Overwhelming guilt after 15 years

[Carly]

My father died when I was 14. He had been diagnosed with ALS (Lou Gehrig's disease) when I was just 11 years old. Up to that point, he had been the closed friend in my life. The only person who truly understood me. We shared many similar traits and although I have a great mother, he was a bigger part of my life in many ways.

 

The day they came home from the doctor and announced his diagnosis, was the first time I saw him cry. My world crashed around me. That night, I sat on my bedroom floor, begging God not to take him away. The idea was incomprehensible to me. My life would never be the same, and I have never been fully happy since that day.

 

ALS is a horrible, horrible disease. It slowly ate away at his muscles, beginning with his throat muscles first and stole away his ability to speak and eat within the first year or so. He began communicating with a notepad, and fed himself through a feeding tube. During this time, I slowly became more and more distant from him. I was so distraught by the idea of losing him, and seeing him wither away, that I grew cold and distant. Being at that young and confused age, when friends are the most important thing, I threw myself into friends and school and other activities, as I couldn't bear the pain - and embarrassment - of my dying father. I didn't want my friends to see what my family was going through. I wanted to be normal. I was angry and annoyed at embarrassed at what was happening to him, so I was cold to him when he needed me the most.

 

I loved my father immensely during this time, and I believe he knew this. However, I was so stubborn and lost, I did not know how to express it. The agony and guilt of this churned inside of me, and yet I could not force myself to just throw my arms around him and tell him I loved him. Even at the time, I knew I would live with regret for this.

 

All three of us- my mom, my sister and I - had a very hard time with his sickness, and he ultimately decided to stop feeding himself as he couldn't bear the pain we were experiencing, nor his own pain. My mom says he made that decision the day of one of my cross country meets, where he came in his wheelchair, and yet was unable to traverse the terrain to see me finish. It was so hard on him, and he told her that day he didn't want to eat any more. The knowledge of this makes me feel even more guilty. I should have embraced him and told him I loved him that day. I feel it would have made a difference. It would have made it easier. He had given so much to me during my life. He made me who I am. How could I do this to him??

 

During his final dying days at home, I hardly left his side. I sat next to his bed for hours at a time, wiping his head with a wet cloth, until my mom told me to get up. I wanted to stay there forever. I wanted to fix my mistakes, but it was too late. He was hardly conscious then. I still wonder if he knows I was there with him. My mom says he was aware, and he did know I was there. But even if he was aware, it doesn't make up for those months when I was so cold and distant.

 

I'm now 29 years old, and I have lived with overwhelming guilt and self-hatred that has completely plagued my life. I have a hard time being close to people, I have often pushed people away out of this guilt and anger, and I deal with constant feelings of not being good enough because of these mistakes I made so long ago. I would literally give anything in the world to just see my dad for five minutes, and tell him how much I love him and how sorry I am for not showing it to him when he was suffering so horribly.

 

My mom assures me he knew I loved him. She assures me that he understood that my personality was like that - that it was hard for me, at that age, to express myself. I know he knows I loved him. But it doesn't make up for the way I hurt him.

 

I worry that I will never find true peace because of this wrenching guilt. I read stories of people who feel guilty because they didn't tell their mother they loved her the day she died, or the like. That can't even compare to those years of being so cold to my dad.

 

If anyone can relate to this struggle, or knows what its like to lose a parent when they were too young to cope in a healthy way, please reach out. I really need support and someone to speak to who can understand. 

[MissionBlue]

I'm not young and I didn't go through the same ordeal that you and your father went through, but I understand the pain and the longing to want to redo the past and not make the mistakes that we all make at some point with our parents.  You have to give yourself the same compassion and forgiveness that you would give your father if he asked you to forgive him for not being the healthy parent you deserved.  It wasn't his fault that his health failed and it wasn't your fault either that you didn't know how to handle his tragic illness at such a young age.  14 is very young to have to deal with a parent who is slowly dying. 

 

I have a cousin whose mother died of scleroderma, which is also a horrible disease.  She was once a beautiful, vibrant woman, but the disease hardened her features into a waxy mask and her once graceful hands became gnarled and stiff.  She eventually was confined to a wheelchair.  She was taken to a faith healer, but he wouldn't even try to help her.  Her son, my cousin, was sixteen when his mother died at age 39.  He was stubborn and rebellious, as many youths are, even without the enormous pressure of having a parent who is terminally ill.   Before her last admission to the hospital, she wanted to say good-bye to her children.  She knew she wasn't coming back this time.  She had experienced a heavenly vision which made her feel her time was short.  Whether you believe that or not doesn't matter.  She had two daughters and a son.  She asked her son to give her a kiss before she left, but he wouldn't.  He's 65 now, and to this day he still cries when he recalls that day he refused to kiss his beloved mother good-bye.  His younger sister told him, "That's because you didn't want to say good-bye."  He didn't want to accept the fact that he would never see his mother again.  When he was younger, his mother would sometimes ask him to do things for her, and he'd complain saying things like, "Who do you think I am, your slave?"  He was just being a kid, and now he wishes he had been more helpful and patient, but when we're children we act as children.   As human beings, we often do things we don't mean to do, no matter how old we are.  This is the human condition.   Even Mother Teresa made mistakes.  St. Peter denied Jesus Christ three times, and yet Jesus still found him worthy enough to found his church.

