I visited this site last night to see how all of us are doing and there was someone new. She claimed to be an Alzheimer's spouse, but she seemed to be more concerned about her failed attempt at infidelity, her disappointment over that, and how lacking her husband was in the intimacy department. Her husband was just her husband, but the boyfriend had a name. I got a little hot and tried to nicely but clearly state my opinion on that and I apologize if I offended anyone. We are all lonely and miss the people our spouses were, but we are all devoted to them. We all know that the action in the bedroom is declining and may even be non-existent, but that is what happens. We love our spouses no matter what and if anyone has found comfort elsewhere, it has never been something that has not been aired on this site. In spite of all we go through we still have dignity and class. This site is somewhere I come for advice and cameraderie and hugs and prayers when I need them. Help me out, Joan. Was this the intent? I love you guys, but does there need to be a line drawn somewhere? I really would like to know. I, for one, love my husband and need to be with him. This was our pact. And that pact does not morally expire until he does and then I will be alone until I choose to do otherwise.
Hi Linda-- I think that there have been quite a few discussions since this site's inception about how various ones of us feel about whether we "would" or we "wouldn't," prior to our spouse's physical death. While there's no rule that we have to have a consensus, the general consensus still SEEMS to be that--among the "woulds"--this isn't somewhere we'd even go when our spouse's cognitive status still allowed for comprehension (and therefore hurt.)
Sometimes we express things like how, in our loneliness as AD spouses, sometimes just dinner and conversation would be welcome.
I think one of the most important principles we've tried, as a group, to uphold is to try to understand where others might be coming from, respect that our choices might not be the same, and reserve judgment, because who needs extra judging in this game? We're hard enough on ourselves.
And yes, we've definitely discussed the pain of the loss of the physical side of our relationships!
Anyway, I get what you're saying. But as for line-drawing? I don't know...I think the post you're referring to was at least honest. I hope the writer was able to benefit from the feedback offered. But as I said, it would be impossible for us all to have exactly the same moral underpinnings, or to always make the same ethical choices about anything...and not merely about sex.
i agree with emily about non judgement of those who opt for an extra marital relationship. while most here have said it would only complicate matters and add to the anxiety and stress levels, some may need to escape the AD world and find some normalcy outside the marriage. there are a couple here who have also stated having a 3rd person in the mix to help them cope. i brought that topic up to the top for review. its been said that we should not judge those who choose to post their concerns but to support them and offer any constructive advice. it would take alot of honesty to post about an affair in my opinion. i think this lady has had a change of heart and is now out of that relationship and realized her ethical issues and has chosen to continue care for her DH. if there is to be line drawing then i would probably be the first to go, as some of the horrific issues i have dealt with would be quite disgusting to many. we post our thoughts in hopes that our own situations may confer with others who are going thru the same and can find comfort knowing they arent alone. i would hope everyone feels comfortable enough to post whats in their hearts and if some may find the topic offensive others wont. thats the beauty of this site is to pick and chose what makes sense to you alone. divvi
One thing that was not mentioned is age. It seems we are getting more and more younger spouses on this site. Maybe because of the age of a spouse it makes a big difference in how they feel and/or act regarding this area of discussion. It must be more difficult if a person is in their 40s/50s then for a person in their late 60s,70s or 80s. Personally, I understand both sides of this dicussion and I see no problem with some expressing their problem as they see it that has added to their burden of caring for their spouse. Others have financial problems or problems with their children or their spouses children/families and we try and help them and others that have problems that have added to their burden.
This is a hard one. I am 52 and DH is 60. When he was dx 2 years ago I hated him. I was ready to leave. But after the dx it all became clear to me. The 10 years before the dx were one of a living h***. Never knowing why he was so angry with me. And why he hated me so. If I had found someone in the time before the dx and the 6 mons after I may have fallen for him. I was lonely. Now I see what was going on and it was the AD that made DH the way he was. Now I would not look at another man. I could not risk hurting DH. But as you can see at that moment in time, I could have had someone on the side. I try not to judge, I have not walked a mile... We all see things differently and we all come from different places. In the end, we all get hurt and are lonely. I know it is one of the hardest parts of this for me.
