I serve on the Maryland Traumatic Brain Injury ADvisory Board to the Governor and actually have a meeting Wednesday with two state Secretaries (Mental Health and Hygiene as well as Department of Disabilities) to discuss a revised definition of brain injury that would include non-traumatic situations, such as yours. Our Board recommends this change to be more inclusive and, specifically, help brain injury survivors qualify for inclusion in the waiver program. We estimate there are currently 2,000 brain injury survivors residing in Maryland nursing homes who, we feel, would be more appropriately served by being in a home-based or community-based setting. Your thoughts? Ricke Zeidman
Thanks for this question. We have grappled with this in Virginia. With the aging population, non-traumatic brain injuries will only increase. As you know, nursing homes are not always equipped to handle these instances - it's not a good fit for the survivors sometimes and not helpful to the other folks in the nursing home. We supported a waiver effort in Virginia, and hopefully, that will come to pass one day for our state. I wish you luck and thanks for your service.
What motivated you to go public with this very personal story and open yourself up to all kinds of criticism?
Great question. What families look like - it's an important conversation that we will need to keep having as caregiving responsibilities change. I hope that our story underlines how helpful it is to keep an open mind and heart, no matter what life throws you. I am sorry for the critics - I don't expect everyone to understand or approve. All of our decisions were made inside of our faith, and by trying to do what's right for Robert and our girls. And I hope it helps some folks in tough situations.
My name is Rebecca Robins, I'm one of Hopie's very good friends from Richmond VA. My mother just showed me the article in the Washington Post, I thought that was the sweetest thing ever, and would like to ask how Hopie and Nell are adjusting at their new school. I text Hopie all the time, I really miss the Melton clan down here in VA. I want to thank Hopie for being such an awesome friend to me, thanks.
Rebecca! Thank you. We miss you and your family and Richmond -- you were part of our critical support network there. Hopie and Nell are doing great and send their hugs.
I have no question. I just want to share my huge appreciation to the author and to Page Melton Ivie and her family for representing the best of humanity to which we can all only hope to achieve. Etta Robin
Thank you so much!
Thank you for an excellent article. This may be an awakening as an example to what we may see more and more. As people live longer lives, we may well see spouses with diseases, dementia, etc. where the marriage has collapsed (the love may or may not continue) and the marriage remains for the health benefits (and/or the continuing love) while the other spouse has moved on to a new relationship. I presume there are no figures on how many similar situations like these there are, yet, I suspect we will be seeing this more often. I know this was more of a comment than a question, yet I would ask for any feedback as to whether you think this is something that is not unique but may be more prevelant than most think.
Based on the number of comments we received from readers relating similar situations, I'd say you're right, there probably are many examples of creative, or nontraditional, arrangements where people are trying to make the best of a difficult situation.
The National Family Caregivers Assn estimates there are 65 million people caring for family members/friends with chronic or critical illness and injury. This number will only increase -- and I have met scores of folks in similar situations and they are heroic. I wish more people knew about them. I hope we are reaching them positively with this story.
Great story! But, this situation happens in the other direction, too. Supreme Court Justice Sandra O'Connor had to put her husband in an assisted living facility in Arizona. He promptly forgot all about her and their children, and fell in "love" with "Kay," another resident. This didn't lead to divorce or conjugal relations, but it did mean that the marriage was effectively over.
Yes, that was another sort of unusual love story. If I remember correctly, Justice O'Connor supported the relationship because she saw it brought joy to her husband.
Page, if you were in Robert's situation (ill) would you also want Allan to move on with his life or feel that he should stay married to you?
I would want first, what's best for our children. And I would want my spouse to be happy. We benefited from our situation by expanding Robert's support network -- ensuring his continued good care and that is a huge comfort to me and Robert's family.
No question. Just a huge thank you for your very lovely article. It almost captured the turmoil that the Melton's have gone through. I don't think anyone could adequately describe the stunning presence Page makes or the grace and dignity she processes. She is simple the most amazing woman I have ever meet. Her girls are quickly becoming just as wonderful. Richmond is a bit pale without the Melton-Ivies. But we could not be more delighted with their happiness.
