Managing the Emotional Stress of Caregiving

emotional-stress-caregivingIf you have ever attended one of my presentations, or if you have followed my blog, you know I frequently talk about developing an “Attitude of Creative Indifference” toward the emotional stress of caregiving.

The three steps are:

Become AWARE of the specific issues that cause you the greatest amount of emotional stress.

ACCEPT: You are human and you are coping with situations that are complicated and extremely difficult to manage.

ACT! Take care of the things you can change. Release the things over which you have no power, influence, or control.

Right now I am somewhere between Step One and Step Two. Recently my husband and I went on a little trip to Bend, Oregon with my three kids and their families. We have visited Central Oregon numerous times because we love hiking, and the trails along the Deschutes River are beyond gorgeous. I had been looking forward to this trip for months. I was anticipating that Alex and I would hike every day, but it didn’t work out that way.

Alex had back surgery last August. By January he was out of pain and starting to regain his energy. By March we had resumed our daily 3-mile walks. We were even doing a little yard work together. We thought we’d gotten our life back. Then in April, he started experiencing hip and knee pain. For the past month the intensity of his pain has been steadily increasing, and his energy and mobility have been steadily decreasing. We are once again on the circuit of trips to doctor’s offices, X-rays, and pain management therapy.

So here’s my first step:

I am AWARE that I am feeling scared and sad. I’m scared that physical therapy might not be a solution, and that he might be facing a third spinal fusion. At the same time, I’m frightened that there may NOT be a surgical solution, which means his pain could continue to get worse and it could once again take control over our lives.

I’m sad because I thought we’d been given a reprieve. I believed this last surgery had rewound the clock and given us back the freedom and flexibility to do the things we love – like hiking and traveling.

I often talk about Preparatory Grief – the process caregivers go through when they are constantly having to adjust to ongoing losses and changes when someone they love has a long-term progressive and degenerative disease. Grief is what I’m feeling today. I’m grieving the loss of his ability to engage in the activities we used to enjoy, and I’m grieving the loss of what we had hoped we’d be able to do in the next five years.

Intellectually, I know we are a luckier than a lot of people at our age and stage in life. We aren’t dealing with cancer, Alzheimer’s, or Parkinson’s Disease. For that I am beyond grateful. Even so, my heart is heavy, and as hard as I’m trying to feel lucky, I’m having a hard time getting there.

I know once we get the results back from this newest round of X-rays and the doctors devise a treatment plan, that I will move on to ACCEPTANCE, which is the second step of developing an “Attitude of Creative Indifference”. I will get there. I know I will also get to Step 3, and I’ll take whatever ACTION is required to take care of Alex through whatever processes and procedures lay ahead.

But for today, I’m practicing what I preach. I’m acknowledging my feelings of loss, sadness, and fear. I’m wallowing a bit. I feel sorry for him, and to be perfectly honest, I’m feeling sorry for myself, as well.

Being aware of our feelings, naming them, and allowing ourselves to experience and express them won’t cure diseases or make our problems go away, but I believe it can help give us the perspective we need to cope with the emotional stress of caregiving when someone we love is living with a disease or disability that impacts the quality of their life and ours.