I responded to your duckduckgo.com email, but it didn't go through.
Yeah. We're still in recovery. I can't see the end of that road. Maybe I should focus on the road and not worry about getting to the end, or whether there is an end, or whether I would recognize it if I bumped into it. In any case, the road feels like I-95 during rush hour.
Daniel, how awful for Maggie and for you to go through what you both went/are going through. No one is prepared to do that. No one. Even though it seems you don't believe it, you did the best you could at the time. We can always look back on things and see what different choices we could habe chosen. We can always look back and feel things differently. But looking back provides us with space and understanding we didn't have at the time.
Throughout our lives we all do many amazing things and we all do many things where we may wish we had a mulligan. When others look back and feel bad about past decisions, we extend them grace. We see that they have new perspectives from their experiences, we see in their hearts they are good people who are doing their best in the moment. We all need to learn to extend the same grace to ourselves.
It's clear, from your writing, that you loved and cared about and for your wife. You both had to endure an unimaginable, long period. I hope you can see that you did the best you could and that best was way more than enough. The fact that you learned things through this experience makes you even more prepared to handle whatever the next experience is. But it does not mean that your actions in the past were anything less than loving, caring and your best.
I wish you only love and contentment as you move forward.
I am very sorry for your loss, your feelings of guilt are my own. Im not a very religious person but I have faith in an higher power and feel your letter was ment for me to see.
My wife and I have been married 39 yrs this August, and we have two wonderful adult sons. My wife has had a hard life as she was the main care giver for her mother since our high school years. Yes we are high school sweethearts. Her mother fought an amazing battle with cancer from 1981 until 2002 and all the while my wife was there daily.
In her 40’s my wife started having odd medical issues and six years ago it really ramped up. Neurological and autoimmune issues, neither of which have really been figured out. All we’ve been told is the sheathing on her nerves is failing resulting in Bilateral Trigeminal Nueralgia and general neuropathy. We have been to countless doctors only to be told I can’t help you and she has had numerous procedures thus far with no positive results. Her pain level is 8-10 24hrs a day with zero relief. She has had serious allergic reactions to countless medications which has made finding any relief fruitless. Current test results are also pointing to one or more new issues, cancer, liver damage and kidney disease. We fly from Texas to the Mayo Clinic monthly because we’ve exhausted all options in Texas. Sorry for typing so much.
I just wanted to really thank you for sharing your experience. I so needed to read your words, you have no idea how much you’ve helped me.
I can’t think of comforting words that would measure up to what your wife and you are going through. I am heartbroken. During my wife’s illness, I attended a couple of meetings of, and read stories and advice from, people caring for loved ones. I urged my wife to talk with people living with debilitating illnesses, but she declined. She met with a psychiatrist (or psychologist, I don’t remember) a few times. But no matter how much support she and I received from family and friends - and we had a lot of support - she and I were lonely, each in our own ways. Some of that loneliness is just a fact of life - these were her health problems - but some of the loneliness is because our healthcare system is concerned more about profits than about people. Stay strong, brother.
My wife is a very private person in general and more so about her health issues. Once her health started really hitting her family and friends were supportive but friends have moved on. We don’t live close enough to see family (different states) and travel is not cheap or easy.
Our healthcare system is completely broken, there is no follow thru and if you’re not your own advocate you will be forgotten. Doctors happily take your money but if they can’t just prescribe a pill most have nothing more to offer.
We had so many future plans which have now become just getting her and myself through each day. I have to stay strong for her
Again thank you for sharing your experience it’s been more helpful than you know.
Totally agree with one needing 2 B their own Health Advocate. Both & Hubby can attest 2 that, especially in the USA...although we also worked/living Overseas in The Netherlands, HKG for 30 yrs....'91-'21 with MAJOR health issues in mid-life. Now permanently relocated 2 Portugal. We have PRIVATE Health Insurance & still need 2 B our own best Advocates.
I read your article on huffpo, that's why I subscribed. I lost my husband to a very long illness, and I think you were doing the same thing I did. My job for years was to keep him alive, try to improve his every day life, and try to make him comfortable. That meant constantly fighting, trying to get him the best medicine. The effectiveness of medicine he was on would reduce over time and then we'd have to find something new. Trying to keep him sane. Trying to keep him as healthy as possible. Fighting, fighting, fighting, fighting, fighting, fighting his illness every single day for years and years. When it was obvious that we were losing the fight, I just dug in harder. I think that's what you were doing, fighting the world to try to keep her alive. You weren't being selfish and I don't think she would want you to feel this guilt. I REALLY wanted to tell you this and I'm so glad I got the opportunity to tell you.
