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Guilt To Live With Now

DebbyS
Posts: 21
Joined: May 2004

Hi, I just lost my mother in March 2004. I was her primary care giver also the one child who remained with her at home throughout her life. My Mom had lung cancer and even though we never got to take the brain CAT scan we believe it moved to the brain. MY story is this. The last month she lived I was sitting up all night for several nights in a row and then going to work at my job for 8 hours. MY brother and sister in law stayed with Mom while I worked and when I came home they would leave and I was her care giver. The last month she lived was very hectic, she was hospitalized 2 times in March for a kidney infection. Mom began the last month having panic attacks of some sort, scared of everything and everybody, crying and screaming uncontrolably, she didn't sleep for days at a time, she couldn't keep her train of thought, she moaned and groaned 24/7, every waking moment, but when asked if she was in pain, she said NO. Me being so fatigued, stressed out, would complain or yell at her about the moaning and groaning. It was starting to drive me crazy. I should have been more understanding and patient with her. I hate myself now every time I think of me yelling at her. I pray my mother knew it was the exhaustion and not me when I did this. I WILL NEVER KNOW if she realized this. Now I am living with this guilt because I feel I was mean to her when she needed me the most.
We had the darn dr's just 3 weeks before she died telling us her cancer was getting better from the chemo but yet she was developing all these other symptoms which they ignored when I told them. Ahh, we think it is neurotic depression they would say but yet they did not even treat that. We (family) really did not know that she was that near her death. I brought her home from the hospital at 6:30 p.m. Wednesday evening, March 24th and found her the next morning around 6:30 a.m. March 25th. Losing my mother and best friend has been the most horrible pain I have ever had, I miss her so much. Our home is just a house now without her and probably will never be a home again. I come home every day from work and I cry and cry. The pain is not getting any easier. I not only have to try and cope with losing my mother but I have to try and cope with my guilt too. How could she have forgiven me when I can't forgive myself. I pray every day to somehow let my mother come to me and tell me she understood it was the exhaustion talking and not me, to tell me she forgives me and that she still loves me. I want to tell her I am sorry and that I love her more than anything and always will.
To all you primary care givers, please get some help and relief with your love ones, don't end up like me, regretting some of your actions. Remember, we cannot take back any unkind words, its best to never say them.

beep
Posts: 18
Joined: Apr 2004

Debby,
I wish I could give you a hug. Please don't be so hard on yourself, you know, and your mother knows, and GOD knows that you loved your mother and that you were there for her, and it was the exhaustion and the stress that made you act the way you did. I know you feel guilty, but please don't be so hard on yourself. Your mother was so lucky to have someone like you to take care of her.
I feel like I must have been drawn to this board tonight. I am the caregiver to a 68 year old man, who is not my father (I am 34) but he is like a father to me, and he practically raised me. His entire family lives in NY so my sister and I are taking care of him. He had rectal cancer 2 years ago, and now it is in his bones and he also has 3 brain masses. They are giving him radiation to the brain tumors, and are talking of beginning chemo. He fell at his home a week and a half ago, and thats when they discovered the brain tumors. He is now staying at my sisters house and I am driving him every day to his radiation. It is a long drive, and I am spending tons of money on gas, and have given up everything I do in order to do this for him, and I am beginning to feel a little frustrated. He is getting cranky from the steroids they are giving him. After his treatments he wants me to take him here and there, and all over creation, and has no sense that he might be incoveniencing me, and I'm getting upset. I have to remind myself this is his life, that without this radition, he probably won't last even a month. We are going to have to get with his real family in NY and figure out a plan of action. I love this man almost like a father, but I don't really think I can give him the care he needs and I don't know what to do about it, and I am so stressing about it. So don't you go feeling bad. Every caregiver I know has these feelings, and it is normal. It is so hard. You literally give up your life as you know it. Please ease up on yourself and know that you did what you could do. I know you are devastated and that you miss your mother. I'm sure no one doubts your love for her.

Thank you for helping me to realize that I do need to find some help some way. I'm just sorry that you had to go it pretty much alone. My prayers to you.
Lee Ann

Galliano
Posts: 46
Joined: Mar 2004

Dear Debbie
I am so very so sorry for the loss of your mother. I lost mine last August, so I understand the sadness and pain. You are still very much grieving. You feel guilt over those last times with her.....in time, you will let that part go. It was a horribly painful time for not only your mom but for all of you, and as the daughter who lived at home with her, it must have been devastating to you. MOM'S ALWAYS KNOW!!!! Your mom knew then and she knows now just how much you love her. Maybe if you try to make yourself concentrate on the many years you had with her before her illness, or go thru family photos of fun times, or share growing-up-stories with your siblings. These are some of the things that worked for me. My mom's medical situation was different than yours, & I won't get into that now, but after a short illness that drs didn't consider life-threatening, she had a stroke and died a week later. We were all unprepared for this. Many times over the months I've wondered if over the years she had realized just how much we all loved & appreciated her. SHE DID. SHE DOES, I'm SURE of it, and I've seen MANY signs to let me know. I think when you relax a bit and quit beating yourself up, and enjoy reminiscing of happy times, that you will 'see' something that will let you know that your mom is still with you. You must believe. I wish you peace, and I'll keep you in my prayers.
Love, Pam
p.s. only an extremely loving daughter would be so anguished about this.

