How do I get over the guilt of wanting to be romantically involved with someone other than my husband with dementia?

Very good advice, wellspouse. :)

My mother has lived with me (& hubby & teenaged son) for 16 years. She was a school teacher/businesswoman. Awesome at both. We grew up at the mouth of the Mississippi River & kept an almanac turned to the page of international flags on the coffee table so that as the big cargo ships and tankers passed by (about two blocks away), we could see what country they were from. Now Mom is 90, the oldest living female WWII veteran in the little community in which my family lives. Navy. She's in a behavioral facility (short term I hope) about 30 minutes away. Prior to entering, she was on no medication whatsoever. She had developed a strong dislike for teenage boys, as they can be a little loud and, well, you know. Ok, I'm bragging, but my son is good-looking and popular, and many times his friends are over. I always insist that they be respectful of Mom (we call her Maw Maw) - but I can't expect my son to stop breathing. It's a careful balance, I suppose. One day, not long ago, a kid from the neighborhood was sitting at my piano playing softly - granted he was playing heart & soul over and over, and my Mom - without warning - picked up a ladderback chair (fairly light) and cracked it over his back and called him a "long-legged wart." Of course, he collapsed in laughter. Later, I learned that she had been trying to sword-fight the boys with a real knife from the kitchen. Soon, she was becoming increasingly combative - even with me. She hit me. I called the local physician's referral at the local hospital and told them I knew what programs had been discontinued (senior care), but could they please guide me to some program or facility where my mom could get some help or evaluation. Mom's been in a behavioral facility for about two weeks, and though she has not been physically abusive with others there, she has had a number of verbal altercations. The Rx she's on is being adjusted. Seems there's a fine line between catatonic and just calming her mood. She is slipping away in the sense that she has no short-term memory when it comes to specific details or events, and when she's medicated, well she's just not Mom anymore. Not the vital, active, take-charge woman I knew all my life. I did one of those HGTV room makeovers for her (it took longer than 30 minutes) - a lovely blue & yellow Cape Cod look - she'll love it. Guilt anyone? I feel guilty that my little family is now enjoying some peace, and sleeping all night without Maw Maw turning on the lights asking if it's time to get up at 3:00 am. Now we just wake up automatically at 3 and smile and go back to sleep. Maw Maw living here is the only "normal" my son has ever known. For the first time in 16 years, I am having some time to myself in my home. I cherish solitude. I work out of my home office - now there are no interruptions. I either visit or call Mom everyday. Many times I'm reduced to a basket case. I'll go visit her today. Maybe I'll take a picture album. She'll enjoy that. That's my story. Some of it anyway. You can read the rest in the book I'm writing - I know, every caregiver has a story to tell, a book to write. Hey, it can be therapeutic. K.

No, of course I'm not training my son to someday change my diapers. Kids learn from what we do - they observe our attitudes and actions. They learn to care if they see us care. They learn to do the right thing or the wrong, based on what we do before them. I just want my son to learn from our experiences as caregivers. He helps, too. Umm. . . how is that selfish? I didn't quite understand that.

Hi Karen ~
Nice to know what you're dealing with there. Please pop it onto your profile? There are so many dealing with memory loss parents. Sharing really helps.

Cheers ~

Karen, I really did enjoy your last post telling us your story. It helped me to have a little insight into your angry defensive stance here. And please don't get offended by my saying that. It's just my opinion. I only bring it up because I have learned from personal experience that holding in all that anger is so harmful to us physically, mentally and Spiritually. You might want to do a little journal writing on the subject of Anger and figure out why you're holding on to it. Maybe you will find my comments helpful to you as one on their journey in life, maybe not. It's up to you. But know this, and I speak for many others here on this forum that we are all really here to help build one another up, to find an outlet to express our frustrations and grief over caring for the ones we love and it's the right thing to do. We all have our beliefs about what is right or wrong and we all fall short, make mistakes, vent and say things we really don't mean. When we make these mistakes we need to remind each other that they remind us we are human. Pouring guilt on top of guilt is only harming someone more. So even if a person is thinking something that you believe is wrong as a good person show them love by allowing them to be who they are and except them in that moment. We all have the free will to be who we are.

