I believe it depends on the spouse caregiver's ethics, beliefs and behaviors, but most importantly on the stage in which the AD spouse is in. If the AD spouse is in the early or mid stages, our society would expect the caregiver to be faithful. At the end stages, I know of caregivers who seek companionship, particularly if the AD spouse is in assisted living or nursing home, but it is controversial. 

Of course, spouse caregivers must have opportunity for respite from caregiving, particularly for the need of interaction with non-AD people. 

Generally when this topic is brought up on the Spouse/Partner board I don't respond because it's their board.  But since this question is asked on the patient board, I'll give my opinion. 

As a patient, I think it is horrible for a spouse to engage in other intimate relationships while still married to an ill spouse.  I believe it is disrespectful to both.  It goes against the marriage vows.  I would never be able to trust a person who would deliberately emotionally disengage from an ill spouse. 

Iris L. 

Well I'm going to venture into some deep water here. I agree in general with everyone thoughts about the outward appearance of disrespect and unfaithfulness displayed by someone who would do this to their spouse. However, I have had this conversation with my wife on numerous occasions. My view has been that I want my wife to be happy and still have a joyous life. When I'm unable to care for myself at all and require care outside our home, then I wanted her to feel free to find someone to continue her life with. I know this goes against what everyone has said in reply to the question. But, if the two parties have agreed early on in the disease then why wouldn't it be okay? I certainly don't want my wife to be miserable up until my death.

I know there is no simple answer to the question and in most cases it would be different depending on the spouses. I've even discussed the possibility of divorce with her because I just don't want her to have to deal with all stuff in the latter stage of the disease.

Anyway, I've probably upset the applecart here but just wanted to share my thoughts and conversations with my wife on the topic. Of course, she has said she has no intention of following my suggestions. But when it gets really bad, I'd hate for her to be miserable!

Paul

Hi Paul,

No problem here with your thoughts. What has been your wife's side of this conversation?

Paul, I read the Spouse/Partner board every day.  It's true, caring for a patient with dementia can be difficult and the long good-bye is real.  I respect your having your viewpoint. 

I have read several spouses state that caring for their very ill spouse has been a way of expressing their love for their spouse.  Marriage isn't about only having good times.  If so, why don't we all divorce as soon as a problem arises? 

Why is it that this topic comes up regarding patients with dementia?  Do spouses think of dating when their spouse has terminal cancer or a severe stroke? 

Personally, if I am going to be abandoned, I'd rather be abandoned early, so I can make my own plans.  I don't want to think of my spouse as itching at the gate, waiting to escape when I'm more disabled. 

Iris L. 

Iris, I don't think anyone here is talking about abandonment. Here is Jan's Story, wife of Barry Petersen. I was thinking of this when I posted above. I believe those of us with the disease need to be loving, caring and considerate of our caregivers to the extent we are able with the progression of the disease, and they need to be loving, caring and considerate of us. 

http://www.youtube.com/watch?v=NR55AeLx4BI 

Thanks Myriam.  I remember his story and read it when it first came out.  I was not impressed with him.  Each to his or her own.

My spouse complained that I couldn't make up my mind, I never could remember what we talked about (so he says) and kept changing my mind. He described me as being moody, although I don't remember that.  I believe he was reacting to things that could have been explainable if he had asked questions instead of making accusations.     

  I refuse to be married to a person, even if I progress to dementia, who will be stepping out on me when I am in need.  This is called cheating.  Not a good marriage behavior.  

I can see myself in the nursing home now.  "Ms. Iris, your husband won't be visiting you today because he's going on a date with another woman." 

Me:  "Call my lawyer.  Tell him to protect me from that cheating blankety-blank!"

I won't be made a fool of, even in the nursing home.

Iris L. 

Mimi S, my wife has no intention of leaving me or dating someone else. She gets really upset when I have brought up this topic. So, I have left it alone. I only commented on the question because I've had this discussion with her many times. I only want her happiness.

Iris, I understand your feelings. I would imagine most folks would agree with you. I know I'm in the minority on this opinion. I just want my wife to be happy. You are probably right in that she is more content being with me than away from me with someone else. I suppose that is what the marriage vows are all about.

I just want my wife to have the opportunity to have a fulfilling life. Her happiness is far more important to me than my happiness or contentment.

I didn't mean to open a can of worms here. Just wanted to share my thoughts and our conversations on the topic.

God Bless, Paul

You didn't open a can of worms, Paul. 

We all can express our opinions freely here.

We are at the forefront of this new frontier of our lives.  Others may speak in generalities.  We are actually living this life, with all that it entails. 

Iris L.

Iris, thanks.

I love the way you put it, we are all at the forefront of a new frontier in our lives. If it is alright, I'd like to use this phrase in one of my daily devotionals.

