distance romantic relationship/deep friendship with a person in her early 70's who I am coming to suspect (strongly) may have LBD. She lives across the country, and I see her five or six times a year for three or four days at a time.

I do not notice cognitive or language problems--she is very bright and highly educated, but sometimes she seems a befuddled in terms or making plans. I don't see her in situations where she has to do a lot of analytical thinking. On recent visit, she had visual hallucinations, and extremely vivid dreams in which she flailed around. She also told me she has started to have excruciating leg cramps. She's also become much more emotional and romantic--clingy, which she has never been before. . She has no history of mental illness that I know.

We are both windowed. She has no close family. She recently had a medical exam, and they didn't find any problems--stoke, etc. Am I being an alarmist? How could I broach the subject?

Also--embarrassing--she's become VERY sexual. It is not unpleasant--in fact, some of it is nice--but it is out of character, and kind of obsessive, not only in person but on the phone, etc. A few people on the board have said they noticed this in men but have not seen anything on women. I do not know how to manage this. I know she would be devastated if I broke off the relationship entirely, but I do not want to do anything to harm her if she does have dementia. I'd appreciate any thoughts or advice. Thank you.


Thu Mar 27, 2014 1:36 pm
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Joined: Mon Oct 01, 2012 11:24 pm
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Post Re: Love/Sexuality: how to respond?
Grenda- thank you for your post. I am confident that you will receive the necessary support you need from one of our members.

Thank you for reaching out to LBDA.

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LaToysa Scaife-Rooks, MPH
Lewy Body Dementia Association (LBDA)
Volunteer and Program Coordinator


Fri Mar 28, 2014 10:24 am
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Joined: Mon Mar 24, 2014 9:53 pm
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Post Re: Love/Sexuality: how to respond?
Hi, All--I posted a question about my friend who I suspect may have LBD and got no reply, and hope someone can help me--has symptoms like hallucinations--she saw the wings of an angel leaving her room--sleep trouble,lots of napping, very bad leg cramps, and sexual language not usual for her. But do not see to have cognitive problems. We have a good long distance relationship--I'm widower and she's windowed. She has no close family. I am at total loss as to what to do.

She recently went to the doctor for regular check up and he saw nothing wrong, but don't think she told him all these things that I'm piecing together. How can I talk to her about this and help her find a suitable doctor who will check it out thoroughly? I tried to talk about seeing the angels, but she is very religious, got upset when I suggested they might be hallucinations--and who am I to say she's wrong?

Appreciate any help. Thanks.


Mon Mar 31, 2014 2:09 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3306
Location: Vermont
Post Re: Love/Sexuality: how to respond?
It is hard to deal with this from far away, and also not being a family member. I don't know how helpful this will be but here are a few suggestions:

1. Make a list of symptoms that you see and send them to her dr.
2. Ask for her to give permission for you to communicate with her dr.
3. Don't expect her to understand or accept her symptoms - to her reality is one thing, to others it is something else. Her disease will probably not allow her to see what you see, and also most people are in denial about what's really going on, so don't expect her to agree with you.
4. Go to her drs. appts. with her.

Without doing the above, I don't know what else to tell you, unless she has close friends or family you can communicate with and hope that they will do what's in her best interest. This is a very difficult situation for sure.

Re: the overly sexual conversation I don't know what to tell you. It sounds like one of the many symptoms that can happen and you have to figure out what you are comfortable in saying to her. Good luck and let us know what's happening. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Apr 01, 2014 8:03 pm
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Joined: Sun Mar 30, 2014 5:11 pm
Posts: 71
Location: IL
Post Re: Love/Sexuality: how to respond?
Grenda, with LBD the behavorial changes typically precede the cognitive ones. My mother had LBD, and untypical behavior, in retrospect, started a few years before she was officially diagnosed. My mother, who was modest and generally reserved about sexual matters, started talking more about sex, such as clients in her adult day care center were having sex in the bathroom. The sex talk was practically daily, as she was in adult day care 5 days a week. I was surprised. This talk continued and intensified over time. Since she was a widow, I was glad that she was interested in having a boyfriend and wanted to "cuddle up" with him. But, in hindsight, her talk and behavior were highly unusual for her.