I only wrote this because you asked for someone to answer you and I hope that I've shed a little light for you.

Karen you have my sympathy with what you are going through. My Mom hasn't known I'm her daughter for many years apart from the occasional lucid minute where there is a flash of recognition and maybe a calling of my name - that is what keeps me going. It must be very difficult to deal with a Mom who becomes angry and tries to physically assault you or your son. I've often thought that in all the variances of Dementia that would be the most difficult thing to deal with and I consider myself lucky that my Mom is very placid and has been for almost all of the last 13yrs since her diagnosis. As a family we lament that this has happened to Mom - the woman who could go back generations and tell us family history and who we were related to. (We live in small community - a village of approx 2,000 people). But, there is nothing we can do but accept it. I'm sure your faith keeps you going. My parents were devout Christians too and I admit I see saw back and forth. There are times when I pray so very hard and really believe that I will see my Dad in the next life. I really really hope so. At other times I have doubts about the whole religion thing. I struggle with my faith but I think that's normal for a lot of people. Our local parish Priest calls to see Mom every few weeks and he and I have had many discussions on life etc. Fr. Crawford advised me that I, in my own way am doing God's work and shouldn't feel guilty about the moments of doubt. That is the human condition. I wish you well. Take of yourself and your family. Annie

This is as we all know, is a very difficult decision. May factors come to bear. Religious upbringing, family and friends... thinking and outright condeming talk and pointed remarks directed to you as an aside.

As a pastor ("retired") of an evangelical faith based denomination, this problem has raised it's ugly head on a number occasions through out the course of my ministry.

After much prayer, research, and counsel I found many diverse approaches to sort through.

I concluded, that there is no one " cookie cutter" approach.

Having said all of this, I can only advise you to examine in depth the situation you are in. I am with you 100% regarding a totally unresponsive spouse or partner. Let's face it, people are going to talk and say hurtful things about what ever you do. You need to develop a hard skin and forgive them as they are not living in the moment as you are.

The bottom line, in your case, is that I think you need to cut out time in your caregiving for some personal time. Try to get a family member to fill in for you for an evening or afternoon, even a day. Try getting involved in outside fun groups...bowling, sewing, reading groups at public libraries, girlfriend time over lunch...you get the idea. Down time will help you be invigorated to be a responsible caregiver. Remember, you are not alone!

If you meet someone of interest, don't be afraid to establish a friendship and if it develops in to something bigger proceed with caution letting the relationship develop slowly and build it on a firm foundation.

Above all, if you do it in this fashion, you will minimize the guilt and hurt from other people's remarks. I wish you well...your dedication is admirable. You deserve some joy and happiness in you life.

karentaylor, how about something like this: "Jules, I am so sorry for your situation. How devastating that must be to have that happen to your husband at such a young age. But personally I feel like it would be wrong for you to seek out companionship elsewhere with another man after you took your vows for better for worse and in sickness and in health with your husband. I am sure you must get lonely and miss that closeness but in my book it would be wrong. I wish you the best in your struggles and will pray for you."

I don't know. Maybe someone else could write something better. But I just thought I would provide a caring example.

miz

Karen, Thank you for telling us some of your story. My mom is still at home and is in much the same condition. She also has Parkinsons and therefore is confined to a wheelchair due to her many falls. She needs constant supervision and does get "cranky" like your mom. Sometimes med adjustments help. Since Mom started taking Namenda in March, there is a marked improvement in her personality, but she still has her moments. Not sure what they are treating your mom with, but the Namenda seems to work well for patients that take Aricept. Hope this helps!

Jules, that was just an example for karentaylor. Not what i am actually saying to you. :))

karentaylor, please allow me to add one more thing you could have said as a caring person. "Jules, it is normal and okay to have those feelings but acting on them would not be."