God Bless, Paul

Please do, Paul!

Iris L.

Paul,

It is good to find someone else who thinks the same way as I do. I have had the very same conversation you had with your wife, with my husband. We discussed it once, I talked to both my sons to ensure he doesn't burn himself out trying to take care of me when I have progressed to such a level that I require 24/7 care. I also wrote a letter for my husband to open when that occurs and have written one for the special person he may meet. I have made videos for everyone and try to update them yearly. Anyway just wanted to share my two cents worth

ffwife54, thanks for your encouraging reply. Was beginning to think I was the only one who felt like I do. Good to know that I'm not alone. Thanks again for your thoughtful words and the warm way in which you have discussed this with your husband.

God Bless, Paul

Unfortunately things are never black and white. One thing I hear a lot is to take care of myself. Could one make the argument that going to dinner or coffee with a friend of the opposite sex to actually have a meal at a nice place, a real conversation, and to temporarily remove yourself from your caregiver role be ok and not seen as unfaithfulness? I have no intentions of ever doing anything but the best for my wife and will always take care of her, love her, and provide for her.

You can't compare dementia and cancer. A person with cancer can still tell their husband they love them, touch them, talk to them, make plans, decisions together. The person in the later satges of dementia can't do any of this and doesn't even know they can't.

I see my situation much like Barry Peterson in "Jan's Story". He loves his wife....there is no doubt. But his life goes on. I have a hard time judging him to harshly as I hope no one does me until they have walked in my shoes.

I certainly understand both sides...I truly do and would support anyone and how they handle things in getting through this.  

Boy, this is really generating a lot of conversations.  Which is good,  and its also good that each one of us realize our situations are 'our' situations.  Each one is different - each caregiver is different - each situation is different.  

I will say not only is each situation different, it is intensely personal.  (Or at least to me it is.)  My DH & I may only be 56, but we were high school sweethearts. Then even tried separate colleges, until we realized we simply had to be together. College, both of us going to school full time and both working.  We lived on Ramen noodles and it was wonderful.  We've been married 37 yrs in June.  I share these details because they makeup the "we" of our relationship.  As I've said each situation is different.  But I will firmly stand tall and scream from the mountain top that I am married to him and that is that.  I will not be in any other relationship except that with DH.  And I know that's the correct answer for us.  And I know that's the correct answer for us because if DH were taking care of me he wouldn't even entertain the thought of another relationship.

It is indeed personal - I absolutely will not judge others for what works for them.  Equally those of us whom stay firm in our marriages shouldn't be judged either.  Its interesting to see others and how they've chosen to handle this situation.  No one knows your journey but you.

eagle

A caretakers job is tough.... illness is tough...a whole lot of growing old is tough....life is filled with tough but as I look  at what my husband and I live everyday I would be very wary of wanting thing to be different because our lives could be so much more difficult. No, I do not have Pollyanna tendencies. All I have to do is look around.

I do feel lonely and isolated sometimes and I do miss the easy idle communication and chatter. I do miss physical intimacy but then we were not young when we started this journey so not a very big deal.

That said we now have an intimacy made of forged links that turn more golden with each turn. There is a deepness and strength that I feel now that could only be the product of adversity.

So would I go out on a date ever while my husband is alive? I don't think so. Would I if my husband dies first? I don't think so. Would I likely start back into a more social life if/when it were appropriate? Yes.

In the meantime I love someone who needs me and I do not intend to do less than my best (woefully lacking) and that takes about all the resources I have. I am lucky to have help and so I can out for short periods.  I do have friends over and I have been able to take 2 one hour classes. What I do now is and will be limited by exactly how my husband is on any particular day. 

I intend to always live my life as fully  as possible...it is just a little cloistered now so that does challenge my creativity i.e. looking at Rosetta Stone but can not decide on which language. 

I was the primary caregiver for my wife who is well into early onset AD. After several years of care at home I finally placed her in a nursing home. I am 64 and the question of a new relationship has been on my mind.

I participated in a discussion group for caregivers at my synagogue. We were working from a new book called “Broken Fragments, Jewish Experiences of Alzheimer’s Disease through Diagnosis, Adaptation, and Moving On.” One chapter addressed this issue. The author of that section, Rabbi Richard Address, had more to say than I can quote here, but I’ll try to summarize. He suggests strongly that healthy couples discuss this topic and create a document to clarify their actions and desires in situations where one may be institutionalized with dementia, and which may include permission for the healthy spouse to develop new intimate relationship even while the affected spouse remains alive. Here is an edited sample of language spouses could use to give permission to the other to seek a new relationship: …if I am “alive” in body, but possibly significantly compromised mentally and/or physically, and loving me as you do, I know you will care for me to the best of your ability. But if I am unable to even recognize you or remember that we are married, you will be faced with a double burden: additional stress of caring for me and the absence of my emotional, physical and intellectual support. In such a case I will want you to be supported by a loving companion. Please find someone you like, who will be available to provide the emotional, intellectual, and physical support and companionship that I cannot provide.

