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Double Grief


Orion

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Hello,

I am new to this forum. I wanted to post because my father died about 3 weeks ago. However, due to his debilitating disease, a form of Parkinsonism known as PSP/CBD, I have been greiving his "death" for about 4 years. By the last year, my father could not communicate, vocalize, eat without choking, or use his limbs. He'd been wheelchair bound for 4 years.

I am writing because, for the first time in my life, I can't understand the feelings I have. I am angry in a way that hurts from the inside of my body out to the air around me- if you can try to understand me. I am melancholy yet not on pins and needles like I was in his last 4 years. I am utterly exhausted all the time and hungry all the time. Yet, I wouldn't say depressed in the clinical sense. All I know is that I don't even care what you call it, I just don't want to do anything stupid like tell a loved one off, or miss too many days of work and lose my job, etc etc. I want to deal with this complex set of new feelings in a positive way, not in a way that ruins my life. It was already ruined when my father got his diagnosis and then was murdered by this awful disease. I want to move on...

What makes this even harder is that my father was the center of my entire world. He was all I had in the universe, and now I have absolutely nothing. I am starting totally from scratch at 38.

I would sppreciate anyone's thoughts during this tough time.

Orion

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Orion, I lost my mom 2 months ago. She was 87 and she had parkinsons for years. She got that Deep Brain stimulator put in and it made her worse anyway long story short. She died at 87. She was in a wheelchair for about a year. She got very thin and i had to feed her in bed, etc. so i know exactly what your talking about.

I am very proud to know that you kept working. My mom was my whole world also. I took her out to Calif with me her last year and had to lift her in and out of the wheelchair along that long journey but i did it. At the end a nursing home in NJ said she should stay in there,, she eventually passed away. They thought they knew it all and they didn't. I kept her alive with 4 plus feedings a day and changed her diaper it was hard work but i loved her. She was a strong, smart kind woman from scotland and i miss her every day. The first 6 weeks were awful. I am getting better and not crying as much but still cry.

I know how you feel and its very hard. You will get better with time but it is a sad situation and one is really never the same.

I will pray for you for healing, peace, contentment and strength during this difficult time.

Debbie

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Being a caregiver such as you were is not only physically demanding, but mentally also. I struggled with my mom for 5 years, watching her deteriorate little by little from pulmonary hypertension and eventually lung cancer.

It's been almost 2 months now that she died and I am just now slowly getting to the point where I can sleep somewhat normally, although I still wake up in the middle of the night and listen to see if my mom needs me. It's a habit that's been hard to break.

For me my anger stemmed from a sense of abandonment and also a sense of guilt that I thought I did not do more for my mom. At least that's how I felt initially - that I had somehow neglected her and could have done more. In reality, there wasn't anything more I could have done.

Don't beat yourself up Orion. You need to some time to process the grief and try to get back to a somewhat normal schedule. Talk to friends or others here on the forum. We understand what you are going through. If you need to cry - do it. Crying is good for you - it will help you drain some of those bad feelings you have.

God bless you...we will pray for you.

Frank

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Hi Orion, I'm so sorry you are facing these difficult times. I lost my daughter in July and it has been hard on me too. My daughter's death has affected me in a way that I never had any understanding about. Over the years I have lost several people who were very close to me. All those experiences were different. Each time the grief I felt was different. When my dad died several years back I felt a little guilty because I didn't even grieve for him. He had never been there for me so I couldn't feel grief when he died. My uncle died and even though he and I had been very close in the past, I just accepted it as another fact of life. I really didn't grieve for him either. Possibly the first time I had the experience of true grief was when my brother died. He had battled cancer for a long time, and it was so heart breaking to see him being brought to a place he didn't want to go. He didn't want to die, but he died well. It really hurt me to see him suffer that way, but I stayed strong and tried to comfort the rest of the family. When I thought about his death I had to accept that he wasn't hurting anymore. He doesn't hurt anymore. For me that was a comfort. My mom was so broken over his death, and she was lashing out at everyone. I tried to comfort her and she went off on me saying things that just crushed me. The problem was that I knew those things came from her heart. She would have never said things like that if she were in her right mind, but her grieving over my brother allowed her to say what she was thinking. I was grieving over my brother's death too, and my grief was greatly magnified over my mother screaming at me, calling me a stupid stupid idiot. Grief like I had never known became a part of my everyday life, and I felt like a broken horse. I know my mother loves me, but her words cut deep at that time. Grief hurts and can be different with every loss. Over the years I have experienced grief more times than I want to think about. When my brother died his death was easier on me because I was happy for him. He had suffered terrible, and finally he was free from pain. Please don't beat yourself up because you aren't grieving in some cookie cuter way. If I were in your place I think I would be relieved, because nothing could ever hurt my father again. When we watch them suffer long enough it is natural to wish for their suffering to end. You have nothing to feel guilty about. I'm not sure what your different emotions are, but I do know you shouldn't feel guilty for having them. My daughter's death nearly killed me. Grieving for her still goes on, but I will tell you the truth, if she had to come back and suffer the way she had in the past few years, I wouldn't want her to come back. Nothing will ever hurt her again, and that is a comfort for me. I I want you to know, 'm so sorry for your loss and I understand your pain.

Hello,

I am new to this forum. I wanted to post because my father died about 3 weeks ago. However, due to his debilitating disease, a form of Parkinsonism known as PSP/CBD, I have been greiving his "death" for about 4 years. By the last year, my father could not communicate, vocalize, eat without choking, or use his limbs. He'd been wheelchair bound for 4 years.

I am writing because, for the first time in my life, I can't understand the feelings I have. I am angry in a way that hurts from the inside of my body out to the air around me- if you can try to understand me. I am melancholy yet not on pins and needles like I was in his last 4 years. I am utterly exhausted all the time and hungry all the time. Yet, I wouldn't say depressed in the clinical sense. All I know is that I don't even care what you call it, I just don't want to do anything stupid like tell a loved one off, or miss too many days of work and lose my job, etc etc. I want to deal with this complex set of new feelings in a positive way, not in a way that ruins my life. It was already ruined when my father got his diagnosis and then was murdered by this awful disease. I want to move on...

What makes this even harder is that my father was the center of my entire world. He was all I had in the universe, and now I have absolutely nothing. I am starting totally from scratch at 38.

I would sppreciate anyone's thoughts during this tough time.

Orion

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