amicrazy--you sound like a compassionate woman and I wish you well. I agree with Vickie that your presence is an asset to the family. I don't feel that your being there a few times a week is out of line, and yes, age probably has a lot to do with our opinions about a well spouse dating/committing to another relationship. Most of us have complained about being lonely, overwhelmed, stressed, etc. while actively caregiving. Although this situation is a bit unconventional, I can't criticize help for a caregiver, regardless of the circumstances. It doesn't sound to me like the children/ill spouse are being affected adversely, and apparently, you feel the relationship with this man is worth the potential risk. It could turn out to be a win/win for all involved.
Lloyd had moments of clarity up to 5 days before he died. I would have never taken the chance of possibly devastating him by having another man around...besides it is just something I would not do. And I am concerned what the children are learning from this. I know for a fact that my children and my grandchildren have learned what I want them to know about real love from our situation. We made a commitment...we got married for better or worse, in sickness and in health, 'til death. I loved him no matter what and he loved me, too. "I love you" was pretty much the last thing he could or would say all the time. He knew. He couldn't feed himself. He couldn't wipe his own bum. He couldn't brush his own teeth. He couldn't put his medicine in his own mouth. BUT I can guarantee he knew I loved him and only him with all my heart and I still do and he loved me the best he could in his situation. I have no guilt and no regrets. I did it all with quiet dignity the way he would have wanted.
I find this thread really upsetting even though it has nothing to do with me. I would have wanted Gord's entire attention to be with me and my children had I been the one with Alzheimer's.
"I wasn't looking for approval as I dont need approval. I was looking for someone in a similar situation to mine as some of you have made a very personal choice to date just like I have chosen to be involved."
Again, no disrespect, but this board is for spouses of Alzheimer's victims, that is the perspective we have and can relate to. Even those few who have decided to date another would relate to the husband, not you. I don't think we can offer you what you are looking for.
Maybe try some of the other forums mentioned or maybe try to contact Mary Nell Wolff, Barry Petersen's companion. They did not have the same situation with the kids and his wife was in a facility, but I would think she could relate to you more.
jang* I am sorry this thread has upset you ((hugs))
Amicrazy - first mm-Man. + 10 well said! If you are questioning the moral intricacies, viability, conflicts of your relationship, try to imagine what the overwhelming conflict "he" is forced to confront on a daily basis, assuming of course, the marriage was a "good" one. Even with an incredibly supportive and approving family, including DW's brothers & our children basically saying: "you deserve a life, you've given so much for so long, don't feel guilty if you can find a little joy in life." The moral conundrum facing males needs after years of denial, self-sacrifice that goes along with caregiving is a dilemma with no answer that works for everyone . When a loved one has deteriorated to little more than a non-commutative physical presence the need for companionship becomes overwhelming if only to have someone to share the despair with I pity and admire the woman capable of coping with a male so seriously conflicted ...'it's a difficult role you've chosen. Do you fear or anticipate a change in "him" after his wife passes.... think about it
Nikki Thank you. You are so good at saying it as it needs to be said without being nasty. I found this very upsetting and I'm happy to see I am not the only one. My DH is going to live in LTC to get away from me as his caregiver and that really hurts as we were always so close, but his d...m disease has turned him into someone I don't know anymore but I can't even think about someone else in his place and I know if it were the other way around he wouldn't either. It's " in sickened and in health until death" for me. I wondered if she is for real or someone just eying to stir up trouble and dividing us?
Amicrazy-- I don't think you did anything wrong by information-seeking here. Obviously, this is a topic that does elicit strong emotional responses...many not very sympathetic toward your situation, others which are.
Which seems (to me) to point to the fact that it comes down to you, the guy, his family...and what all of you as a collective feel is right.
I seriously believe that core person that you love is still locked in there somewhere and that this new person is just like a prison keeping that person captive. That does not mean your sweetheart is not there. I believe he/she can still see out between the "bars". Put yourself in their position. How would you like to be in jail and look out between the bars and see the one you love showing affection to someone else like you're not even there? Just saying....... I'm with jang and Nikki. Truly loving someone isn't about "giving so much for so long". It's about giving it EVERYTHING you've got. Everyone deserves a life...even our poor darlings. And I believe that the very last thing they feel and know is our love and devotion. Some of you may say "Oh, she has a star. She is already on the other side of this damn disease." But I was right there with him to the end as I promised and he died at home in his own bed with me right beside him. And I can selfishly and honestly say that I would clean up all the poop and perform every function for him just to see his smile or the twinkle in his eyes one more time. Unselfishly .......I know he is finally at peace.