It is funny this came to the top right now because just yesterday I got a letter from my gyno asking if I would make an appt because it has been over two years since she has seen me... Then I sat thinking my ladyparts may never been seen again. I was sad but too tired to be too emotional about it all. I haven't been to see her because I have been so busy getting my dh retired, soc sec, insurance, dr appts now he developed this heart thing so tomorrow he gets an angiogram. I will make my appt with the gyno but with sorrow....would I like to meet a new man. Only if he knows how to wield a chainsaw, mower and be able to cook. Hahaha. It does get lonely though and when my dh was in the hosp recently with heart and kidney failure my 9-yr-old granddaughter said "Oh grandma now you will die alone..... well most women do you know." From the mouths of babes. Being in my 50's makes me realize I may live through this but it also makes me realize I don't want to do it all over again.
Linda, I get where you are coming from and it is perfectly fine that you feel that way. Likewise, it is also perfectly fine for others to feel differently. Joan's site is a safe place for all of us. We try not to judge but rather offer support. For though we are all on the same journey, not everyone is taking the same path. The world is full of people who knock us down, so here we try to lift each other up. We talk about things that others simply wouldn't understand. We talk about intimate things that make some uncomfortable.
There has been some threads here about others finding a new relationship. We have talked about it a lot actually. Jan's Story is a book written by Barry Petersen about this very topic. He did find a new love, yet his wife still remains the focus. He still loves her, treats her with respect and visits her. It is a very touching story. At least, in my opinion.
I am 44 and would never dream of seeing someone else. Lynn is still my husband and I still love him deeply. So, I don't think it is age..... I think it is maybe more about what kind of relationship you had prior to Alzheimer's... and possibly some people can not handle the depths of loneliness? Whatever their reason, if they choose to “add” another person to the relationship, that is their choice and I wont judge them.
This is the one safe place I have. I know I can come here and “talk” about anything! I know I wont be judged and I know someone will respond with support and compassion. There will be posts that bug us for varying reasons, instead of drawing that peripheral line in the sand, I think it much better if we just ignore the threads that personally bother us.
There are many of us here, there will always be just as many opinions. That is a good thing! Now, time for a group hug :D
Let those that are perfect cast the first stone. Reducing people who says things we don't agree with to charletons (she 'claimed' to be an alzheimer's spouse) isn't great form. Just a bit of research reveals that virtually everybody here puts their own judgements aside of what other's are doing and tries to lend a supportive ear or offer advice. Not start a thread suggesting we dictate behaviour because something that has been said goes against our own beliefs.
Selectivity of boundries is personal. So you are offended by all those here (because unknown to you this topic has come up numerous times given the emotional hardships of this disease), who have sought emotional or physical contact, having made up your mind that this has never and should not be discussed. Both of which are wrong.
It's no suprise to me that someone who thinks it's alright to tell someone expressing their pain that they sound like a little girl and need a psychiatrist just because they crossed one of our personal boundries, then starts a thread wanting to dictate those boundries onto everyone else.
If we cannot offer advice or empathy because the topic offends us, the wisest course is to say nothing because the only thing we agree on is that we come here for 'advice and cameraderie and hugs and prayers'.
As for offending, I can offer that my response here is exceedingly restrained. But I do apologize to everyone else because even though I also want to help dampen any conflicts that arise for the comfort of everyone - I must speak up.
I personally agree that I will have no contact while I am married whatever the situation. I am also empathetic and truly supportive of those who do. And I am ready to listen to their internal conflicts and try and find a way to help them through regardless of whether that is lonliness or poop on the ceiling (oh yes it was!).
Joan works hard to offer a safe community to a group in great need on topics they search for and with as much freedom as possible. We should all work to respect that others think in ways we do not while some are exactly like us and in that there are few places that come closer to that on this planet than the house that Joan built.
I cannot find the thread and comments to which you are referring. However, most everyone in this thread has said what I would say. But here is my policy and opinion directly from me.