He acknowledged that this route will not be for everyone, but he points out that these caregiving realities cannot be ignored, and a living faith community must offer its support. 

I have not posted in years, by years I mean when Lisa, Allan in Colo. & T-Tom & Mary in W. VA. Few will know what I am talking about. I know Iris remembers. I have been reading the borads almost daily for years, however quit posting. I had to post my thoughts on this topic. This is just what I think & respect what others think.

I read the story on Jan's story, her husband Barry if I recall, had put his wife in a nursing home, of course he had to. 

I have had EOAD s since 2007 & am doing great. My husband also had severe heart failure & COPD. When I read what Jan's husband had written & the photo's he posted I wanted to throw up. By that I mean, Walking hand in hand with this other woman, visiting his wife with this woman & living with her. I bet his children are real proud of him. 

My thoughts are he was trying to get people to see his side for his own gain. What a slap in the face to Jan. No one can really say there are times when she remembers him, maybe not. But, to flaunt this upon her is a disgrace. 

If my own husband as sick as he his, with hearth failure is bad memory loss. Never, I say Never would I find someone else while he was that sick. 

Yes, I know I will never be well again. But, I do know my husband would have more respect for me than to flaunt another woman at my nursing home. To me, that's as sorry as they come.

It's ok if no one agrees with me. Just wanted to say this, it had really botherd me long before it was posted here, when I read what this man had written. & photo's. He doesn't need our approval so why the Poor me act? 

In oother words my friends, I think this is a sin & I'm no bible thumper trying to push my idea's that way. Nor the fact I have EOAD, but my husband as I said is very sick. How could someone go see their wife with ALZ & bring their so called friend that they sleep with every night to see this woman that was his life as he said. Is beyong me. 

Just what I think. Thanks for reading.

Didn't his wife, Jan, have a relationship with another man in the assisted living facility she was in? I haven't seen the segment in a while. It's an interesting question whether it's appropriate for a married AD patient living in a facility to have a love relationship with another AD patient in the facility. Am not making judgments, just pondering the question.

I had to answer this post . How could someone say didn't Jan have a relationship with another ALZ patient in the assisted living? Jan had no idea of what was going on, right? If I am correct it was her husband who said this. I can't understand why people try to find this interesting an ADZ patient would do this. The time comes & my time will come where you get child like. Maybe it was like two children & not sleeping every night with someone like her husband had been doing for years. I would have to say give me a break. There is a difference, unless you have walked a mile in an ALZ shoes don't try to judge what may not even be there.

Others may think it's OK. I know Iris does not think this is the way to act. When a normal person wants to do something, they can talk themselves into thinking of many reasons to do somehing they want to do. When an ALZ person thinks a lot of the time it's like there is a puzzle in our heads and there are pieces are missing. Hard to understand? That's because you don't have ALZ.

S.H., I have Alzheimer's, the genetic type. I don't believe the same way you do, but I respect your opinion. Please be respectful of mine.

It seems you may be having a difficult time. Please call 800-272-3900.

I was only stating what I thought, not you. I do not need the 800#. I am doing great. I don't know why you think you have the right to say I may be having problems. I am not. Just because we don't agree does not give you the right to say that to me. I am also as sick as you are. We all have different ideas. This is why I don't post any longer. You keep what you think about me needing the 800# to yourself. I never said maybe you need it. did I? I am not that kind of person. 

All, of us with ALZ have problems, if we didn't we would not read this board. All the years I posted, I was never advised to call the 800#. I have called it five years ago  & was giving the name of someone who worked with ALZ patients, best thing I ever did, I went for 8 months, until Insurance changed, am in the process of getting another one. Just something to ponder on.

why oh why would I enter this conversation?

One comment: being married is hard at times. Super hard. People take on partners out side of marriage all the time, illness or not. usually not. And they have "their reasons".

 some people can not face the pain of what this illness does to a loved one. So they find a new person to fill "the void" and presto! Life is easy again and one can then pull a Rochester (?) with the crazy wife locked away. ( side note, Downton Abby has an insane wife in the story line which means the husband can divorce her so he does not have to be alone...because being alone is too painful for some. Emotional pain is just too scary for them to endure. People drink to avoid pain, use drugs, over work, sexual diversions...all kinds of stuff. feeling that kind of pain and being open to it, Compassionate Care, is super wonderful for some people. Feeling deeply, allowing oneself to be wounded has given me depth and vision. Crying is a healthy reaction to this human condition, or it has been for me. I loved Hospice work.