rosie43539's picture
rosie43539
Posts: 56
Joined: Mar 2003

Dear Debby,
My heart goes out to you. I am the primary caregiver to my husband who has kidney cancer. He just passed his 2 year mark since diagnosis. Please don't beat yourself up, being a caregiver is the toughest job there is.Sometimes the frustration of this disease makes me want to pull my hair out. One day spills over to another and it is very exhausting, both physically and emotionally. Believe me when I tell you, there is that special spot of peace somewhere in your life. Your pain and grief is very new still, give it some time and I am sure it will get better. And I believe your Mom can see you now, so she knows that it was only frustration and fatigue talking. Forgive yourself sweetie, please forgive yourself.
Love and Prayers
Rosie

DebbyS
Posts: 21
Joined: May 2004

Thank you all for your kind words. They mean alot to me. Its been 10 weeks now and it still seems like yesterday to me. I try to stay busy with work, social events and family but there is still a big empty hole that can not be filled in my heart. Trying to forgive myself is a struggle too but I keep trying. I come to this site often reading the words of wisdom, of hope and prayers this helps alot too. Thanks again all. DebbyS

JosephJohn
Posts: 1
Joined: May 2003

Hi Debbie
Just read your message about the guilt you felt after losing your Mom, and I read with tears in my eyes your story and those of the replys sent to you. As a husband and father who recently lost my beloved wife after almost a year of lung and brain cancer I can tell you how much I appreciated my daughter who was there to help me in my caregivers role and so, I know the importance of your role in taking care of your Mom and believe me there should be no room for guilt as I and my daughter lived your life. There were times when my patience ran thin but, thank God, we made it thru each day and that is what counts. My daughter feels the hurt of losing her Mom and best friend and we both agree things will never be the same and they can't be, but, life does go on and treat yourself well, and you'll find time has a way of healing the hurt and sadness. You might also consider joining a Grief and Loss group in your area. Check with the local hospice organization.
Again, let me say, as a Dad, I appreciate the love you shared with your Mother during her illness and I know (I really know) that she is aware of it too.
God love you
A husband and Dad

Holdmyhand
Posts: 4
Joined: Jul 2004

Your mother understood and understands now. She doesn't feel the need to forgive because she knows you. She knows how hard you fought for her and how much you did for her. She doesn't want you to feel guilty. A mother's love is one of the strongest and most elastic things there is. Cry all you want. It's good to get the grief and sorrow out in the open. It will ease up, though, as you heal. Also remember, it wasn't just your mother's presence that made your house a home, it was the love you two shared. Her love will always be with you no matter where you are. Bring some flowers home tomorrow or put a bowl of fruit on the kitchen table. Bake a batch of her favorite cookies or that pie she loved so much. Wrap yourself in her favorite sweater or aphgan while you watch TV or read. Let yourself cry if that is what you feel like but imagine her hand resting on your shoulder or stroking your hair. Pretty soon happy memories will bubble up and you'll surprise yourself with a smile. Remember, mother's can and do forgive anything and everything. We love you no matter what. We understand even the most difficult situations. With luck and patience you'll learn that some day.