I started this site because no where else could I find the honesty I was looking for. No one talked about how Alzheimer's Disease affected the marital relationship - emotionally, mentally, and yes, physically. What this disease was doing to my husband and my marriage was eating away at me, and there was no one talking about it. As I said in my very first blog, all we ever saw about marriage and AD was Nancy Reagan looking up adoringly at her husband. I wanted and needed to talk about the truth - the rages, the personality changes, the temper tantrums, the verbal assaults - the change in my feelings due to the changes in HIS brain.
It has been my choice from the beginning to allow topics of discussion that are taboo elsewhere, as long as they are treated with respect and dignity on both sides - meaning the person writing is honest and does not use crude language, and those reading and responding agree or disagree respectfully without judgement. It is due to these guidelines being strictly enforced by me and my message board monitor that have allowed these discussions to take place.
It is certainly your right to disagree with the person you mentioned, but we cannot be their judges. We all feel differently and react differently to situations in which this disease thrusts us. I disagree vehemently with some of the opinions expressed here, and I whole heartedly agree with others, but I defend the rights of everyone to express those opinions - as long as it is done with respect.
We monitor the board constantly, and will remove any post considered offensive, argumentative, or preachy. Somehow, my MBM and I missed whatever post you are referring to. Please direct me to it.
In reading Linda Mc's comment to sarahlynn, I don't feel it was disrespectful. Maybe I would have phrased it differently, but the fact is that sarahlynn (and I will write to her personally) is very confused and not yet fully educated about Alzheimer's Disease. I would recommend contacting the Alzheimer's Association for a support group and information about the disease.
Thanks, Joan and Nikki. I was not trying to judge or be rude. I just thought that Sarahlyn sounded very confused and needed help focusing or prioritizing. I consider it a blessing that I am not drawn in another direction. Lloyd is who I want to be with and I don't love him less because he is sick.
Nikki, it sure does!!! I guess I was just irritated because the other person seemed more interested in the affair not working out than the spouse. And then...I just need to learn to shut up. I feel sorry for anyone in this situation with someone who isn't the loves of their lives.
It's almost impossible to do Alzheimer spousal caregiving when the person IS the love of your life. I can't imagine doing it for someone with whom you had a lousy marriage. I don't know if I could do it. The memories of who he was and the wonderful life we had together keep me going. Without that................I don't know.
It is amazing how different people handle situations. I certainly understand how you feel, however I feel differently. The love of my life is now dead and the last years I spent with him was a living hell. He was ill with a rare vascualar condition involving his stomach and was in constant pain which resulted in an addiction to vicodin and booze. I finally left him when I realized my own health and emotional welfare were at stake. I am glad I had the experience to be married to the love of my life and it broke my heart to leave. I still think of him often and think about what could have been, but wasn't to be. Years later I married my present husband who is not and never will be the love my life, but he was a wonderful fun filled easy going person who treated me with respect and a sense of freedom which I never had with the love of my life when he was well. There is so much emotion involved in caregiving with a long term love of your life relationship. Now, I am once again a caregiver with my dh.
As difficult as this job is it seems to me to be easier then when it involved the "love of my life". Maybe it is because I learned how to stand up for myself and by myself and I now know that there is no if, ands or butts, about who is in charge and care will be on my terms. There is a small, but certain detactment when the person is not the "love of your life" which makes the difficult decisions regarding this condition easier. My experiences are probably unique and strange to some, but it has worked for many years now. And, I do love my dh and I know he loves me...but, it is just now the same as the love of your life. I always tell others that have known both "the love of my life" and my present husband....God knew I was a good caregiver, that's why he lead me here and I will do my very best for my dh.
I agree with Linda and the others. There have been discussions on going out, socially now and then, and even finding a friend on the threads here..no one has sat in judgement of anyone who finds a companion to share some of life's interests..but the intimate details are not public discussions here and the post you refer to, Linda, read more like it was for Dear Abby. I found it uncomfortable to read the details of the relationship and frankly I didn't like it. I do think you provided a good suggestion, to seek some counseling in regard to this subject for those who feel the need to have companionship apart from the spouse when we are troubled about the rightness or wrongness of it. I do not thin it is up to those of us here, to help sort out the ins and outs of the details of a particular relationship, however.
