My e-mail is overflowing with responses to today's Blog - I will eventually respond to all of you. Thank you for your messages.
If anyone is brave enough to post comments here publically, I welcome them, and I think it would be helpful for us to have a public discussion. If not, I understand, and I'll keep reading the e-mails.
emily CommentTime 34 minutes ago edit delete THIS IS EMILY'S COMMENT - WE APPARENTLY STARTED A DISCUSSION TOPIC AT THE SAME TIME, AND THEY BOTH GOT POSTED, SO I TOOK HER COMMENT, AND MOVED IT HERE. joang
It was very relevant. I completely understand what Tom's saying in his letter to his children. I have very much experienced the sensation that I would be sucked into the vortex of the slow fade from life that my husband is, inevitably, facing. And I resist that force. I'm clinging, and plan to keep clinging to the cliff edge at the top and will, eventually, drag myself out.
The subject of romance, before one's AD spouse has died in body, is a touchy one because it broaches areas of ethics that, for some, are the standards upon which entire lives are based. For some this means religious views, and there are others who--with or without religion--simply have inherent feelings of loyalty to the still-living spouse which would be violated by anything but the strictest interpretation of what it means to be faithful. And I don't think there's a one of us who would want to shake the ground on which any of the others of us are standing, so to speak.
So, it becomes a very personal and individual subject.
Philosophically, I would draw the line at doing anything that would risk paining an ill spouse. But when he doesn't know me, or retain any real recollection that I am his wife, what then? We'll just have to see when we get there.
Realistically, I can barely imagine such an opportunity arising, because I just don't connect easily, and my 25 years with Jeff (of which I would count roughly 20 to be really good years,) seemed like a rare, once in a lifetime, thing. At least for a non-connecter like me.
But, just as I cannot predict what life may throw in my path (could any of us have predicted what it already threw?) I can only trust others, at further along stages of the journey, to make their best judgments about where they find themselves.
In theory, I would do what Tom is doing. In practice, who knows? 1 to 1 of 1
First let me say I love my husband more than anything. He was not my first husband but he is my true love and soul mate. This journey almost devoured me and without the support of close friends and my caregiver counselor I'm not sure where I would be today. That said, I read the letter and truly believe that each of us will face the final stages in our own way. I have never been alone, nor do I want to be so when the time comes that my LO no longer knows who I am and must be placed in a NH I will if given the chance enjoy a companion. I know my LO would want me to as I would him if the roles were reversed. Life is precious and short and I know that we must grab it and enjoy it the best we can in every given situation. I give Tom and Mary a lot of credit for coming forward with their story and hope they continue to enjoy their relationship and their love.
Joan, My biggest fear would be to face this or some equally devastating health experience with a new person in my life. At 66 years old the possibilty of once again becoming a caregiver is chilling to say the least. I think the adage "once bitten, twice shy" applies to me. DickS
Very interesting perspective. I must say that I have thought about that too. I know I mentioned this once before on the old boards, but for those who haven't heard it- my MIL worshipped my FIL. I came into their lives when my FIL, although only 59, was "old" and ill. She took care of him until his last breath, barely two years later, never complaining about it (and believe me, she complained about everything else ALL of the time). 5 years after he died, she said something to me I never forgot - "Why would I want to get married again and have to take care of someone?" At the time, being in the deepest throes of "feminism", I couldn't understand why a woman had to "take care" of a man. Of course, I now understand what she was talking about.
However, craving companionship, conversation, having someone care about us, I think is natural, and when we have gone through so much pain and loneliness, it is my feeling that we would welcome someone to share a little of life with. No easy answers on this one.
What Tom and Mary have found is one of my biggest dreams. I would feel no guilt at all but thankfulness. Like most, I can't really picture a scenario that would lead to such satisfying companionship but I would welcome it. I would never do anything that would hurt my DH but such a relationship in our situations would not have to be hurtful.
Yes, Hildann, I agree with you. I also agree with Dick though. I'm not sure I'd ever marry again. I really don't want to ever do this again. The flip side is that I never want anyone to be in the position of having to live with me if I should decline in such a way. So I feel like, even if I had someone with whom I could be romantic friends, I'd be inclined to maintain a certain distance and independence.
