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Caring for the Closest Ones

Caring for the Closest Ones

Caregiving is an unfortunate necessity in our society in the United States. We have moved away from collective living and our assisted living/nursing home system is outrageously expensive. We are living longer and developing more chronic illnesses. You must be incredibly wealthy or incredibly poor to afford these places (Medicaid picks up the bill if you're on the lower end of income!). For the rest of us, which is, I think, most of us, we are forced to make difficult decisions. Spend down all of your life savings and earned wages and then qualify for Medicaid, or provide unpaid care in the home. 

My dad and I had many difficult conversations about this. He didn't want me to have to move home at 24, as I had just gotten into graduate school and was living with friends. I didn't really want to move home, because let's face it, I didn't want my mom to be sick or to deal with the fallout of that fact. However, no matter which way we thought about it, my mom wasn't really fit for assisted living yet, and we couldn't afford it. I chose to move home and help my dad figure it all out, while simultaneously providing care for her. 

At 24, this is not really something I could relate to my peers on. I got varied responses.

"I wouldn't do that for my parents."

"You're so responsible."

"You should go to grad school instead."

"You are doing the right thing."

"You're an example to all of us." 

Everyone seemed to have an opinion, and from my perspective I did it because it was the only option. I didn't feel responsible, or like an example to others. I felt tired, stressed, confused, unsure, and above all, I felt like I shouldn't have to be the one doing this. Why wasn't there any help out there? Why me? 

I had many moments like this throughout my mom's illness and even now, many months after she died. I couldn't have gotten through my experience feeling this way the whole time. So what got me through it?

My mom laughing when we played her Josh Groban (her favorite album) a year after we thought she stopped laughing. 

Her pushing my hair behind my ear and adjusting my sleeves when she couldn't walk or speak and was bedbound. 

The way she looked at me when she first had an incontinence accident, followed by tears.

Sitting with her for a few hours while she blankly stared, then finally getting eye contact and a smile. 

Being able to hold her hand when she died. 

Seeing her smile at her old friends who came to visit. 

The love she shared with me through her illness, and the great depths of love I shared back that I didn't know were there. 

Crisis and caring bring out the most raw of emotions. There were many more meaningful moments of love than there were frightening moments of chaos. Love, anger, frustration, hope. They're all there. Taking on this challenge made me question everything about myself and what I was capable of doing. I grew in so many ways, and learned so much about myself and my family. This doesn't mean I think we should accept our system the way it is. We need more options for caregivers and for the ill. We need help and support. I just mean to say it was an experience I do not regret. I am glad I made the choice to care for one of my closest ones at home. 

 

 

Celebrating the Holidays

Celebrating the Holidays

How do you die from dementia?

How do you die from dementia?