While we are at it, I also posted a comment on that thread about a sermon last night at Mass which I hoped would help us sort of see through the hard aspects of these relationships that are going to change over time. It is a hard road to be sure but it takes a certain sort of selflessness to do this job..doesn't mean we get it right all the time...we don't...but we try and we try out of love for our LO...especially when we go through pictures and see the us we used to be and recall the warm fuzzies we had then...somehow the tenderness, love and even sadness comes to the surface and we go on, some how we go on.
Interesting Judith. I don't think your experience is strange, just unique to you. It does make me wonder if my suspicions are correct in that a person can only have one "love of my life".
I do feel the same as Linda and Joan. Without the wonderful years of love to reflect back on, I don’t believe I would have survived this far. I draw immense strength from the love we shared. If the relationship was bad to start with, I truly don’t know how people manage.
These posts remind me of something I once heard someone say, " If you have a problem with your man, you don't go out and get another man. Because then you have two problems". Made me think.
Yes Nikki....I do believe you have only one "love of your life"....and some might ask how do you know? I think you know because the feeling is so special and so intense compared to your feelings towards any other person...you just know. I too can understand how you draw on that strenght from the love you shared then and now. However, for me, it was a matter of my survial when he kept refusing to get help for his problems...and a very difficult thing for me to move on.
i will not be back on this site again , cause i have learned one thing somebody is going to get upset no mater you say or do . but i wont to say , i never said i was having affair. and i do love and care for my husband if i did not, i would not be married for 25 years will be in june . and thank you for the ones that did listen.
Sarahlyn, I hope you get things sorted out and come back and let us know how you are doing. This is a good place to visit and there will always be people who agree and disagree with you. I just wish you would be comfortable enough in your own skin that other people's opinions would not bother you. May God be with you.
sarahlynn48, don't leave us. As your DH progresses you will have a multitude of questions, most, if not all, of which have been answered on this site. You, me, us, cannot please everyone, nor will everyone agree with us. You are entitled to your opinions and emotions. Just take what you can use here. This road is rocky and hard but we will be here to help each other along. Bless you - and hugs to you.
Sarahlynn, we are raw and our feelings get hurt. I have had it happen too. Please don't let one incident keep you from the loving, compassionate support you will find here. We are all different, we have our own views and opinions, there is room for all of us here. Please do come back, we all need as much help as we can get. ((hugs))
Sarahlynn, please stay with us. As Nikki said we are all raw and sometimes we get our feelings hurt. Then again we don't always communicate what we really mean. I promise you we do not judge other's motives. When we talk to others face to face it's different because we can better express ourselves but on paper it is harder. Take it from this old lady you'll be glad you stayed.
Sarahlynn..if you don't want to sign on and type your thoughts and feelings at least lurk....you may find answers to some of your questions here.
We all have difficult days and sometimes we don't say things as smoothly as we could have but no one here judges another for what they do or how they feel.
Could you share more about how long you have had to deal with ALZ and your ages? Sometimes some basic info helps people understand where one is coming from and others, especially if near in age have the best suggestions on how to cope..give us all a second chance..no one meant to hurt your feelings.
We can all be so sensitive at times, I know for me all it takes is just a small jab. But, can't you see that we care, and want the best for you? When I read your post I too worried about you, and the situation, but we have not had time to get to know you and see more of your wisdom.
Please continue to come here, this place has saved me in so many ways. There are so many answers that no doctor can tell us, they are here.