Jennifer, thank you. Family and friends have assured me that I did the best I could, but there’s a part of me that doesn’t quite believe that. It’s a struggle.
I don’t normally comment on stories, but I felt compelled to respond to this one. Grief will lie to you in so many ways. You look back and see all the things you might have done wrong, and it is all you can see, but it isn’t actually the whole picture. You must also look at the love, at the ways you tried to fix your mistakes when you found them, the ways you struggled to do right by Maggie, and the strength of your bond.
I know about the lies grief and depression tell because I’ve experienced them, though in an entirely different way than you have. About ten years ago, I lost my first pregnancy at 16 weeks. I then proceeded to lose the next two, as well, over the course of another year. I had to have a medical procedure to clear my first loss, because my body did not recognize what was going on. As part of that procedure, I was given a choice.
At the time, I did not understand the choice (between a shared burial and having my child’s remains destroyed like medical waste). I thought only of a mass grave someplace on hospital grounds or a quick burn. Later, when I learned exactly what a shared burial was, I deeply regretted not honoring my baby in that way.
For a long time, I felt like I had failed my baby in the only choice I was actually given throughout the process. The guilt was really strong (though my choice dealt only with remains and not with someone still alive at the time). I felt as though I had missed my “one chance” to honor my baby. “One chance” or “only chance” was the lie grief and depression convinced me of.
The truth is that although I would have chosen differently if I had known then what I learned later, at the time I did my best and my best really was enough. The truth is that I can’t change the choice I made. The truth is that from the moment I lost her, I honored her in every was I actually could think of, from that moment on. I have her a name(Josephine). I honored (and continue to honor) her and her siblings, Jude and Jamie, with flowers and other small tokens. I honor all three of them with a small family shrine and I always carry them in my heart. Their sisters who made it to birth are aware of them and, when appropriate, help me honor them.
Long story short (if that is even possible at this point): grief and depression lie and they blow everything out of proportion. You stood by your wife the best way you knew how. You made the best decisions you were capable of making, and you *were* capable (even if you doubt that now). You chose to honor her wishes and let her suffering end rather than hold onto her as long as you could. That is not a bad choice and you are not a bad person/husband/friend for making that choice. You chose to take on that pain so she could ultimately have some control in her treatment. Not everyone is strong enough to make that choice (I’m not confident I would be).
I don’t know what your faith is or what you believe happens to us after we die, but I think that whether Maggie is in “heaven” or part of a wave returned to the ocean, or whatever, she would not want to see you struggling with guilt as well as grief. From your story, it seems like she really loved you, too. I suspect she would want you to forgive yourself and to try to find some peace. I also encourage you to let go of your guilt. You can honor her and carry her with you in other, healthier ways.
As for finding peace, if I find it myself, I’ll let you know where to look.
Chris, thank you for your kind words and insight. I felt your story deeply. When Maggie was still alive, our older daughter lost a pregnancy due to placental insufficiency. We were devastated. We remember our loss.
You touched me deeply. First husband died in 1994. This husband is 91 and 15 years older. Married 30 years. So I am doing a lot of caretaking as he slowly, clearly winds down week by week. I’m not always kind, not always patient. We have some sparks of joy when he is himself but I also feel so much frustration that I can’t seem to be better, and that he mostly is in another world. It is very hard to give myself grace for being just a human being instead of a healing angel. Helping someone at end of life is a very humbling experience.
Daniel, So I'm not sure what caught my eye in your article initially, but we apparently have some common experiences. My wife, a Puerto Rican 🇵🇷 beauty queen, died in 2016, of 2 types of cancer both undetected until the very end. This is not to mention her other various health struggles such as muscular dystrophy, disautonomia, irregular heart rhythms etc. We were married for 22 years and I felt and feel the same things you wrote about so well. In a weird way, it was nice to find someone who probably knows exactly what I went through and am going through. If you ever want to connect you can email me at iamalongwayfromhome@duckduckgo.com. thanks brother, Matt
Matt,
I responded to your duckduckgo.com email, but it didn't go through.