Thank you for your comment!
It is my understanding that many health care insurerers do not cover brain injuries. I do not need to know your personal situation, yet I wonder if this is correct and, if it is, what do many uninsured with brain injuries do and isn't this limited the care that could be provided?
A lot of Robert's care was not covered. We would love to see greater coverage of cognitive impairment - this is a huge issue for folks with brain injuries. A lot of survivors end up in Medicaid, possibly in a nursing home, possibly worse.
What a beautiful story. What could have been such a tragedy has a silver lining. Page, your family sounds so strong and instead of fracturing over this, they met the challenge head on and have emerged stronger. Thank you for sharing.
Thank you. Our new family is a good group - I think the girls are flourishing and Robert has a deeper support network. We really have been so fortunate, with family and friends, and folks just understanding that our decisions helped us all.
Dear Susan, Thank you so much for this uplifting story that can be the premise for so much hope for others. As a nurse that works in a rehab & long term facility I couldn't stop reading it. By the end I was tearful. Good for you for showing us a side of life that is not all grim or violent. You are to be commended. Judy Varley, Niantic, Ct.
Thank you -- I appreciate the comment!
Wondering when we'll be seeing the movie of your expeience. Sincerily, Justine
Funny you should say that. I was at the movies a couple weeks ago and there was a preview for a new movie about a wife who suffers brain damage after a car accident. It was called "The Vow."
Revealing Mr. Melton's medical issues was central to your story's poignancy, yet you did not address how his consent to release his personal health information was obtained. He is obviously not competent to consent, yet if it was provided by Ms. Ivie (or anyone else) there is an inherent, and potentially self-serving conflict of interest on her part. Probably not a HIPAA violation, but certainly an ethical one. Would you elaborate on how consent was obtained, and who represented Mr. Melton's interests in preparing this story?
Very good question and one the Post editors, Page, and I talked about a lot. Page is and has been Robert's legal guardian so she gave consent on his behalf. She said she always grapples with the question of "What would Robert want?" when making such decisions, and felt Robert would want to cooperate with such a story. Beyond that, I contacted all of Robert's family members -- his father and four brothers -- to see if anyone objected to my telling the story, and no one did.
Thanks for the question. I did struggle with this. Robert was a very thoughtful reporter, always looking at things in new ways. I honestly believe that Robert would want people to look at the issues raised here -- traditional families, disabilities, relationships -- in a light they might not have considered. I also think there is a powerful lesson here for our girls and I believe he would have wanted them to understand.
Just a comment: I was in a similar situation with my husband, who died almost three years ago. Those who criticize haven't lived through this special kind of horror. You're an honorable woman doing the right thing for everyone involved, and I applaud your strength and courage. I'm proud to be a fellow Virginia mother and wife.
I am so sorry for what you have lost and I appreciate your reaching out. I am sure you grieved a great deal in private, which is so hard. I hope that you finds good things ahead in the New Year.
I thank you from the bottom of my heart, Page and Susan, for making the public aware of the difficult road which spousal caregivers travel. As the spouse of a quadriplegic, I totally understand how excruciating it can be to balance a sick husband's needs, your own needs, and your children's needs. I was chagrined by the judgmental and hostile comments posted by people who truly have no idea what our struggles encompass. As medicine evolves and more and more people survive with severe cognitive and/or physical deficits, we all need to think "outside the box" for compassionate solutions. Thank you for sharing what is working for you. It brings hope to others who are feeling despairing and alone. I'd also like to recommend the Well Spouse Association as a wonderful peer support organization for spousal caregivers. Our motto is "when one is sick, two need help."
Thanks for your comment! I have heard of the group and am glad you are calling attention to it. Thank you for sharing your struggles, and I wish you well. Please know that you are not alone. I hope, too, that you ask for help sometimes!
I've read the article twice. It presents an incredible dilemma and I am so very sympathetic to the circumstances. The gist as I see read it- a happy marriage is dealt a severe blow and, not liking the hand that was dealt, one spouse decides to move on. My question is this: to what vow is it that you are being lauded for holding true?
