When it comes to chronic illness, the patient is usually the main focus. Caregivers can often be lost in the shuffle. Pact blog writer Jim focuses on our caregivers, and the difficulties in accepting changes that come with illness.


About fifteen years ago change entered my life that I wasn’t prepared for. My wife got sick. It wasn’t overnight but gradual. Still, a point came when I could no longer avoid change. It affected everything – my daily plans, aspirations, expectations – in ways I did not invite or welcome. But that was fifteen years ago. I see things differently now.

THE UNEXPECTED CHANGE

I was at work one morning, having an average start to my day, then I saw some people gathered by a window. I joined them. We saw smoke coming from one of the twin towers of the World Trade Center. We watched. We all watched. Americans changed that day.

When bad stuff happens it changes us. Maybe permanently. When that change is chronic illness or death, destruction or separation it is normal to feel a sense of loss, of grief, for that which was. In 2011, the timeline of my life suddenly had a ‘before and after’ mark. When my wife got sick, same thing. I had no power to prevent those changes. But we all have the power to decide how we will respond to them.

FACING REALITY

“We must accept finite disappointment, but never lose infinite hope.” – Martin Luther King, Jr.

When unwanted change comes, it is natural to resist it. At some point though we move past denial and confront the new reality. Your life and your loved one who has been diagnosed with chronic illness is not going to be the same as before. Neither are you. You’re not expected to like it, but growth only happens once you accept it.

LOOKING FORWARD

“Don’t dwell on what went wrong. Instead, focus on what to do next.” – Dennis Waitley

If you’re in a car on a one-way road, once you pass something there’s no going back. Missing it, mourning it, feeling bad about it won’t change that. And while you mourn you’re not watching the road. You may miss new wonders because you weren’t looking.

A good investment of your energy, both for you and your loved one, is to live in the moment and plan for the future. Start small. Build up your ‘moving forward’ muscles. See everything you accomplish as a win. Eventually you’ll build up speed and life will start feeling back on track.

DON’T FORGET ABOUT YOURSELF

Caregivers, give. Every day you give time, attention and energy to care for the people in your life. But if you give all you have and save none for yourself, you will suffer for it. If it helps to think of it this way, remember that if you fall apart, who is going to care for your loved one?

  • Manage your stress with play time, you time, meditation, or just a nap. Something just for you.
  • Delegate some of your care responsibilities to others and take some time off.
  • Take advantage of home care opportunities. They can be expensive, but find out if insurance will cover it.
  • Spending time with friends is good for you. They appreciate it too. Win win!
  • Keep yourself healthy. Eat healthy, exercise, get enough sleep.
  • Find a way to express your many feelings. Keep a private diary, one where you can express honestly. Feel free to destroy it as you go, just get it out of you and onto paper.
  • Consider seeing a mental health professional. There is no shame in seeking help adjusting to change. Confronting life altering change is a lot like post-traumatic stress disorder. Get help.

YOU ARE NOT ALONE

I guarantee you that whatever chronic illness you are facing, there are others who are going though it too. Tap into the resources that are available. If you don’t know how to do that:

  • Ask the doctor or nurse who is caring for your loved one. They may have a resource to share.
  • Do an internet search for such-and-such “support group”.
  • Inquire at your local house of faith. A lot of support groups organize through spiritual hubs.
  • Talk to your friends. You may be surprised to find that once you break into the subject of support and caregiving that your friends have been through something similar and just never brought it up.

EMPOWER YOURSELF

After my wife got sick I felt pretty helpless. I gave love and understanding and compassion but that didn’t feel like enough. I felt much more helpful once I understood her condition better.

  • Research your loved one’s condition. Get info from the NIH or a reputable medical institution like Mayo Clinic. There are great summaries of the who, what, where and why.
  • Support groups often have guides for what to expect and tips for caregivers
  • Start taking back control of your reality. Anything you can do to plan, start, then finish something is empowering. As you regain control you become a better living example.

 

Caregivers, you didn’t ask for this, yet, this is your reality now. Once you accept it, take back some control and move forward with your life, you will feel better. Taking care of yourself is part of being a good caregiver.