Moving on is incredibly hard | Caregiver Action Network

Moving on, is incredibly hard

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Brandon
Moving on, is incredibly hard

I wish I had known that forums for us existed back when. My name is Brandon, and I was a family caregiver. In June of 2007, my mother had her second stroke. My dad was working at the time but didn't have his health insurance, so we got screwed. Quickly I became her caregiver, fulltime 24 hours a day 7 days a week 52 weeks a year. For 3 years I did that while my dad worked and made the money. It was hell on me. My mother was a smoker and always wanted to smoke. Every minute she'd ask to smoke. Even if she had a cigarette in her hand, she'd ask to smoke. I am not lying, we timed it. Roughly every 60 seconds she'd ask for a smoke. We limited her to one per hour. She had difficulty falling asleep. Often, it was past midnight before me and my dad were able to fall asleep, well, for him anyway. For me, it would take an hour or two of lying awake in bed to wind down enough to fall asleep. She could never stay still. In the days following her stroke, while in the hospital she was asking to go sit in the chair, when we got her into her chair she would immediately ask to move to the bed. She was like that for the next four years. She has dementia, 2nd stroke, of course. It was unmitigated hell. To make it worse, my father died of a sudden heart attack, December of 2010. At work, keeled over. Doctor ruled his CoD as aetherosclerotic hypertensive cardiovascular disease. So, for the next 5 months I took care of my mother by myself. I was coming apart at the seams just waiting till my dad's life insurance policy came through. My sister told me to apply for food stamps, both in my name and my mother's name. I did not get food stamps, she did. Maybe I should expand. Right now I am a 32 year old white male from a middle class background though I was an unpaid family caregiver. I did not get food stamps... She did. We had 200 bucks when we finally got the EBT card... We were finally able to get my mother into a adult day care and in all honesty they were overworked dealing with her. What did I do? I sat around the house feeling incredibly sorry for myself. I cried, at random. And what have I been doing since? The same thing, sitting around the house and crying. I got a job, its a dead end job that will take me nowhere. It doesn't even pay my rent, I borrow that from my mom. What? I should be homeless? I gave her four years, I deserve a little. I am depressed beyond belief and only now took the first steps to get help. The problem is that help will not be good enough. I looked around when my dad died, asking for help from a variety of government and non-government actors. They all turned me and us down. When my mother was finally in a nursing home, I tried again to do the same thing and again, no one has helped... But now, people say I could have gotten help. There was a program called Choices that was a Medicare Waiver that could have gotten my mother in a nursing home and could have given me something. No one told me about that. But they won't give me back benefits. I threw away 4 years of my life dealing with my mom, it has caused all sorts of mental health issues for me. I. Am. Suicidal. I am not planning it. But I know, one push is all I need and that push is coming. I have looked and have gotten zero assistance from any government agency or private charity to help me get back on track, to have a life. Someone give me something! A number I can call. Some government agency that will listen to my story and help and not give me the fucking runaround. Cause I am this close.

Mardi
Conflicted

When Mom was alive, she was mean.  She alienated everyone.  I was the only one left to take care of her. Now she's gone and I don't know what to feel. 

Almost 20 years ago Mom started driving people away.  With hindsight I realize that it was undetected dementia.  I feel sorry for her because during all that time, she didn't understand why people had left her.  She could be so amazingly charming! And then she'd whip out terribly cruel zingers.

I know that Mom and I were the best of friends at one time.  The last several years taught me to be on guard around her amd unfortunately, that's all I remember.  I've lost the happy memories.

Relatives who live elsewhere accused me choosing to let Mom die in the end, instead of choosing extreme measures to save her. They said I was tired of taking care of her. Things got very tense.  They later apologized and intellectually I accept the sincerity of their apology. But I'm having trouble letting go of the hurt.

Mom's memorial is this weekend.  I feel that these same people will judge me if I don't cry.  But my emotions are so messed up that I cry over nothing and don't cry when it matters.

I appreciate any comments, but perhaps the most value I'll get from this post is simply being able to vent. It does feel good.  Thank you to whomever has made this forum possible.

M