Ladies from GO...I am so proud of the way you turned around and showed compassion for a truly stressed out caregiver.

Because we all on this thread, the GO thread that is, have a loving spirit, whether we feel we are directed by Jesus to do this or not, KT was shown kindness, graciousness and concern when she revealed her mother's problems. Bravo Ladies! Kindness is never overlooked.

I will not come back to this thread to see what if any response was made to my comment. It was to emotionally draining to me to read as much as I have already.

KT, I truly hope your mother improves and that you have peace in your life. My heart goes out to you and your family for the self sacrificing attitude you all have shown with your mother.

Kt, I am sorry for you and your mother. It must be very stressful (no one of us is in an easy situation, of course).
What happened to Jules? She has abandoned her own thread!!!!

"To err is human; to forgive, divine." Alexander Pope

JULES:

Did you ever have so-called "impure" thoughts -- being with someone else -- when your husband was 100%? Before becoming a widower at 28, I fantasized about it a couple of times over 9-year marriage. But never did it because I'd rather be with the woman I married. (Even did a "Cost Benefit Analysis Scale" and there was nothing on the plus side. Plus I'd feel really rotten afterwards.) Nowadays, whenever I have a moment of indecision, I ask myself "Am I going to regret this?"

Find a support group and drop some of the guilt with others who feel like you do. 1-on-1 counseling could help, but you might encounter a lot of reflective listening in the form of a sex-less individual who paraphrases everything you say, throws it back at you, and then bill your insurance. Church might make you feel even guiltier.

In the end, your husband's personality and the type of relationship you've had over the years will probably determine which road you take.

Good luck my friend.

You are having guilt just for the 'thought' of having a another relationship.

There are some posts very worth reading on this thread, such as the ones validating and accepting one's feelings, yet acting according to what you genuinely have reason to believe is honorable and right. There is a lot of sorrow in accepting that things are bad due to illness and/or personality flaws of loved ones, and not going to get better. No, its not fair to have your intimacy and sexual life end before its time, yet it happens to a lot of us. Our job on here is to share the burdens and try to make things more bearable for each other. I'm not saying we never point out that someone's perspective or plan might be wrong, just that we show compassion. Most people do, but now jules is a member of the club who has been deeply hurt by the few who don't. I was once on a thread where someone INSISTED that negative feelings meant you were an unfit caregiver. I remember making the person clarify that was what they were really saying, in hopes they would recognize how off base that was, and they may have - and I also remember how absolutely beaten up and wounded I felt aftwerwards. Its sort of like doing the group trust excercise where people are supposed to catch you but they actually let you fall instead. Just my $0.02.

jules - how is your husband here lately ?
i have been thinking about you and wondering if youre doing ok . i dont want to leave you out and i dont mean to shut the door on you . i was shuttin the door at karen .
i hope all is well at your area and i sure hope you ll find you a companiship . i know what its like to be lonely till my sister came to live with me to help me with dad . he is 88 yrs old and bedriden too . so sad to sit ther and watch a helpless guy layin there . suxs .
hope you have a good evening and hope to hear from you again soon . xoxox

Wow, tough stuff. It is not fun to be alone & be married. Much less taking care of someone so sick for 24/7. But, I think you might need to ask yourself how you would feel if the tables were turned. I believe the vows were in sickness & in health till death do us part. While I understand your postion, I would wait. That way there is no guilt, shame & no regrets and you can walk away with clean hands. Always believe the best is yet to come. Stay out of compromising & vulnerable positions. Though you feel weak, you will become stronger by not giving in to a situation that will complicate your life right now.

Most posts seems to convey that having a relationship will be a bad and complicated thing; what if the relationship brings support, and help, and fulfillment. These things seemed to lacking in the relationship before this travesty anyway. I would say, if your relationship (extramarital/caregiver relationship) outside of your role as caregiver (trapped wife) brings support, and help, and fulfillment I would go for it. All the best.