I also agree with Dick. I have said this to myself many times. I would not want to find a new love at this stage of life and while my husband is living. I think that would be cheating in the worst way, while your mate is helpless and cannot defend themselves. How horrible.
On another note, I also would never want to marry again after my dear Jim dies, if he happens to die first, simply because I absolutely would never want to take the chance of having to deal with Alzheimer again. I have said this many times. Before this disease I most likely would have wanted another mate because our life has been so wonderful, but not anymore, I would rather die alone than to chance this again.
Joan, as I read Tom's poignant letter to his children, I was struck by the total inequity in this aspect of Alzheimer's disease upon the marriage relationship of the sufferer and his/her spouse. Just recently, the caregivers were subjected to newspaper articles as to the selfless love exhibited by former Supreme Court Justice Sandra Day O'Connor. Her husband , who is a Alzheimer's disease casualty, has apparently forgotten his love for his legal wife, Ms. O'Connor, and has formed a love alliance with another patient in the nursing home. The children, staff, and observers do not blame the husband for his behavior. In fact, the writers and others were accepting and even encouraging in their remarks that it was comforting to know that the husband had some happiness and joy in his liason with the other woman. They had admiration for Ms. O'Connor's acceptance of his realistically abandonment of her for someone else as he apparently does not remember he and his wife's conjugal love.
I am not making judgment on this situation as it is not my desire or place to judge anyone else on their actions in such a tragic and often occurence in this disease. However, I want to point out that to me the fact that when the well spouse has the opportunity for some comfort and even happiness in a formerly dark and joyless existence then censure and condemnation is leveled at the person. I feel the same understanding and empathy should be given to the one who has compassionately given sometimes years to in sacrificed daily lives to their ill spouse. They had vows but in reality to a different personality than the beloved stranger who now lives in that individual. Especially if the spouses are relatively young, the well spouse has an especially bleak view of his future.
I do believe if the one suffering from Alzheimer's can still function cognitively and is still aware of the marriage relationship then the well spouse needs to be subjected to the same standards as any violation of marriage vows. This applies also though to the ill spouse. If he/she is aware of the relationship to the other, then effort must be made to sever the budding romance. Whether the ill one can or cannot inhibit impulses, he/she is emotionally destroying his/her mate and causing much pain in a thoughtless betrayal. However if others disagree, this two is only my view and not judgment as to a particular person.
I would hope the ones intimately involved in Tom and Mary's story will see his needs and right to some happiness and be as compassionate to him as they would his wife if she had formed a similar relationship with another patient. .
Thank you Carewife. I think you stated that well. Requiring that the healthy spouse remain free of emotional connections that could lead to love when the ill spouse has moved beyond recognition seems awfully harsh to me. But again, I would add that each person in a situation must act according to his/her own conscience.
My husband is in the early stages of MCI and is 99% functioning. But there are major parts gone in our relationship. We can only talk about the weather or news - no intimate discussions and certainly no intimacy physically. He gets angry so easily and whatever it is, it is my fault. I am pretty sure I would not have a physical relationship with another person, especially at this stage, but it sure would be nice to feel attractive and interesting to one of the opposite sex and to be able to have a discussion of some depth. I miss that type of intimacy so much and I don't think it will get any better. It is lonely. I think that it has to be a personal decision what one choses to do. No one knows what it is like to walk this path and they sure shouldn't judge on one wanting to be loved and loving under these circumstances.
It has been quite a while since I last posted. I felt that I definitely had to respond to Joan’s “Tom & Mary” blog.
I believe that most of the posters on this and other boards recognize that although Alzheimer’s follows a pretty much well defined path of destruction though its victim’s brain, it does sometimes take little side excursions that some of us never see. Partly because of this but mostly because we, the caregivers, are exponentially more different on the inside than we are seen side by side, our diverse reactions to the same or essentially same conditions and experiences can be dramatically different.
