Episode 103: Caregiver Manifesto

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Caregiver,

I see you…

You’re tired, lonely, and afraid. 

You’re not sure when your life took the nose dive that it did. Don’t really know when you lost yourself. 

You don’t like your life and have no idea how to live it differently. 

Caregiving is all you do now. It’s what you eat, drink and sleep (if you get to sleep).

Most times you collapse into bed at night overwhelmed with the anger, resentment, fear and loneliness you feel as a caregiver and can easily fall into the spiral of doubt, guilt and regret that the quiet of the night can bring with a force that’s hard to control. 

You want more. 

You flip flop between worrying about the person you care for and hating them for changing your life this way. 

You want to be done with caregiving but you also don’t want them out of your life. 

How can you give up so much of your life to care for someone? 

The loneliness can feel overwhelming and suffocating. You feel claustrophobic in your own home. You see that door but don’t know how you could possibly step out of it for even a minute without something happening to the person you left inside. 

You wish for a break but you’re so far deep into the feeling of isolation that can come with caregiving that you don’t even know what you would do if you finally got one. You feel like your family and friends have abandoned you. They’ve gone on to live their lives and left you behind. No one to help. No one to talk to. No one who will even try to understand what you’re going through.

Invisible…

The level of resentment you feel when people ask about the person you care for is shocking. The guilt you feel when you realize all you want is for them to ask you if you’re ok ruins the rest of your day…week…life.

Every time you think of escaping, taking a break, just stepping out of the house so you can breathe, you judge yourself.

I’m not the one that’s sick. My life isn’t being defined by months or weeks that I have left. I am not succumbing to the rapid decline of old age that is stealing my loved one away from me.

I have no reason to want anything other than what I have.

So you trudge along…

You accept that you will be miserable forever. A life sentence only as long as their life will be.

No one is around to notice that you need care just as much as the person you are caring for. 

Then there is that cry for help that no one pays attention to. They hear it but don’t respond with anything more than a simple “you need to take care of yourself.” 

The words that crush your soul. The attitude that tells you that you’re on your own with this. The socially acceptable way to tell you “we don’t really care.” 

You take that as a cue. Don’t allow yourself to be vulnerable again. Asking for help only makes things worse. People will judge me if I tell them how I feel and what I need. 

Don’t 

Ask

For

Help!

After a while that loneliness turns into resentment and anger. Why the hell did this have to happen to you? 

Your life was supposed to be so great! 

You and your husband were supposed to travel all over the world, enjoy life together, and have children.

Your parents were supposed to always be there to take care of you and now they don’t even notice you as their child. 

Why can’t anyone see how unfair this is for you? 

Then for a second you imagine that alternative life you thought you’d live and wonder what if…

I ran away? Because escape is the only way you see out of this.

But you stay and beat yourself up for even thinking about it. 

You stay because…

You have to

No one else will show up

You don’t see a way out

You still love them

So you accept your fate and push through. 

Happiness isn’t meant for people like you. 

You’re not the one that is sick, you have nothing to complain about.

All you want is for someone to come up and give you a hug. Let you cry it all out without trying to fix anything. 

All you want is for someone to see you… REALLY see you and realize who you were has been lost and a search party has to be sent out to find you again!

All you want is to be able to enjoy living with the person you care for instead of dreading life with them each day you wake up.

All you want is for someone to show up and say… you need help and I’m going to help you, instead of saying you need help you should really do something about that. 

All you want is for that person you care for, the one you gave up your life for,  to look at you through the eyes they used to see you with. 

All you want is:

…to not feel alone.

…to feel like you can take a long bath without the guilt.

…to finally sleep through the night.

…to live without the oppressive weight of worry.

A long time ago you might have had the energy to figure out how to enjoy your life but now you say “What’s the point anymore?”

The point is …

You deserve more.

The people around you should be ashamed that they haven’t been more supportive of you and your needs. 

You need more.

If you aren’t attending to your own needs you aren’t really being the caregiver you set out to be.

You have to have more.

You deserve more!

Don’t give up on your life! It is possible to learn how to enjoy it again.

You can set out the search party to find the you that you lost when you became a caregiver. 

You should be able to

Take breaks,

Leave the house

Sit in that long bath without worry or guilt. 

You should be able to show the world the superhero you really are.

You have to want it because all you have the power to change is what you do. You’ll have to choose you over fear of judgment and lack of support. 

You see the mountain you’ll have to climb and you sit back down and say

That’s ok, I can’t do this alone. 

I don’t have the right gear. 

I don’t have the stamina to make it all the way up and I can’t survive another failure.

I don’t have the time. 

I’m not enough to fight for. 

I hear you and have to let you in on a little secret…

People don’t climb mountains on their own.

They have someone who… 

Helps them find the right path.

Teaches them what they need to know to get there.

Make sure they have everything they need to successfully make it to the top.

And goes on the journey with them if they need the support, companionship and a little push along the way,

You see the problem isn’t that you aren’t supposed to enjoy your life when you become a caregiver. The problem is you can’t see yourself as a caregiver enjoying life. You don’t have the roadmap, the person who will make sure you have everything you need to be successful and who will be there to support you on your way to finding the life you really deserve to live. 

I know how scary it can be to want more. I also know that being a caregiver does not mean life for you is over. 

You have the strength to care for someone, advocate for them, demand the things they need to live. 

I know you have the strength to do the same for yourself.

Let’s begin this journey together.