What our spouses understand at any given moment or what they might remember at any even moment I don't believe anybody can know. I do know that their memory can come and go in the wink of an eye. They may understand what is happening for a short period of time but in my Kathryn's case it would be lost in her memory in the next few minutes or even faster once she was in the advanced stages. During the last three years of her life she didn't know who I was or who any of our friends were but as they were taking her out of the house for the last time my friend Robby was coming in and when she saw him she put out her hands and gave him a hug and a kiss and said "where have you been, I have missed my hugs and kisses", He would always give her a hug and a kiss. The last thing she said was to call out for me using my name. She closed her eyes a couple of minutes later and went to sleep and didn't wake up again for the next four days and passed away. As you can see they may or may not be aware of what is happening at any moment in time.
I do have a suggestion for you. It might be a good idea to ask you friend to join this site. He could get a better idea and support in dealings with it and then be able to assist you from his own perspective. Even if he couldn't relate it to your perspective I am sure it would be a big help to him in caring for his spouse and in dealing with your relationship as well.
I'm with you Linda. I had trouble sleeping last night because of this thread. I also thought about it on my walk this morning. Even when Gord no longer knew me, there was a bond. I remember once when our son dropped in for a visit. Gord became upset and said he was leaving. As it turned out, he thought that our son was a boyfriend. Any time I would talk to a man, Gord became agitated and acted out. On some level, he knew that we were one. I feel so sad for the wife in all of this .On some level, she knows what is going on. This is adding another layer of sadness to an already awful existence.
When I said the vows, " in sickness and in health", I meant them with all my heart.
Thank you Nikki for saying just what I was thinking. You said it in a much nicer way than the words running through my head. Thanks to you and Jazzy for the hugs.
I certainly not going to criticize anyone about dating a caregiver spouse. I do believe like Nikki, that this site is primarily for Alz spouses, but that being said I am interested in Amicrazy's situation. I know I should not make generalizations, they usually get me into trouble, but marty offers a good perspective. I think men need the companionship of a woman more than a woman needs the companionship of the man. Maybe it is because God took that rib from Adam and we still have that connection, I don't know. As a suffering Alz spouse, I so deeply miss the companionship of my DW. I long for what I have lost. I am not talking about sex. Maybe 30 years ago that would have been way up on my list of needs, but I have grown up since then and my "needs" are much deeper now. I am talking about the little things. Sharing of insignificant experiences such as watching the sun set with a glass of wine, talking about an issue or item of interest, discussing whether we should buy a new car or fix the roof. I miss the emotional and psychological support when things aren't going your way or facing an acute health issue. Those are all gone and they are not coming back.
As my DW proceeds along the Alz journey into the late stage of the disease, I am conflicted with being there for her and caring for her needs and my own. I would love to find a female companion to share those things I lost. It would at least give me some hope for the future, which right now there doesn't seem to be a very happy ending. But we who are in Limbo are not very attractive to most women out there. It takes a special person to want to get even close to a caregiving spouse because of the conflicts involved. Maybe I feel this way because of my DW's EOA and I have 20-25 years ahead of me without her in my life. That is pretty darn depressing to think hat I could very well live out my remaining years alone. I try filling the voids in with my animals, my friends, activities but I found that unless I am occupied 24/7, I still go to sleep and wake up alone. My long way of saying that I do not judge what Amicrazy for being in a relationship with an Alz spouse caregiver, but you all have done a wonderful job of helping her understand the situation she is facing, Thank you.
Think about this, folks. As we have said over and over--each AD patient is different. Steve still knows me, shows affection, and a few days ago, even said my name! But in order to engage with him, most times I have to crouch down (if he is seated) and force him to make eye contact--then he knows it's me. I could have President Obama or the Queen of England by my side, and there's no way he would recognize them or even know they were with me. So yes, the situation amicrazy has described might not have worked for you or your spouse, but in her case (and Barry Petersen's) there is strong likelihood that the person with dementia is unaware.
Marty--Your sentence "The moral condrum facing males" etc. is also faced by female caregivers--I see no difference. We all feel the loss of our partners and have similar needs.
I believe it is possible to still love your spouse with all your heart and soul, give them the best care possible, and to rediscover threads of normalcy in your own life at the same time. It is a juggling act, (and not necessarily easy) but it can be done if one wants to.