Saralynn you have a choice.........you can take your marbles and leave or you can continue to play and learn more about the game (Alzheimers). When you, me or anyone posts we are placing ourselves open to opinions and feelings of others, who may or may not agree with what you say. That's life in the real world or Alzheimer world. No one in this group is mean, nasty or uncaring or hasn't walk a similar path. I've always told my son "When you ask a question there are always two answers, Yes or No they both are valid. We may not like the answer but when you ask/post the question/comments both are the options that can come your way. So please stay open to listening and learning. Your path like all of ours is a long rocky road..........better to do it with a solid safety net (this group)
Saralynn - Hey don't go. I'm interested in your thinking. If some aren't.....well that's life. I've had some not agree with my choices when I moved out and got an apartment away from my hubby. But hey I've got big shoulders. And as this disease progresses having a friend with benefits will be something I will look at. Lets talk.
Saralynn, when I first started reading your comment,I admit ,I was a little upset with it. But then I realized that you were crying out for help and understanding.This is a terrible disease and can be so overwhelming,especially if you have no one to talk with, who can understand the pressure it puts on the caregiver.You have been in my thoughts ever since I read your letter,I've been hoping you were OK.My DH's best friend (lives 200 miles away) calls me every few weeks and we talk for an hour or so.It is so nice to have a conversation with a male,I know how you felt losing your male friend.Please, you will learn so much keeping in contact with this group,I did.Good luck,God Bless.
Linda Mc, I too read and re-read the post and I feel the same way you do. The post was hard to follow but it did allude to having a boyfriend with a name who had met someone else, with a name and the post was a rant about the affair and the boyfriend going south. Saralynn, I think that we are all a little protective of our loved ones and our relationship with them (what ever that relationship may or maynot include). please do not take offense, none is intended. If your intention is to find help and kindred spirits to walk with you hand in hand thru this journey, you have found the right place, if however, you are looking for a place to discuss or rant about an affair gone bad, this is probably not the right site to do that. I am not an internet expert but there may be sites for just that sort of support.
with that being said, welcome to our family. You can learn alot by going back thru the old posts and picking out the topics you are most interested in today. Those interests and concerns will change as the disease progressess.
It is OK with me if she wants to rant about an affair gone bad. This type of thing is an added burden to her life and was making her relationship and caregiving more difficult. I see no difference in ranting about that subject then I do those that rant about their children or other family members. It seems to me that it is the "affair" you disapprove not the ranting...and that is OK too...but, that is your personal opinion and you judgment call whether it should or should not be discussed here.
As many have said on here, we should not judge others and their actions because of our own personal opinions and suggest that they should go to another place to rant. There is nothing like being a caregiver of an Alz. mate because you are watching the person totally lose reality before your very eyes and everyone handles that in a different way. If ranting about an "affair"...children or family members helps a caregiver so be it...if your personal beliefs are offended then try not to read the posts. The gal needed help....that is all that should matter to us not whether we approve or not.
The person in question revealed she had been badly abused earlier obviously still damaged by what happened in her child years. There are those that read that sentence structure and tut tut that it's not terribly well written and those that see how much damage was done. Sarah came on and said she was NOT having an affair and actually reading what was written shows she had some fixation which was not shared - and that's all.
I'll tell you what really happened here. The gestapo thought police didn't like so she was reduced to "claiming" she was an alzheimer's spouse and then the indignation without substance resulted in this thread which was an attempt to outlaw any discussion of "affairs" on the basis that none had ever occured here - all of which is far more offensive to me than Sarah screaming inside.
The truth is there are more threads than the one's already brought ttt that discuss this topic which Linda declared had never been discussed as support for her purpose of outlawing any discussion of it. Here is her quote from above stating the reason this thread exists at all:
"We love our spouses no matter what and if anyone has found comfort elsewhere, it has never been something that has not been aired on this site. In spite of all we go through we still have dignity and class. This site is somewhere I come for advice and cameraderie and hugs and prayers when I need them. Help me out, Joan. Was this the intent? I love you guys, but does there need to be a line drawn somewhere? I really would like to know."
And here is the answer from Joan also above:
"It is certainly your right to disagree with the person you mentioned, but we cannot be their judges."
Hallelujah!
We have come a long way giving women equal rights as opposed to the property they were just a hundred years ago, and black people (chocolate to a painters eye), and gay people who still fight to be allowed to love with equal respect, and the entrenchement of those rights without ability to discriminate others by our own choices that the Americans invented and the Canadians followed.