I believe that “Tom & Mary’s” desire and ability to seek or accept life in the midst of this tragedy is not only commendable but laudable. The far greater sin would be to offer additional lives and souls at the altar of Alzheimer’s. By and large, most of are children of the “feel good” generation. Remember the 1960s and “if it feels good, do it”? While I most certainly believe in vows and responsibilities and commitments I draw the line at martyrdom. I see no reason for the “Tom & Mary’s” amongst us to be impaled on the lance of Alzheimer’s. They have found a way to not only survive but to live and I wish them well.
I commend them for doing what is necessary for them to enjoy what is left of their lives. And yes, I do mean “getting on with the rest of their live”. Plainly, their marriages were terminated by Alzheimer’s. No need to have their lives terminated also. I applaud the “courage” exhibited by “Tom” in addressing the concerns of his children. I hope it is possible for him to get his children to read Joan’s preamble to the posting of his letter. Many of us have felt and are feeling the same and like emotions “Tom” has felt. Others unfortunately can only peek at what almost certainly is in store for them.
I want to thank “Tom & Mary” for sharing their story with us. It is only thru open and frank discussions on this and the other problems we are all facing that we can gain the knowledge necessary for us to survive this battle. While their “solution” may not work for others it is proper and right for them to share with us. No one should ever feel fear when posting here. “For better or worse” we are, if not friends, companions, and family; we are comrades in arms in the battle. God bless all.
This quote from your post is, for me, the core nugget of what you're saying:
"While I most certainly believe in vows and responsibilities and commitments I draw the line at martyrdom. I see no reason for the “Tom & Mary’s” amongst us to be impaled on the lance of Alzheimer’s. They have found a way to not only survive but to live and I wish them well."
DH and I had the "what if" conversation and we both agreed that if one of us was ill to the point that we no longer knew who the other person was, etc.... Then we gave each other our permission to "get on" with our lives, what ever way that might be.
Man, we are only here a short time live it to your very best.
Bill - I too draw the line at martrydom. I've seen too many people wear themselves down to nothing and then have nothing left to give. Not a good life.
I think being a martyr is highly overrated, besides it can kill you--not that I didn't sacrifice for my DH well beyond my own needs. From the beginning I knew I would not leap onto his funeral pyre, it wouldn't help him and it wouldn't help me.
As I've already posted, my DH did the Justice O'Connor thing to me and I never blamed him, never tried to chg anything, never jealous--it was what it was. Long before I knew what AD really was, I'd met some wives who had significant others while still being the primary caregiver to the spouse. I really didn't think much about it--wasn't my problem! Altho I didn't understand how they could do it, after years of being the CG, I certainly did.
The thing is--marriage vows say 'til death do us part.' But I felt my marriage itself had died, thru no fault of his or mine--it had died. There was nothing left between us that made a marriage--nothing. I wish there was, but a marriage has to be more than vows. And I loved him, but it was a different kind of love. And much as I loved him and didn't regret caring for him and would do it again, I would never have married him in his AD state. Who was this very odd frightening stranger? I've already said that I called myself a 'married widow.' Who can imagine such a life except those of us who have lived it. So where are you when the marriage has died, but both partners are still alive?
I know a young married man whose mother died many years ago. His father has another woman in his life and the young man cannot accept it. I've tried to tell him that his father has every right to be with another, but he'll say, 'but she was my mother.' I think that children--by and large--cannot accept that their parents are sexual, ever loved anyone else--AD or not. I know I felt that way about my parents, don't many of you? So I'm not sure it is always that one spouse has AD and the other has needs, I think a lot of it is just the way children respond to their parents--and how certain others could never be a Tom & Mary.
I have found the points made in this discussion very valid. I started this journey in 1993, long before most of you and never felt comfortable talking about things that I know others could not understand, it was just my nature to do it my way. And now it may be well after the fact, but these conversations have let me express many things that I kept to myself, things I could not say when others were telling me nothing was wrong w/DH or reading about AD CG's crying about losing a dear mother or beloved g'parent. It may be the same disease, but it is not the same thing--not by a long shot. So once again, let's hear it for Joan!