On another note--anyone watch the PBS series Mr. Selfridge? I recorded it and am watching--there's a character who took care of his wife for 12 years, while having another relationship with a coworker. After the wife dies, he has guilt feelings and doesn't seem to want to continue the other relationship. I realize it's fiction, but it reminded me of this thread.
Cheval, call me once your wife is down for the night and I will bring the "whine" and cheese and sit on your porch. The car - as long as you put the key in the ignition and it gets you from point "A" to point "B", it's good. The roof - as long as it's not dripping on your head or ruining your stuff, it'll be ok. Don't go all judgy on me now...I have my *. Just kidding.......
Cheval I agree with your statement about it being emotional and psychological support. I provide those things to him such as the things you described.
As far as having him join this site no way in heck I would even suggest that. The people on this site have judged me for what I am doing and will judge him as well. The situation of dealing with an ALZ spouse is hard enough and you are constantly questioning the decisions that you make on a daily basis. I say that not because he would question his relationship with me but because people come here for support and even though some of you understand our situation most have to strong of opinions about this subject and have voiced them. Where is their support in that? Yes everyone is entitled to their opinions and I respect that but life is difficult enough without added judgement. Will their be people that will judge our situation of course there will be but this is a time in his life where he needs love and support not criticism.
Firstly, let me make it clear that I personally do not have a problem with a spouse seeking out a relationship if that is what they wish to do. I made that clear in my first reply to this thread and on every other thread about this that has been posted here. In the 5 years I have been a member here this topic has come up many times and has always brought with it much debate.
Though I do not judge anyone for their choice to see another, I do have strong conviction that the affair should not be held in the home of the ill spouse. I have seen first hand that even in advanced stages, there are moments of clarity. Yes it is true they would most likely forget the hurt that moment caused, but is it really worth the risk of hurting them, if "even for a moment" ? All they have are moments...... Their feelings need to be paramount in every situation, especially one like this where there is potential that they could be hurt deeply.
One can not compare this situation to Barry Petersen, his wife was in a facility.
The reason I chose this site to join is because it is a forum for spouses. It is my safe haven. Though I too see nothing wrong with seeking out answers, the question has been asked an answered. I was trying to kindly point her in a direction that might be more beneficial to her, just as we have done for other non spouses who have posted here in the past.
Cheval, you are not "in trouble" for making generalizations, but I will nicely say, I think you have a lot to learn about the opposite sex. I don't believe in this instance there is much difference, women miss and long for the same things. This board is full of the despair we have suffered losing our spouses, of the crippling loneliness we feel.
“You have come to a place of truth, support, and solutions to the distinctive issues and challenges faced by the spouses of Alzheimer patients.”
You are not a spouse.
I don’t see any instance where you have not offered any support to anyone on this site. We have many experts in law, medicine, pharmacy, business, nursing, and hands-on experience, and we offer mutual support to each other. The only truth I see is that this is all about you. YOU want to be supported.
Our solution is for you to stop causing anguish to many on this site. Go somewhere else.
I know myself that my feelings are raw. My short amount of years(3 and a half) of 24/7 caregiving has taken many of my soft edges off my ability to be kinder to others. ALL my softer side/kindness is used up on DH and even then I run out and become edgy with him.
You have raised a topic that in normal life would have people take sides. So is it any wonder that it would do the same here. You must remember, we are living in a hell that we did not create and can find little escape from. We have raw nerves and open wounds that can never fully heal. If we seem judgmental, well maybe we are. We have lost our loved ones to a slow and horrid death that can't be stopped, we have lost our jobs, homes, friends, family and all we have left is what we think and maybe we voice it a bit strong.
Linda, Thank you girl, I haven't laughed like that in a while. Nikki, I would agree with you that I have a lot to learn about the opposite sex. I have been out of practice for so long, but I am trying to learn. I guess it is the females seem to hide it so well and we men are oh so weak, lol (((Hugs)))
You are more than welcome, Cheval. We do cut up once in a while on here. God knows without humor, I would have been hanging by my neck from the rafters a looonnng looonng time ago. I know what you are saying about "out of practice" for sure. Now that I have reached the other side of the great Alzheimer's abyss, I have NOT A CLUE!!! Flirting...wooing...courting...batting my old eyes...forget it! I'm too damn tired. Love will have to strike me like a bolt of lightning! Until then, I will be sitting here missing my baby.
