You Are Worthy of Dignity Love and Respect

You Are Worthy of Dignity, Love, and Respect

June 29, 2020

Irving started taking care of his family and managing the household as a teenager. As his parents developed medical health problems, his responsibilities grew to include their full-time care. Irvine tells us about the challenges of centering his life around caregiving, the importance of brief escapes, and reminding yourself that you're doing the best that you can. This is Irving's story.

As told to Open Caregiving and lightly edited to enhance readability while preserving the author’s voice.

Getting to know the caregiver

Hi, my name is Irving. I’m a millennial man from Washington. I am currently a caregiver for my parents.

What did your life look like when you became a caregiver?

I will answer this on multiple levels, if you don’t mind. I think I mostly became a caregiver when I was about fourteen. My parents both worked full time, not that unusual a background, so I ended up taking care of the rest of the family. That meant learning how to cook, clean, and manage finances.

I didn’t think much of it at the time. The future would come and I’d be able to step out on my own! It ended up setting the seeds for becoming a permanent caretaker. Because I was reliable, I was relied on. Most caretakers I’ve known don’t choose the role; they’re forced into it, and by the time they realize their life is over, that’s it. At least, that’s how it is with me.

I became a full-time caregiver about six, maybe eight years back. That was when my parents’ combined medical issues got out of hand. Although my time isn’t consumed as much as some others, it became something that I needed to be prepared to engage with every waking day.

Who did you care for and what prompted their need for care?

Personally, I loved both my parents. I don’t think I can say that anymore, even though there’s so much I still love about them.

They’re both incredible, giving people. As individuals, there are lots of personal things that make them wonderful. Unfortunately, full-time care is like a tiny mental cancer. There are people out there who can manage long-term caring without growing to hate the people they care for, and they are incredible. If you, reading this, are one of those people, you are incredible. I’m proud of you and glad that you exist.

Unfortunately, for me, the more time I spend in proximity with people, the less I like them. It’s how I’ve always been. I was really hoping it’d be different with family, but no such luck. I don’t want to feel this way, but that’s just how it is. I could act on it and be an awful person, or keep on keeping on and do the right thing regardless of how I feel. In the end, I can take some pride in that, I think.

Some caregivers I have known resent the weakness or need for aid of the people they take care of; that isn’t my case. It’s just the constant exposure to the lives of others, and the lack of my own life. I do not blame them for it or resent them for existing. It’s just that I need a good long time to recharge my batteries and I never get it.

What was a memorable learning?

Unless you control every factor, the people you care for will mess up. Even if they’re fully cogent and mentally aware. You can choose to feel awful, or worry that you’re controlling, but that’s better than having a dangerous situation. You want to prevent injury or harm.

Learn their habits! Being aware of who they are, what they like to do, their common mistakes and issues, that’s all as important as knowing their medication lists and physical needs.

What surprised you about caregiving?

How much time it consumes. You won’t have time for anything else. You will feel in danger of missing something when you stop to check your email, when you take a moment to catch your breath, when you put the tea on, when you’re daring to contemplate sleep.

You do not have time for education. You do not have time for personal concerns. You do not matter, and no one, especially not the people who pretend to care, cares.

When you’ve accepted these facts, you can set about reclaiming time for yourself. It isn’t happy, but it will make every five seconds you grab feel like a victory and will allow you to survive.

How do you try to balance being a caregiver while caring for yourself?

Despite how bitter my answers might sound, they are not. You must not give into bitterness, but I think you have to acknowledge it, understand it, and find ways to move on.

You must try to find some small thing that can be yours. Even if it can only be done inwardly, or if other people would consider it unimportant. For me, it’s my garden. I love plants. They don’t ask for anything; they require nothing, they simply are.

Also, keep in shape! Although it might feel like there’s no time, it’s well worth it. The endorphins from exercising are great and being able to trust your body for the task is incredibly important.

What resource would you recommend to caregivers?

I think local and state Area Agency on Aging and caregiving associations are an incredible and underutilized resource. Please don’t make my mistake and overlook them! The education and assistance might be a huge help. You might even benefit from both.

Also, a good collection of recipes. Not a cookbook, but tried-and-true recipes with good nutrition that picky eaters will enjoy. Write ’em down on cards, even if (especially if!) you know them by heart. Who knows, you might be lucky enough to have assistance or friends who can step in for a moment. It might help them shave time off and they’ll appreciate it. Plus, writing down recipes is fun.

What advice would you give to caregivers?

If you must be a caregiver, keep your head up. Know that even if it doesn’t seem appreciated, you’ve done the right thing. Try to remember that, no matter how hard it gets. It gets easier the more time goes on.

There are a million lessons I think caregivers can learn and maybe teach one another. The first, and it’s so simple, is to always be kind and courteous where possible.

I think you can see from my answers I do not feel that way, but I always try to be in the waking world and it helps people tremendously. They take energy from that, and though they give nothing in return, it still makes dealing with them easier, and costs me nothing. Being cruel is one of those things I think only appeals to awful people.

Remind yourself that you are important; you are worthy of dignity and love and respect. Every day, when you wake up, look at the mirror and praise yourself. Praise the things you like; the things you don’t like. Your body, your mind, your sense of style. Every morning. Maybe every night, too. It’ll help your confidence, and you deserve it.

Is there anything else you’d like to share?

If you are not a full-time caregiver, find plenty of time to recharge your batteries! Don’t let full-time caregivers tell you it is somehow less. Taking care of people is hard, no matter the time it steals!

Managing to get away, or even dream about something else, is important. If you can pursue education or training in your spare time, as a full-time or part-time caregiver, go for it! Go for it and never look back!

Find things you can love about the people you care for. Being able to appreciate their jokes (even if you hear the same ones, day after day), share a genuine smile over a moment of peace, or encourage them in their hobbies and interests. All of those will help you, as well. They will remind you of your humanity and theirs. So long as you can cherish them, you can take great strength from them.

Finally, no matter what happens, remember to not blame yourself. There will be a time when you aren’t fast enough, aren’t observant enough, aren’t there. When there are too many fires to put out, or they just aren’t cooperating, or when there’s nothing you can do.

You were here. You did good. Your actions mattered.

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