I suggest not arguing with her about her hallucinations (which is much easier said than done). They're real to her. As mentioned in one of the books on LBD, if they're pleasant ones, why deny her enjoying them?

If she's not already seeing a GERIATRIC Internist, then I recommend that you help her find one ASAP. General internists, as the very fine one my mother had, may and do miss the symptoms of DBD or other age-related health problems. The Geriatric Internist will rule out reversible health problems which can cause dementia symptoms.

If she is already seeing a Geriatric Internist, then she should request a referral to a neurologist who will take a thorough medical history and do a neuro exam. He/she will also use various tests to thoroughly investigate your friend's signs and symptoms. She is going to need your help! Good luck!

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AnneA -- Forum Moderator; also daughter, caregiver, and patient advocate for Jean, who died of LBD in January, 2013, at age 91.


Fri Apr 04, 2014 9:16 pm
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Joined: Sun Apr 13, 2014 9:32 pm
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Post Re: Love/Sexuality: how to respond?
I have a similar problem with my husband who thinks that women are trying to "pick him up"--we recently had problems with a caregiving agency because they said he was making inappropriate remarks to the younger caregivers, yet when I would return home, his view is that they are the initiators. Even with me, his preoccupation with sex makes me very uncomfortable and frankly I have about zero interest in it anyway as being his caregiver has pretty much wiped out any romantic interest I had in him. we have only been married two years, he is 17 years older than me. I am still very active and am working, very able to do what I want to do. He is no longer the person I thought I married. it is devastating.
E


Sun Apr 20, 2014 3:00 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3306
Location: Vermont
Post Re: Love/Sexuality: how to respond?
I'm so sorry for your situation, Elizabeth. That is so sad that you've only been married 2 years, and now both of you having to deal with this devastating disease. Life can be so unfair sometimes. Has your husband's drs. given you any ideas about this particular issue? I don't know what some remedies might be, but it's probably at least worth discussing this with his drs. All the best to you, big hug, Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun Apr 20, 2014 3:08 pm
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Joined: Sun Apr 13, 2014 9:32 pm
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Post Re: Love/Sexuality: how to respond?
Hi,
I talked to our PCP about it today and she told me that he has said really inappropriate things to her as well, we are attempting to get into a new neurologist in the next months and she said that is a definitive symptom and to make sure to mention it to the new neurologist. It is very discouraging and somewhat embarassing as he has no idea he is being inappropriate, and then denies the behavior...of course because he doesn't remember it...
Elizabeth


Tue Apr 22, 2014 7:12 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 230
Post Re: Love/Sexuality: how to respond?
Hi Elizabeth, I think it's important to remember that everything about our bodies is controlled by our brain. And when Lewy hits the brain, depending on what part is affected, any kind of behaviour can come out. So remember it's just the disease, not your LO and definitely tell the doc as it can definitely be a symptom of brain change/malfunction.

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Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Fri Apr 25, 2014 12:43 am
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Joined: Tue Oct 09, 2012 11:29 pm
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Location: North Bonneville, WA
Post Re: Love/Sexuality: how to respond?
Thank you for bringing up this subject. I feel a bit disloyal talking about this intimate business, but am just struggling. For several years at what I believe to have been the beginning of his LBD symptoms, My husband lost all interest in sex, and I just kind of gave up. In the last year, he has become obsessed, in spite of the fact that he, um, has been unable to really perform. He is very upset by our lack of intimacy, and has occasionally accused me of refusing to be with him, which is entirely untrue. He is usually very loving and needy, telling me constantly how much he loves me, but paranoid that I don't love him or will leave him.
He is planning to ask his doctor for medicine to help him to have sex. His neurologist told him it would be fine. I just need to get past my feelings-
First, I am smack dab in the beginning years of menopause, going through all kinds of symptoms around it. Sex drive has diminished.
It is hard to feel intimate with someone when your relationship has evolved into a caretaker/patient model which feels almost parental at times.
He has lost so much weight and I have gained so much, that I feel ungainly and ugly, and less attracted to him because of his skinniness. He seems so frail.
We aren't all that old, it doesn't seem like sex should be over for us at this stage of the game. How do I get MYSELF on track?
If this subject seems inappropriate, I am happy to delete it. I'm not a person particularly comfortable about sharing such things with others, but it is causing me all sorts of guilt and grief. Thank you

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Diana (53), married 32 years to Mike (57). His symptoms started probably around 2008, we started knowing something was for sure going on in 2011. LBD dx made March 2014.