Jules, I hope you are helped by posting here.

Hi Linda, Dan is doing fine physically. The mind on the other hand isn't. It breaks a persons heart to have to watch someone you loved fade and are not able to do anything to stop the progression. I took him to wal mart today. He put everything he could think of in the shoppin cart! Dog food of all things. We have no dog! Looking for one though. We watched a dog for a friend while he was in the hospital for chemo. Dan related to the dog alot. Talked to her alot too. I'm looking for a Schnauzer or a poodle. They will attach to one person. The doctor said this may be good for him. Karen, I wish you the very best. No hard feelings I hope. I went out the other night dancing. Not one impure thought popped into my head. Thanks Everyone for listening. I really believe this is helping.

jules ! that is a wonderful news ! yes a little bitty dog will help and keep ur husband happy and have a lit furry to keep him company . great idea ! am so happy about that . i bet he is exciting that is why he got tons of dog food at walmart , hahaha
glad u went out and went dancing ! i love doing that too . every once in a great while me and my gfriends would go dancin , eat at mexcian place and get wasted on margaritta and bam off to the dance floor . it sure does feels great and happy smilin faces .
thank you for replyin back to me and now i feel so much better , big hugs to you jules and keep comin back . let me know if u did get u a dog . i rescuse a dog from the pound last mnth , suppose be my daughter s dog but now its mine . i know he respects me cuz i saved his life . hes too hyper but he is calmin down some , he knows i do not like him jumpin on me , those claws !! terrible , scars i got now , tons of em .
keep in touch ,,, xoxo

I think it would be so great if you got a dog! Great companionship and comfort (and, well, a little bit of work) for both of you.

I have a Westie (my son's dog) and my liitle Yorkie (who I call my little child substitute since my son is a teen-ager now). My little Lucy is soo sweet; she loves to cuddle and just be close. My Westie loves to WALK and it is a great stress-reliever to get off on some kind of a trail with him and just walk some of my stress away.

I'm glad you went out dancing and had some fun. And without one impure thought - Whohoo!

Jules,
I said I wasn't coming back but here I am. I just wanted to check on you to see how you're doing. Your thread got hijacked by someone else and unfortunately I concentrated on her and not you. I regret that. You are a loving and faithful wife. Your husband, somewhere in his mind, knows and appreciates what you do for him. A night of dancing must have been so much fun. A good way to get rid of stress. Take care of yourself. We all care about you.

My daughter got a Yorkie when she first began caregving for Mom (I've had mom 2+ yrs now). She trained him (Roo) as a companion animal, and whenever daughter had to leave Mom alone Roo would sit in Mom's lap the entire time she was gone. Great idea.

jules, you are a wonderful caring person and I am so glad you were able to get out and have some fun. :)) I love the dog idea too. You will find that lots of caregivers have either dogs or cats or both. I think it goes along with the "caring" part. I can't imagine not having my two kitties. The one we had before and the male we have now used to love to lay on Mom's bed. Have a wonderful night and please keep posting!!

love,
miz

Hey Guys, Getting ready to take Dan for a ride. Going to go look at the pound for a dog. He loves to go riding. I have to put him in the back seat though because he opens the doors going down the highway. The back doors have saftey locks. The front door does'nt. I cannot express enough how all of you have helped me with my strained mentality. I feel so much better and so happy I found this site to vent on. My daughters are going to take turns every weekend to keep him over nite so I can go do something. I had a long talk with them. I used some of the advice all of you have given me as to how I talked to them and it worked. Now we will see. Got to go. He's headed for the car without me, AGAIN! Luv you guys. talk soon!

I am so glad you are feeling better. That is sooo good to hear, jules!! Please keep venting. Good luck at the pound. :))

Looks like Irene is coming to you all in NC! Please be careful. Like ladee says don't wait until last minute. Especially hard with our loved ones. My son and s fam live in Cocoa, Fl...looks like it may pass them up and head your way...have a niece in Jacksonville..may be close for them. Please be safe