Whatever we believe that spirit was tested here and passed and exactly equal to the fact that no one had any intentions here, neither do I. And exactly equal to other's expressing opinion, so do I. And exactly equal measure to wherever this comes up - so will I.
Sarah did come here. She did open up here. And I think we all know that Linda was right in her overall assessement but we have further harmed a person who was obviously harmed enough by life. It's also fair to point out that ALL of us are under serious strain and I am equally quilty at times of saying things I wish I hadn't.
I have been chased by women all my life being fortunate in my countenance. It was always the confidence and expression though. My wife never worried when I travelled with young ladies and I never worried when she travelled alone all over the world in her executive position. I transgressed in my heart I can tell you. Women are such lovely creatures. Now that she is helpless I will have no contact that includes any hint of a personal relationship though when she was my equal I did just as she did. We forgave each other over the morning paper along with passing the toast. I have no fear of being judged. I am much more interested within the complexity of life to see by what criteria the judging is done. In truth, I can hardly wait to see what that is.
Are more marks assigned to those that nail the appearance and letter of the thing, or those that invest more deeply in the spirit of the thing, or those that struggle through much harder obstacles and burdens than I ever faced and while it's not as artsy looking or clever - it was the most effort to do right. We'll all find out in our own time.
Amen and amen, Judith, Vickie. "Affair" or not, this is supposed to be a place to express ourselves and to seek help, encouragement, information or just blow. We don't have to read everything or agree on everything. We do need to help one another with living in the dementia world....whatever it takes and then some. (The latter is on buttons some of the staff wear where my hb lives.)
Wolf: I agree totally with your assessment. "Advice is what we ask for when we already know the answer, but wish we didn't." Much like you, both my wife an I traveled extensively throughout our careers. If I had to worry what she was doing or her me, there would be no point of being married (52 yrs). Much like you the rare transgression by either was treated as described in, Erica's Jongs book The Fear of Flying as a Zipless F..... ,
What shocks me is that no one has mentioned having had a conversation with their SO at some point during their marriage/relationship to the effect - If I could no longer be there for you, what would be permissible, how would you want me to live my life? Having had that conversation and knowing in my heart exactly the conduct we would anticipate and want for one another is comforting. Acting on that information is another issue. However, I don't perceive my actions or lack of same suitable for public discussion, particularly when the publicizing is primarily little more that a search of approval from others.
My experience has been those that understand the disease and understand the value of sharing life are very supportive of one's decision to have a partner before a lo passes. Others, also entitled to their opinion, would disagree. It remains up to each person to make that choice. I believe in not to judge, lest you be judged.
to all both positive and negative After reading all the responses including the one that got this whole thing started I felt necessary to add my two cents. Everything stated is just another opinion of something someone posted. Nothing more or less. The main reason we all come here is for as Wolf stated for advice and others opinions. Whether that is agreement or disagreement only the responder can tell what was meant by their wording. No one else knows their mind so it is just another opinion. I have to say at this point no two people think alike (thank God) that is what makes us attractive to others. Whether to cheat on an ill spouse (that is what it really is) or not is up to the person involved. They have a choice to make, to do or not to do. Not everyone will make the same or even the right choice, but it is theirs to make. Only their conscience can help them if they chose to listen to it. When we reply to their post we can only state our individual feelings on it and unless your walking in their shoes you do not know the why. So it suffices to say when you are familiar with their walk or (have been involved with them) only then you can judge. God bless all who come here for support in their walk. Bruce D * and that is my opinion
Alright Nelsons, I'll mention it. My husband did say as much to me in his lucid past. That if he were so diminished, he would bless my moving on. Now that he is so diminished I have no appetite for moving on, but there you go...the discussion occurred!
I have thought that I was a rather "open minded" person, and now see, that maybe I was a bit more closed than I thought.
I feel so bad for you Sarahlynn, and hope beyond words that you can see the caring here. We all know what you are going through, it is not pretty, and that is why we have this ..to me...a sacred place. It is the ONLY place I have ever seen on the internet that rings true and real.