 

If you can find a therapist who specializes in complicated grief, maybe that would be helpful.  I wish I could find one.  I've tried four therapists already and none of them have been quite what I'm looking for, but it takes time to find the right fit.  The last one I tried was the most compatible, but I kept waiting for her to start cognitive behavioral therapy and it just wasn't happening.  I think cognitive behavioral therapy might be helpful, from what I've read about it, just haven't found anyone who actually practices it yet.  Therapy is good, if only to talk to someone about your feelings.  Grief support groups are very good, too.  I tried three of them briefly, and they were all good, but they were too far away for me since I don't drive.  If there's a local priest or minister you can talk to, I would try that.  I have tried going to several churches.  It wasn't for me, but I still pray every day, because I believe in God.  I just don't know which is his favorite religion.  I haven't tried a Stephen Minister yet, but I've heard good things about them.  You might want to look into it:

 

http://www.stephenministries.org/

 

You don't have to be religious, just willing to let them talk to you about Jesus a bit.  They'll take you out for a cup of coffee or some other pleasant place so you can talk.  Women are assigned to women, men to men.  My half brother used to be a Stephen Minister and he took the young man he was ministering to on a camping trip with him.  They're more like understanding friends than counselors but they are trained. 

 

I cried when I read your post.  Even though I told my dad I loved him every day, it's still terribly hard to lose a parent.  It's devastating when you're young, but also heartbreaking when you're older.  I lived with my dad for 55 years, and I was with him practically every day of my life.  He was my world.  And yet, I still struggle with guilt feelings.  Guilt is a normal part of grieving, but when it lasts for years, then you need to seek help.  I have read that therapy for complicated grief has worked wonders for some people.  I wish I could find someplace that offers it.  And even if I did, I don't think Medi-Cal would cover it. 

 

I wish you the best, Carly.  Please take care of yourself.  We all need to be gentle with ourselves when we are grieving. 

[Carly]

Thank you so very much, MissionBlue, for your reply, for sharing your story and insight, and for sharing your cousin's story which is quite similar to mine. The first thing people say when I share this pain with them, is that I can't blame myself for being a selfish teenager, but I don't allow myself to make such excuses for myself. But I'm now starting to allow myself that forgiveness. My dad would have wanted me to.

 

It's funny, but it really has taken all these 15 years to truly start facing and dealing with these issues. I never realized how true the idea of "bottling up emotions" really is. I have kept some of my dad's old printed-out emails closed in a box, and opening them for the first time this weekend was a complete flood of emotions, so much that I became almost physically ill. That's when I wrote this post. Now, a couple days later, I still feel very strange - like I'm dealing with fresh grief. That is a very, very strange feeling. But I'm on a path to recovering from this grief.

 

Thanks again, and I'll think of you as you trudge through your grief. Be grateful for the valuable time you did have with your dad, and remember that he was grateful for it as well.

 

 

[MissionBlue]

Ever since my dad died, I've been getting tingly sensations in my arms, which I didn't used to have.  Even though I'm calm most of the time, I'm sure under the surface my psyche is teeming with negative emotions that are killing me.  And it's not coffee jitters, because I just started drinking coffee again recently, now that my insomnia is better.  Recently, I had a problem receiving an eBay order because I missed the delivery and the Post Office returned it to sender earlier than they should have.  The seller was trying to blame me, when the Post Office acknowledged it was their fault, because of an incompetent new employee.  I was so angry at this seller for blaming me, I was shaking when I wrote my reply to her!  This is not like me.  I think I'm more sensitive to being blamed about anything now that I'm on guilt overload since my dad died. 

 

I am very grateful for the time I had with my dad.  At the same time, once you've had a wonderful relationship with someone, it's so hard to lose them.  As I look back at my father's life, I realize that he was a beautiful person and an ideal friend, but not necessarily the most wonderful father.  I accept this though, because I was not a perfect daughter either.  I could relate to some of the things expressed by the young woman in the following video:

 

 

[keiko]

Carly - I can't even begin to imagine losing a parent at such a young age as I lost my parents in my late 30s, but I definitely can relate to the guilt that you describe.  My sister and I took care of our parents for almost 10 years, but most of the time I was doing it begrudgingly because I had my own anger issues with my parents from past differences (previous to them needing our care).  Because I had that underlying anger, I was never happy about the care giving role I had found myself in.  I was also angered that my mom was so sick and that my dad was starting to show signs of dementia and just getting old.  It just didn't seem fair.  My friends were all getting married, having kids, traveling the world and making their parents proud grandparents and our life was upside down with varying emergencies between my mom and dad.  So although I did the things I was supposed in terms of their care, I usually did it with such a bad attitude instead of being caring and loving and patient...I was the total opposite irritated, impatient, and basically cold most of the time.  I wonder all the time if my mom knew how much I loved her despite how angry I might have been.  I never showed her affection...didn't hug her or kiss her or tell her how much I loved her.  I regret not showing her how much I did love her and was so grateful that she was my mom.  I don't know if she really knew just how much I loved her based on how I acted.  Even the day she died, I just couldn't speak I was frozen even though I had so much I wanted to say...I did tell her I was sorry and I loved her but I feel like it was too little too late basically.  I think about it all the time and of course regret it deeply, but I knew I'd have to live with this one day and even then I couldn't stop/help myself either.  So although our situations are different I can also relate to the anger and being cold.  I don't have the answers but part of me wonders if that's a defense mechanism.  If we're angry then we can't hurt and be sad and who wants to comes to terms with illness and death of a loved one especially a parent.  I just think we all have our own coping mechanisms.  Ours happen to be anger and I like to think we both only did what we knew at the time in order to cope.  You're definitely not alone.  It's been 18 months since my mom passed and I still feel a lot of guilt, but I do have some good days too.  I don't think our parents would want us unhappy so hopefully we both can find a way to forgive ourselves.  When I think about it, I'm sure my mom already has.  I'm sure your dad feels the same way about you.  Big hugs to you!