I appreciate this question, and I understand this is a sticking point for a lot of folks. I would disagree that we have "moved on." Robert is central to our lives and now benefits from a stronger support network than he had before. Not a justification for anything - just the fact of our lives how. I will take care of him forever. In the context of my faith, I am standing by him and with him. I am fortunate to have found someone who will share this with me.
What was telling to me was that Robert's family was so supportive of Page's remarriage, and felt she was in fact still honoring her vow to Robert. Robert's father said he was confident that, no matter what, Page would always be there for him.
When you say you made the decision within your faith, could you explain that some more. Many would argue that breaking your vow by ending your marriage isn't compatible with any faith. How did you reconcile it with your faith?
Thanks for the question and I understand that my choices are not for everyone. I had long discussions about the meaning of those vows and I concluded that I am standing by Robert in every sense and at the same time, ensuring our girls are cared for and that Robert will always be cared for. Again, wasn't what I was looking for, but I have to make peace with the fact that our new life helps everyone.
Page, as a high-school friend (and fellow A-Blaster) of Robert's, I write only to say that I think you've made the very best of what you could of a terribly difficult situation. My very best wishes to you all. (And thanks to Ms. Baer for telling the story so well.)
Thanks. One great thing about the story is reconnecting with old friends and colleagues. Appreciate it and wish you well.
Do you think some of the harsh reader comments this article received are due to a double standard for women? After all, the socially/religiously conservative Rev. Pat Robertson contended a few months ago that it could be understandable for a MAN to divorce his wife if she had, say, Alzheimer's disease and was no longer able to fulfill her wifely role, so he could marry another woman who could. Shouldn't this attitude then be equally true for a woman with such a disabled husband?
That's an interesting question. I wonder what other readers think about this?
Did Susan interview any of Alan's children? Are all of them as happy with the arrangement as Page and Alan are? Why didn't Susan look at Alan's divorce in the context of honoring a sacred vow given that he too had to divorce in preparation for a life with Page.
When I was in St. Louis reporting the story last August, I met and talked to Allan's sons, though I did not conduct formal sit-down interviews with them. Charlie, especially, (the youngest son) seems to have a wonderful relationship with Robert. Divorce is a common occurrence in our society and I felt what was unique about this story was the relationship among Page and Robert and Allan.
You said in your article that you used to imagine being reunited with the Robert who read poetry to you and handed you your babies...what do you imagine now? Do you imagine you, Robert and Allan in the after life (if there is such a thing) and what does that look like. The complexities of the various emotions, forms of love, loyalty, etc. that this experience embodies is unbelievable. I was moved deeply. Thank you.
Crowded! With lots of good feelings.
This was a very touching story. It reminded me of another similar story of Sandra Day O'Connor's husband, who entered into an assisted living facility for Alzheimer's, only to forget her and fall in love with a fellow resident. Heartbreaking in a way, but uplifting, too, as your story demonstrates. Thanks for writing it.
I am familiar with Justice O'Connor's story. We have so many things to consider as folks live longer and survive critical injuries and illness. Her story broke my heart and I related to it, too.
Have you heard from any families where the husband was as profoundly handicapped as Melton and lived on for decades, while the wife stayed married to him and raised their children on her own till they were grown? If there are any, how much help did the wife need, and do the grown children feel their mother made the best decision for them (or do they feel they were deprived of their childhood because of it)?
Haved talked to lots of folks in similar, though not identical, situations. Our situation works only because of the figures and circumstances involved: Allan was unusual in agreeing to help shoulder my responsibilities. It's hard to find folks like this and I have talked to lots of caregivers who wish they had similar strong figures in their lives. I felt comfortable with these decisions because of support from church, family and friends - folks who knew Robert well.
Anyone in this situation faces a very hard road, financially and emotionally. I knew women who have not changed their marital status and I admire them for making decisions that work best for their families.
I respect Mrs. Ivie Melton tremendously; this is not meant to criticize. However, I am concerned about writing a story that publicly discusses the deterioration of a professional, brilliant man. It's a wonderfully written, important piece of journalism, but one of the main subjects really could not give his full consent about the article. This is uncomfortable for me; I would not want the story to be about me in this situation. I know it is an important topic ; but the ethics of these types of stories should be an ongoing discussion.