Yeah. We're still in recovery. I can't see the end of that road. Maybe I should focus on the road and not worry about getting to the end, or whether there is an end, or whether I would recognize it if I bumped into it. In any case, the road feels like I-95 during rush hour.
Best to keep moving forward.
Danny
Daniel, how awful for Maggie and for you to go through what you both went/are going through. No one is prepared to do that. No one. Even though it seems you don't believe it, you did the best you could at the time. We can always look back on things and see what different choices we could habe chosen. We can always look back and feel things differently. But looking back provides us with space and understanding we didn't have at the time.
Throughout our lives we all do many amazing things and we all do many things where we may wish we had a mulligan. When others look back and feel bad about past decisions, we extend them grace. We see that they have new perspectives from their experiences, we see in their hearts they are good people who are doing their best in the moment. We all need to learn to extend the same grace to ourselves.
It's clear, from your writing, that you loved and cared about and for your wife. You both had to endure an unimaginable, long period. I hope you can see that you did the best you could and that best was way more than enough. The fact that you learned things through this experience makes you even more prepared to handle whatever the next experience is. But it does not mean that your actions in the past were anything less than loving, caring and your best.
I wish you only love and contentment as you move forward.
Wendy
Thank you, Wendy.
Mr. Spector,
I am very sorry for your loss, your feelings of guilt are my own. Im not a very religious person but I have faith in an higher power and feel your letter was ment for me to see.
My wife and I have been married 39 yrs this August, and we have two wonderful adult sons. My wife has had a hard life as she was the main care giver for her mother since our high school years. Yes we are high school sweethearts. Her mother fought an amazing battle with cancer from 1981 until 2002 and all the while my wife was there daily.
In her 40’s my wife started having odd medical issues and six years ago it really ramped up. Neurological and autoimmune issues, neither of which have really been figured out. All we’ve been told is the sheathing on her nerves is failing resulting in Bilateral Trigeminal Nueralgia and general neuropathy. We have been to countless doctors only to be told I can’t help you and she has had numerous procedures thus far with no positive results. Her pain level is 8-10 24hrs a day with zero relief. She has had serious allergic reactions to countless medications which has made finding any relief fruitless. Current test results are also pointing to one or more new issues, cancer, liver damage and kidney disease. We fly from Texas to the Mayo Clinic monthly because we’ve exhausted all options in Texas. Sorry for typing so much.
I just wanted to really thank you for sharing your experience. I so needed to read your words, you have no idea how much you’ve helped me.
Thank you,
Craig
Craig,
I can’t think of comforting words that would measure up to what your wife and you are going through. I am heartbroken. During my wife’s illness, I attended a couple of meetings of, and read stories and advice from, people caring for loved ones. I urged my wife to talk with people living with debilitating illnesses, but she declined. She met with a psychiatrist (or psychologist, I don’t remember) a few times. But no matter how much support she and I received from family and friends - and we had a lot of support - she and I were lonely, each in our own ways. Some of that loneliness is just a fact of life - these were her health problems - but some of the loneliness is because our healthcare system is concerned more about profits than about people. Stay strong, brother.
Danny
My wife is a very private person in general and more so about her health issues. Once her health started really hitting her family and friends were supportive but friends have moved on. We don’t live close enough to see family (different states) and travel is not cheap or easy.
Our healthcare system is completely broken, there is no follow thru and if you’re not your own advocate you will be forgotten. Doctors happily take your money but if they can’t just prescribe a pill most have nothing more to offer.
We had so many future plans which have now become just getting her and myself through each day. I have to stay strong for her
Again thank you for sharing your experience it’s been more helpful than you know.
Take care of yourself Danny
Totally agree with one needing 2 B their own Health Advocate. Both & Hubby can attest 2 that, especially in the USA...although we also worked/living Overseas in The Netherlands, HKG for 30 yrs....'91-'21 with MAJOR health issues in mid-life. Now permanently relocated 2 Portugal. We have PRIVATE Health Insurance & still need 2 B our own best Advocates.
I read your article on huffpo, that's why I subscribed. I lost my husband to a very long illness, and I think you were doing the same thing I did. My job for years was to keep him alive, try to improve his every day life, and try to make him comfortable. That meant constantly fighting, trying to get him the best medicine. The effectiveness of medicine he was on would reduce over time and then we'd have to find something new. Trying to keep him sane. Trying to keep him as healthy as possible. Fighting, fighting, fighting, fighting, fighting, fighting his illness every single day for years and years. When it was obvious that we were losing the fight, I just dug in harder. I think that's what you were doing, fighting the world to try to keep her alive. You weren't being selfish and I don't think she would want you to feel this guilt. I REALLY wanted to tell you this and I'm so glad I got the opportunity to tell you.