diane727
Posts: 3
Joined: Jul 2004

It must have been fate that brought me to this web page and to read your letter. I am 38 years old and lost my mother, my best friend on 4/4/01. I am also an only child with no father. I have been reeling from guilt for the past 3 years. Did I do enough? Did I lose my temper too often? Did I really have to go to work? These questions repeat daily in my mind. You and I and all the other caregivers have to stop banging our heads against the wall. We did the best we could without the training. We are only human. Our mothers knew and still know that we would go to the ends of the earth for them. To take away their pain. My mother had been incoherent the last three days of her life. And as you, I had lived with my mom. She was so full of morphine. The morning she died she had fallen out of bed. I tried so hard to get her back up in the bed but I couldn't. I called EMS. When they got there they got her back in bed but told me I can't call them because she had hospice. Needless to say I was never told anything by hospice of what I could and couldn't do. Finally, hours later a hospice nurse arrived at the house. She then told me that my mom would likely have the most 3 weeks left to live. She ordered my mom a motorized bed. By this time the cancer had spread to her lungs and she couldn't lay down. In the mist of all the confusion with EMS and the nurse. My mother tells me that I shouldn't miss work today I'll lose my job. Those were the last words my mother spoke to me. I called my aunt and told her that she should come to see my mother. She said she would be there tomorrow. My mother finally fell asleep after going a week without sleep. I cleaned the house. The bed came. I kept checking in on mom periodically. Her breathing was very labored. I did not know that these are the signs that death is approaching. I continued to clean. At 6:40 that evening I went in to her and she was gone. WHY DIDN'T ANYBODY TELL ME THAT THESE WOULD BE HER LAST HOURS. WHY DID I SPEND HER LAST FEW HOURS ON EARTH CLEANING THE FRIGGINN HOUSE. All I keep saying is WHY. We have to stop this guilt. It will consume us. I don't know if you believe in an after life. But I keep telling myself that everything happens for a reason. I'm glad I saw your posting because the last couple of weeks have been very bad emotionally. I will pray for you, for you have let me know that I am not alone. And you are not alone. We as caregivers are a family. United in grief, guilt, and hopefully one day peace of mind. You will get over this. In time, you will realize that your mom knows the unconditional love you gave her. She knew it then. If you ever need to talk just write. Take care and GOD bless.

Kodi
Posts: 17
Joined: Jul 2004

I lost my mom 2 yrs ago she was also my best friend, I was always there for her and was feeling guilty also, shortly after she passed i had this dream she was at my work waiting for me and i walked in and seen her i was so excited she looked beautiful not sick no pain and she smiled, but we talked but never moved our lips , mental telepathy, after that dream i felt peace and i knew everything was going to be ok. You never forget, but you adjust life goes on doest stop for nobody doesnt seem fair, since the passing of my mom and my brother in the past 18 months ive grown a little tougher,wiser,and really try not to take things for granted. Try not to feel guity, your mom knew you were there and she knew you would do anything for her.
God Bless Kodi

DebbyS
Posts: 21
Joined: May 2004

Even after 8 months since I lost my mother to cancer I remain dedicated every day to come to this site and read the different stories. I find some comfort coming here.
Its coming the holiday season and I am dreading them. Last 2 years my mother and I celebrated both Thanksgiving and Christmas in her hospital room. Even though she was sick, we celebrated the holidays together, eating the traditional meals together and enjoying just having each other. Seems so long ago. This has been the longest 8 months of my life.
I took a week's vacation in July to my older sister's home in Kansas City, the first vacation I have had since 1995. My Mom wanted to go there this year. As dumb as it sounds, I took mom's picture along with me, while unpacking I placed her picture on the dresser and told my sister I brought Mom along because she wanted so much before she got really sick to come to KC.
I am going back to KC for Thanksgiving. I just can not not face these holidays here.
To all who have sent sweet consoling words to me, I wish you well, safe holidays and may God walk with you.

Love to all,
DebbyS

jess78
Posts: 4
Joined: Nov 2002

I lost my mother 2 1/2 years ago, she was my best friend and I was 23. I will never forget her stroking my hair or her hugs. I'm still angry at the fact that I lost my mother and she will never see me have babies or get married, that I will never get to buy another Mother's Day card. But time has healed some of my wounds, though I have changed and have had to find a new "normal". She has visited me in my dreams and told me she was having a wonderful time and she is ok, which comforts me. I think about her every day and miss her terribly. I could talk to her about anything in the world, and she comforted me as only a mother can. The love between a mother and daughter is so precious, I feel like there's no comparison.

I came to this message board by chance and realize that I am not the only one out there who feels as I do. It is often hard to discuss the feelings you have with people who have never gone through the experience. They would never know what it's like to lose their mother at 23. I would often think, "well, they have their mom, I don't, I am so different from them on how I view the world now." I've learned not to take things for granted and to love much. I've always felt a guilt at not going up to her room the night she died. It was 3am and she was moaning, and I just couldn't go up there because I was so tired and exhausted of it all (my dad and I took care of her). My dad was cleaning behind the fridge, then I heard him go back in the room and I thought he can help her because I just can't go up there. I remember saying I just wanted to go to sleep for once, just to have my brain shut off for a few hours. At 4am I finally did, and at that moment I fell asleep, I felt something go through me and say you can go to sleep now, it's ok. I finally relaxed. My dad says he fell asleep at 4am also, and at 4:20 he woke up, my mom wasn't breathing anymore. She waited for us to fall asleep and then left. I will never forget that experience.

I often wondered, and still do, if she was calling out to me to be there with her. I was angry that I didn't go up to her room, but have finally learned to deal with the fact that she knew I loved her more than anything. I don't think I'll ever forgive myself for not being with her when she died, but I can learn to live with it.

Thank you for letting me say these words I have so long hidden.

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