  Now I have EOAD and my husband is 10 years younger. we came to conclusion that the ALZ person may not have normal memory or brain function but the soul and consciousness is apart from brain function. For all we know my husband may drop dead of a heart attack before I am done with this. It is all unpredictable. But we are on this as an adventure and we think we will communicate no matter what, as I did with my father.

There is a thing called Terminal Lucidity - ? Dementia is old fashioned term, I suspect there is plenty of life inside those hearts and souls no matter what the brain is doing and we want to investigate it and pass on the knowledge gained.

I am adamant that should this become too much he should find me someone else to step in. No matter what, all of us patients dread being at the mercy of an angry "caregiver" and are acutely sensitive to the Vibes of those around us. We read energy and intent very accurately, no matter what our eyes may suggest. Maybe people who AGREE the partner should "move on" are basically saying "Yeah, if this is so bad for you, I'd rather you go away." But are being nice about it, or in denial. marriage is marriage to us. 

But planning ahead of time to run away from the experience, although a personal choice, seems shallow, a tragic loss for growth.

I find this topic to be negative and hurtful.  I find it distressing.  I don't like to see a topic on cheating on a sick person on our patient board.   It seems to me that a post like this is asking "permission"  to cheat on a sick wife from us people who are afflicted like the wife.  Perhaps if we are permissive, then the cheating isn't so bad in the cheater's mind. 

In all the time I have been on these boards,  I have not seen this topic brought up by patients.  Are patients interested in this? 

This topic got me so upset I had to take a break from the boards.  I can't tolerate a lot of negative and depressing thoughts.  There was a thread a while back about caregivers venting on the patient board.  I consider this post to be one of those types of venting posts.  It was mentioned that caregiver venting posts can chase away new patient members.  This thread certainly chased me away.  I came back to respond to a new patient in need.  This is what I believe our board should be about, helping those with dementia, not scaring them that a hot to trot spouse is going to cut out on them when the going gets a little tough, IMO.

I know others have different opinions.  I wanted to express my opinion because I don't think I have been so offended by a post before.  Other than the one about mass euthanasia of  patients who are diagosed with dementia.  But that one was not on this board, but on the caregiver board.

This is all I'm going to say.

Iris L. 

I am a caregiver who deeply loves her spouse, come what may.  He is in late stage 6 at this time.  I am going to go a little off topic but I think that alz+ brought up something that is so very important and vital.  And that is that brain functioning is separate from soul and consciousness. 

My mother passed from alz in 2010.  As she progressed into the later stages I was in awe of how filled with light she became.  Her brain functioning diminished along the usual lines.  At the same time, her being lit up the room.

My husband too has blossomed with beauty through the course of his illness.  And again, I am in awe.  And I marvel at the strength of soul he must have to accept and take on this illness.  And at the same time to let his sense of compassion and tenderness fill his being.

In many ways, this illness has been a portal of spirit for both of us.  Is living with this illness difficult?  ridiculously so.  And yet, the way it has dismantled and transformed us is beyond words.

Thanks you alz+ and all the rest of you on this forum.  For your beauty.  For your endurance.  For your compassion.  For allowing me to participate with you on this forum.

Your beauty endures.

I hope my words have not offended anyone.  I deeply respect all who are impacted by this illness. 

Cynthia

Terminal Lucidity - if can gather my brain typing skills and post some info on that, please write more about your Mom and Husband and the Light.

Personally, I need to think about this disease from an inside out point of view, not how it looks to people conditioned to see it as diminishment and dreadful and incurable so I am investigating and keeping notes.

When I was first diagnosed, after years of confusing stuff and lots of arguments at home and being a fearful passenger etc, misplacing my stuff, but after the neurologist said AZHEIMER'S I had lots of fears and anger that my husband would have a life after I was gone. My counselor got me to play with those ideas and I now find them very funny. But this hits a raw nerve for most people about abandonment and rejection and all that human stuff.

thank you for kind words, want to learn more from you.

love to all

My late wife was diagnosed with AD in her late fifties. She passed away aged 73.

Reading the posts on this subject makes me realize how very fortunate I have been to have found a very special girl to share my life with. We were married 52 years and during the final years of her illness I grew to love her all the more. It was that love that empowered me to spend each day 24/7 year on year care giving for her on my own at home. Each fleeting moment was too precious to share with anyone.

For the past six years I've lived alone and the thought of another woman is non existent.

She has left me a reminder of her wonderful self in the form of a son and wonderful daughter she gave birth to. Now there are nine grandchildren plus nine great grandchildren, all doing well. What more could any man wish for?