As you know, I rarely allow anyone other than spouses to post on these boards, as I feel it is important for US to have a safe place to discuss OUR issues that are unique to Alzheimer Spouses. I only allowed "amicrazy" to post because we have so often discussed "dating", that I thought a different perspective was worth hearing. However, I feel that she has stated her case, and there is no further need for her, as a non-spouse, to be posting on these boards. I have sent her a private e-mail in regards to this matter.
Now, calm down folks. And I do seriously want to thank you for exercising restraint and responding with respect and dignity. (Even though I know you were jumping up and down wanting to let loose with language you know I would have deleted. LOL)
I personally think this was a good discussion...very thought provoking. Made me stop and think about what was OK and not OK for me and reading others thoughts open up other ways of looking at this kind of situation.
Think we all need to invade Cheval's place with bottles of wine, watch the sun set and talk about fixing his roof.
Good summary Amber. On the one hand, I find some of the responses harsh. On the other, it IS a highly emotion-fraught topic, and one might expect polarized opinions and there's nothing wrong with an honest expression of such an opinion. This is a good example of where respect for differing viewpoints becomes so important.
I guess I did not understand the hate. Here is a man who will never come here for help. Because of the reactions to the "other woman". And I worry both he and his kids will suffer.
I have kept quiet on this thread as others have a way of expressing their emotions and feelings better than I,. I'll just say my feeling are the same and with Nikki.
My opinion is that the husband with the spouse who has dementia should visit and post since he is the spouse with a wife who is suffering from dementia. Inspite of the strong opinions voiced to amicrazy (both supportive or not) we can offer him a lot of support, information and a place to vent. You're right blue, he probably won't visit because of the reactions to amicrazy, however if she truly loves him and wants the best for him, I would hope she could put aside her feelings about us and recommend this site as an additional resource for the support he desperately needs.
I said earlier how upsetting I found this thread. I kept thinking of this poor wife with dementia watching a strange woman with her husband and her children. I have no kind words to say. Outside the home is one thing. To bring it into this woman's home is quite another.
Amicrazy first post here was in reference to a question regarding the writing of a book. Amicrazy received some very good answers from the board members. But she continued on....discussing her relationship with this man. His wife had advanced AD with "young children".She presented herself as a woman providing strength to the children, the male and the ailing wife. Oh, a visiting Angel....coming and giving of herself for everyones benefit!
First, I don't believe teenagers fall into the category of "young children" These young children have to be so confused while daddy is playing footsie with the "visiting angel" in Mommy's bed. No discretion here....My heart breaks for this dying mother... I believe she does have some moments of lucidity.
I concur with jang* and several others....I find this thread disturbing. I will not read or entertain anymore post from Amicarzy. She needs to find another venue. ENOUGH
AS Nikki stated earlier, this site is for SPOUSES of ALZ and dementia victims and no matter the question or topic the insight is from OUR prospective and the spouse and caregiver of our LO who is so afflicted and honestly I don't think any of us would KNOWINGLY volunteer for this task again knowing what is does to every facet of our lives. You said you have gone into this for the purest of reasons but you also have said you are starting to have health issues....I would be careful there. We spouses have all warned one another to take care of ourselves in order to care for our LO. It is not easy to do. I would suggest you look in your area for an Alz Support Group where the members are varied, some are spouses, some are children caring for a parent, some are supportive friends and we have a gent in our group who is working with the woman's grown sons in caring for their mother. The mother and this gent were long time friends whose paths crossed again after they were both widowed. So the situation is working well for them and we all gain insight from what they share in terms of the caregiving issues. I really do think you may be better served in such a group where the dynamics are varied. Some here may think you are looking for a spousal blessing for your efforts. Others think what you are doing is very generous and still others of us would not dream of doing what you are doing and some may not welcome the help you try to provide while others will. I suppose there are no right or wrong answers here but I do think you are not going to get the best support here that you would with an Alz Support Group. Good luck to all of you.
Is this thread starting to divide the group of spouses? Will it be more difficult to share now with all this devision? Why is it not gone? Americrazy is not posting but everyone else is still making comments that to me will break this bond. Let it go! Surely we have enough of our own concerns to share and get help with!!
Amicrazy will not be posting here again. I think all that needs to be said regarding her and her situation has been said. I am closing this discussion, so we can get back to the concerns of us - the Alzheimer spouses.