Sat May 24, 2014 12:16 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3306
Location: Vermont
Post Re: Love/Sexuality: how to respond?
There are probably quite a few people who are having the same issues and are just afraid to bring up the subject! I think you all are brave to have this discussion and I hope you are able to share some helpful thoughts and ideas with one another. I don't know what I'd do in this situation, but I can only imagine that sexual intimacy with someone when the roles have changed so much, would be very difficult and not very appealing. Best, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sat May 24, 2014 3:46 pm
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Joined: Sun Mar 30, 2014 5:11 pm
Posts: 71
Location: IL
Post Re: Love/Sexuality: how to respond?
Thank you for writing in, ddaschel. There is nothing inappropriate about wanting to discuss sexual issues and LBD. Sex is a normal and often integral part of people's lives. As Lynn pointed out, others are having these very same problems and are probably grateful that this topic has been brought up. Hopefully, they will write in and you can continue this conversatio, perhaps more privately if you wish. Sincerely, Anne A

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AnneA -- Forum Moderator; also daughter, caregiver, and patient advocate for Jean, who died of LBD in January, 2013, at age 91.


Sat May 24, 2014 5:16 pm
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Joined: Wed Nov 13, 2013 3:30 pm
Posts: 46
Post Re: Love/Sexuality: how to respond?
ddaschel - I'm almost identically to where you are. My husband is only 53. LBD hit him like a ton of bricks in April 2013....Officially diagnosed last October. However, for the past 12 years, we've had virtually no sex life. He had no interest at all. Did the testosterone tests, saw a counselor, etc. Nothing. He'd meet my need, but that was it - Totally one sided. Now we know it's been the LBD talking all along.

Now that we're a year into this journey, he's changing a bit. He has a bit more interest every now and then but, like your husband, can't perform. I just take those times of intimacy as very precious and enjoy them. He's giving me a gift in a way he can at this time. That's the closest we get to romance and I'm thankful for it.


Tue May 27, 2014 1:51 pm
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Joined: Sun Jun 08, 2014 11:24 am
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Location: Locust Grove, Ga
Post Re: Love/Sexuality: how to respond?
What a hard issue. My husband was diagnosed just about a year ago. But as I look back we have had many severe personality changes over the last 5 years or so. During that time he has struggled with the ability to perform. I have done my best to help meet his needs but in the last year he is totally unable to perform and becomes more and more agitated with his inability. He pushes things to the point of hurting me so I've put a stop to sex altogether . Not only is it hard to get romantic when pain is involved but I am married to a complete stranger. Nothing about him is the same. I keep looking trying to find just a glimpse of the man I've been with for 39 years.. But he is gone. He feels I am rejecting him because I won't give in, and I can't explain it to him because he can't see it. We have his view of reality and mine. This is so hard. I sure never pictured our lives this way. We re-play this subject at least every couple weeks with him always getting angry with me for rejecting him. The record just plays over and over again. I wish there was an answer.

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64 year old wife of Tom, 72, who was diagnosed LBD a year ago.


Sun Jun 08, 2014 1:39 pm
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Joined: Sun Mar 30, 2014 5:11 pm
Posts: 71
Location: IL
Post Re: Love/Sexuality: how to respond?
Hello, Dubbyde, and welcome to the forum! I'm sorry for what you're going through with your husband. The personality changes are hard to accept. Before we had a LBD diagnosis for my mother, I can remember asking her, "When did you become so mean?" You will find companionship here and useful strategies to try at the various stages of LBD. You're not alone!

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AnneA -- Forum Moderator; also daughter, caregiver, and patient advocate for Jean, who died of LBD in January, 2013, at age 91.


Sun Jun 08, 2014 7:54 pm
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