It is very hard to read about Robert and I agree his situation raises many ethical questions that we have grappled with through the years. It breaks our hearts all of the time. He has a brain injury - it's an undignified condition for sure. So many people suffer them, and yet we tend to not talk about it. Perhaps talking about it more - think of the thousands of veterans coming home with traumatic brain injuries - could help call attention to the many challenges survivors and their families face.
Thanks for telling your story. When the doctors told you they could bring your husband back, but seemingly advised against it, what went through your mind? And, was your decision instantaneous?
I have talked to a lot of poeple faced with similar decisions. You have no time to decide - you go with your gut, which is always, life. The whole situation was so improbable at the time. I know why the doctor asked, but I believed if anyone could come all the way back from an injury that bad, it would be Robert. We are so fortunate to have him in our lives.
Do you ever re-think your decision to resusitate Robert, even though the medical professionals warned you that he would not be himself? Would you make the same decision again? Do you have your own end-of-life directives - do you want to be resusitated and have you discussed your decisions with your own new husband and children?
I have re-thought everything -- hundreds of times. I would, though. I know our story has prompted many folks to have those hard, but necessary, discussions with their spouses, kids and parents. Important conversations to have.
I thought it was going to go post-modern : I WANT, therefore I will disregard my vows (since vows have no meaning, they are just archaic plot devices for our wedding performances and such). However, I was touched by the story and by the committment on everyone's part. I think it would have been best had Ms. Melton and Mr. Ivie not dated until the divorce was final to make the break clearer. Mr. Ivie is a saint for taking on these circumstances and I have a renewed optimism for humanity after reading this.
Thank you. I'm glad you were touched by the story -- as I was upon meeting and talking with the family members. It was hard not to be struck by the thoughtful, caring, and dignified way they all treat and look after one another.
I read the story on Sunday and was just blown away at the love in the family. It teaches others to stick together and find a solution for all involved in a terrible injury to a loved one. I really appreciate this family and believe Page made the right decision for her family.
Appreciate your comments!
Hi, I live in Washington, DC, where it's hard to tune out the ugly things said about marriage and family in recent days (and all the time). I think your story represents what real families are made of - caring deeply about each other and work to support each other, no matter what life throws at you, and no matter what it looks like to outsiders / the public. I'm so inspired by this. Thanks to you both for sharing this story.
Thanks very much. Yes, a number of readers have noted that the story seems to bring up the whole debate over the definition of marriage.
Hiya! Loved your story! I live in Kansas City, MO, how are you liking St. Lou? Glad to have you as a neighbor, thanks for sharing your touching story!
We are enjoying Midwest living. All of us - including Robert - are following the sports here and enjoyed the World Series. Lots to do, and Robert has especially been enjoying the museums and parks. Folks are very friendly here and have made us welcome. Thanks!
Hi Page, It's Susan Swecker from Richmond. I do not have a question, but I wanted to thank you for sharing this story. It was the subject yesterday at a brunch I attended with a bunch of your and Robert's friends and acquaintances. Everyone was moved by it and happy for the entire Melton Ivie family. I wish all of you the very best in the years to come.
Susan - Thank you for touching base. We miss seeing you all in Richmond. Robert loved his colleagues and friends. Best to you.
Hello. First of all, I am truly humbled and amazed at your ability to go through all of this. My dad just died after a long and complicated neurological illness. My mom is grappling now with whether she did enough, was enough, gave enough. I try to reassure her that she absoultely did, and that we only moved him to hospice when it became clearly necessary. But I am wondering if you have any wisdom to offer her as a wife that I don't have as a daughter?
I am sure your Mom did the best she could -- and your Dad knew it and felt her love. He died knowing that he was loved -- what more needed? Give her my best wishes, please.
Not so much a question as a note to tell you how deeply touched I was by your story. It takes great strength in the face of such devastation to come up with such a wonderful plan to meet everyone's needs. Congratulations!
Thanks for touching base and for your comments.