Freedom, eh?


I have been mulling over what to share and how to share of my journey.
What is too much?
Am I helping anyone?
Do people see me as attention-seeking putting all of this out into the world?
Does it even matter what people think or if anyone even reads this blog?
I am not sure of any of these answers. And, frankly I am not going to worry about it right now, or ever again. I am not going to worry about what or how I share. This is my experience and my way of processing it. The internet is still a free world so you can read or you can click on something else if you choose.
I have realized that I would be doing good for someone.
Since joining the Parkinson’s caregiver and elderly parent caregiver support groups on Facebook I have come to see a whole new world that I never knew about. The caregivers are a lot like the patients, invisible in society. They are stuck inside and sometimes even hiding in their homes. A lot of times there is no choice. There is a lack of support and resources for caregiving. I now know this first hand.
Sometimes, it’s so lonely and depressing you don’t even want to engage another human being. Sometimes you feel guilty for leaving your loved one confined to their bed. It’s a whole range of complicated human emotions.
This whole caregiver thing is SO complicated for modern humans. Back in the day, elders were respected, revered. The prescribed way of living and dying, with family, was clear. Times have changed and everyone values their independence. Forget about family,… “What about MY LIFE?!” I am not going to lie, I felt that. It is so ingrained in our culture in America. Independence. Freedom. It’s not my problem.
And here we are. Here I am.
I have been reading the book Being Mortal by Atul Gawande and he states, “The amount of freedom you have in your life is not the measure of the worth of your life.”
I’m going to leave it there for now.

Go ahead and mull over that for yourself, I have.

Solitary Confinement

Solitary confinement is a form of imprisonment distinguished by living in single cells with little or no meaningful contact to other inmates, strict measures to control contraband, and the use of additional security measures and equipment. ”

I feel like I am in some kind of prison.

Summer is just starting. As a season I, and most people view as a time of vacations, laissez faire plans and freedom. It is a time of the year to relax, travel and take off on the open roads.

And I am stuck. And so are millions of other caregivers.

I am having a very hard time with this concept. I am the girl who constantly ran away from home because I wanted my freedom. This is some kind of karma, isn’t it?

I am driving myself insane with thoughts of how my value of freedom is being compromised, how I can’t just do what I want when I want, and how my future and plans are put on hold.

I’m tired of people saying how I’ll never regret this time with my dad. What if I do end up regretting it? What if I do end up missing out on my life? I was just in the middle of running our bar and building up my retreat business that I had big dreams for.

And not only am I in this prison for my future plans, I put myself in some weird ass current prison state of mind. Being in the house most of the day, I don’t even want to go out and see other people. Sadly, I must admit, I go a couple days without a shower sometimes. What’s the point?

I am sharing this for a couple of reasons, too many caregivers are feeling the same way and the lack of support all the way around is an elder care crisis. I recently joined a couple caregiver groups on Facebook and I was shocked to see how many people are suffering like I am and a lot worse. There are mothers taking care of their mothers and school age children while also trying to hold onto a job. There are elder spouses caring for elder spouses. There are only children living in remote areas without access to resources like big cities. Before this experience, I didn’t know the severity of this aging epidemic.

Some of the most heartbreaking stories are similar to mine. People who have had to work their whole lives, like my dad, are not fully supported by their social security or medicare. We can’t get a paid caregiver to relieve me unless we pay out of pocket or we are dirt poor. I also learned the federal poverty level is $20,780 for a family of 3 and my dad doesn’t qualify. He gets slightly over that, hardly enough to support our household and pay out of pocket for a caregiver at $25-$40 per hour. Although, I’m not sure if I can find a part time job that pays $60 an hour. Oh, maybe I can find a job that would just let me work in 2-3 hour increments. People are forced to spend down their hard earned savings and also sign over their houses for home care or nursing care. And don’t get me started on the shit wages paid to caregivers, most times they don’t even get that $25.

It’s a double edged sword.

It’s a dirty trap.

It’s despicable.

It’s making me crazy. And this week it had me at my breaking point.

Every care giving piece of advice out there says, “don’t forget self care and to take some time for yourself.” I ask, how are caregivers supposed to do that? There is plenty of advice on that too. We can make a schedule with other family members. We can ask friends and neighbors. We can join support groups. Here is a nice little handout from the Mayo Clinic. All lovely practical advice in a perfect world.

Friends, I didn’t know I would go down this path of caregiver stress and depression. It is a slippery slope. You think you are doing fine juggling all the balls, staying positive and keeping a smile on your face and then boom one day you realize you aren’t yourself. And you are exhausted and at the same time can’t sleep. And you the helper needs some help.

From this latest episode in my care giving journey I learned I need to keep asking for help and be open to receiving it. We aren’t supposed to do this alone. We can’t do this alone. Solitary confinement is no place for anyone.