Where I come from

A little background on me: my mother has bipolar disorder and raised me. She was a single parent and I am her only child. We lived in assisted housing for the mentally ill. We were poor, and well lets just say it was an interesting and unique childhood. 🙂 She was and is a good mom- the best she could be. We struggled with some things, and got a ton of help with other things that we couldn’t do on our own. They say it takes a village to raise a child: well, it took a church and all of the Village of Amityville, and the rest of Long Island to raise me. I was a force to reckon with at times.

If having a disability wasn’t enough, my mom was diagnosed with late stage ovarian cancer. I was in my early teens, maybe 13 or so. We went through that together. Our church provided a ton of support through that time.

A few years later, Mom was in a very serious car accident. She was hit walking across the street in a crosswalk. It left her unable to walk for a while and left some permanent damage on her brain. She suffered from hematoma and the result was scar tissue. This all impacted her memory permanently- thankfully today it’s not too bad.  I struggled to find resources and help and at times I went mad.  I couldn’t do it on my own. Through our cries of help, we reached out to her case manager at a local organization for the mentally ill and to my church.  With help, we got through it. I wish I could have handled things better but it was a learning experience. Maybe with some tips, you can, if you’re ever in my shoes.

There are times today she can’t afford things and struggles. I try to help out in the ways I can, when I can. She always says that family is there when no one else is. I agree but I believe that we cannot just rely on family. We have to network and help each other, whether we’re neighbors, friends or co-workers. We should all make an effort to reach out to one another when we see someone in need. Also, these experiences have taught me the importance of  boundaries. There are limits to what we can and should do for another person, even if it’s a family member. This is a point I’ll touch on in another entry.

My father is another story. He has been an on and off alcoholic for most of my life. To his credit, he tries to quit at times but an addiction is an addiction and it’s really hard to overcome it. He has been unable to forgive himself for his mistakes for a long time now and often that subconsciously causes him to make the decisions he makes. Thankfully, I see right through him, although that doesn’t mean his choices don’t hurt me and haven’t hurt our family. He was recently diagnosed with COPD due to alpha 1 antitrypsin disorder, for which I am a carrier. This resulted in ongoing treatment, surgery on a kidney and a rapidly decreasing condition. Beginning in January he started to suffer from a series of strokes. He’s gone downhill. He was taken to the hospital last week (for the fourth time in three months) and was transferred to a great rehabilitation facility last night. Woo hoo!

Now that I’ve shared my immediate familial history, I can start to explain how I got things done, who and what  I relied on for help (because we cannot be caregivers on our own) and the practical things I’ve learned through all of these experiences.

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On the phone with dad

Dad just called me. He was transferred to a rehabilitation facility yesterday. It’s supposed to be one of the best on Long Island. Apparently he likes the food. 😉

I’m taking a break from our conversation to write this entry because he dropped the phone and is struggling to pick it up. He’s done this three times in the last ten minutes. So I wait… Op! Is the phone almost to his head?! No, now he’s talking with someone. I can hear their muffled conversation. I guess he gave up on me. Ha. I’ll talk to him later. This is the second time I’ve spoken with him today.

Oh wait! He picked up- I’ve got go.

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What’s this blog all about?

I want to dedicate this blog to the 20 some-odd year olds who are taking care of their parents. Yes, that’s right. There are children, teens and twenty some-odd year olds that have to take care of their parents. Maybe they have a single parent who is disabled. Maybe he or she has a parent who recently fell victim to a stroke, or grew up with a parent with multiple sclerosis. That kid might have grown up as a caregiver and not know a life as anything else. Conversely, maybe that twenty some-odd year old found out yesterday that her mother won’t walk or talk again and is struggling to find the resources to help her mother and provide for herself.

Maybe somewhere there’s a young person struggling to take care of a parent or parents from afar while working or trying to work full time. Maybe they pay bills for their parents AND pay their own bills. Maybe they’re trying to pay back student loans. My entries are for that individual. For you. This series of entries is for me. We are one in the same.

My hope is that my education in health policy, and my work experience in the field together with my personal experiences can somehow culminate in a tangible way to help individuals in difficult situations understand the system in which they live, where the answers to day to day problems may lie, and what they can do to help themselves and their family members for the longer term. On the same token, as a policy professional, I hope that my colleagues will also read my entries and find them meaningful. Together, we must work toward creating better solutions for the individuals that need them.

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