Jennifer, thank you. Family and friends have assured me that I did the best I could, but there’s a part of me that doesn’t quite believe that. It’s a struggle.
Hello, Daniel,
I don’t normally comment on stories, but I felt compelled to respond to this one. Grief will lie to you in so many ways. You look back and see all the things you might have done wrong, and it is all you can see, but it isn’t actually the whole picture. You must also look at the love, at the ways you tried to fix your mistakes when you found them, the ways you struggled to do right by Maggie, and the strength of your bond.
I know about the lies grief and depression tell because I’ve experienced them, though in an entirely different way than you have. About ten years ago, I lost my first pregnancy at 16 weeks. I then proceeded to lose the next two, as well, over the course of another year. I had to have a medical procedure to clear my first loss, because my body did not recognize what was going on. As part of that procedure, I was given a choice.
At the time, I did not understand the choice (between a shared burial and having my child’s remains destroyed like medical waste). I thought only of a mass grave someplace on hospital grounds or a quick burn. Later, when I learned exactly what a shared burial was, I deeply regretted not honoring my baby in that way.
For a long time, I felt like I had failed my baby in the only choice I was actually given throughout the process. The guilt was really strong (though my choice dealt only with remains and not with someone still alive at the time). I felt as though I had missed my “one chance” to honor my baby. “One chance” or “only chance” was the lie grief and depression convinced me of.
The truth is that although I would have chosen differently if I had known then what I learned later, at the time I did my best and my best really was enough. The truth is that I can’t change the choice I made. The truth is that from the moment I lost her, I honored her in every was I actually could think of, from that moment on. I have her a name(Josephine). I honored (and continue to honor) her and her siblings, Jude and Jamie, with flowers and other small tokens. I honor all three of them with a small family shrine and I always carry them in my heart. Their sisters who made it to birth are aware of them and, when appropriate, help me honor them.
Long story short (if that is even possible at this point): grief and depression lie and they blow everything out of proportion. You stood by your wife the best way you knew how. You made the best decisions you were capable of making, and you *were* capable (even if you doubt that now). You chose to honor her wishes and let her suffering end rather than hold onto her as long as you could. That is not a bad choice and you are not a bad person/husband/friend for making that choice. You chose to take on that pain so she could ultimately have some control in her treatment. Not everyone is strong enough to make that choice (I’m not confident I would be).
I don’t know what your faith is or what you believe happens to us after we die, but I think that whether Maggie is in “heaven” or part of a wave returned to the ocean, or whatever, she would not want to see you struggling with guilt as well as grief. From your story, it seems like she really loved you, too. I suspect she would want you to forgive yourself and to try to find some peace. I also encourage you to let go of your guilt. You can honor her and carry her with you in other, healthier ways.
As for finding peace, if I find it myself, I’ll let you know where to look.
Best of luck,
Chris S.
Chris, thank you for your kind words and insight. I felt your story deeply. When Maggie was still alive, our older daughter lost a pregnancy due to placental insufficiency. We were devastated. We remember our loss.
Danny
You touched me deeply. First husband died in 1994. This husband is 91 and 15 years older. Married 30 years. So I am doing a lot of caretaking as he slowly, clearly winds down week by week. I’m not always kind, not always patient. We have some sparks of joy when he is himself but I also feel so much frustration that I can’t seem to be better, and that he mostly is in another world. It is very hard to give myself grace for being just a human being instead of a healing angel. Helping someone at end of life is a very humbling experience.
Daniel, So I'm not sure what caught my eye in your article initially, but we apparently have some common experiences. My wife, a Puerto Rican 🇵🇷 beauty queen, died in 2016, of 2 types of cancer both undetected until the very end. This is not to mention her other various health struggles such as muscular dystrophy, disautonomia, irregular heart rhythms etc. We were married for 22 years and I felt and feel the same things you wrote about so well. In a weird way, it was nice to find someone who probably knows exactly what I went through and am going through. If you ever want to connect you can email me at iamalongwayfromhome@duckduckgo.com. thanks brother, Matt