Eight Tips for Caregivers in the “New Normal” Stage after Brain Injury

Brain Injury Blog 

Eight Tips for Caregivers in the “New Normal” Stage

by Janet M. Cromer, RN, MA, LMHC

Family caregivers move through several seasons or stages as their loved one progresses through treatment in the intensive care unit, to inpatient rehabilitation, and finally back home. But we know that’s only a new beginning- not a finish line. Each stage comes with its own emotional responses and tasks to master. Fortunately, there are skills and strategies that a caregiver can learn to help maintain his/her own health, and make the job easier.

After the “Crisis” stage, which often involves treatment in the intensive care unit and a rehabilitation hospital, the survivor finally comes home. The “Multiple Transitions” Stage begins when the survivor and family start to make a new life at home.

After months or years, many families enter a “New Normal” stage where they adapt to changes, set up new family roles and routines, and weave rehabilitation into their daily life. During the crisis stage, if anyone told us a life full of changes would seem “normal,” we’d think they were crazy! And yet it does happen.

Challenges still abound, but there is more stability. The survivor and caregiver may feel more empowered, even though the adjustment process is ongoing. Complicated treatments go more smoothly because of practice. I knew Alan and I had reached the “New Normal” about a year after his brain injury when we his cognitive rehab was integrated into our day without thinking about it. We knew how to communicate well, and felt like a couple again.

Caregiver’s Emotional Responses

You may continue to have some of the same feelings as in earlier stages. That includes anxiety, anger, resentment, sadness, irritability, happiness, pride. Finding respite often enough becomes even more important as time goes on. Having a consistent stress resilience plan is crucial. You may want to share your valuable experiences and know-how with others in the brain injury world. You might find juggling competing responsibilities more manageable or more exhausting depending on how much support you receive. Maybe you focus on the rewards of caregiving more than the burdens.

Eight Skills for Caregivers

1. Be prepared for setbacks and new problems.

I kept a tote bag packed for emergency hospitalizations. It contained clothes, toiletries, Alan’s games and books, all medical info. For many survivors, brain injury can be a chronic disease that leads to other problems. Trust your intuition about changes or new symptoms. Keep a list of observations, even if you don’t know what they mean yet.

2. Update your personal image inside and out.

Who are you now that some time has gone by? Are you satisfied with your self-care plan, or does it need an upgrade? Are there core parts of you that were set aside but you want to reclaim? I started taking yoga and writing classes for my enrichment while Alan’s home health aide was with him.

3. Pursue a personal goal without guilt or regret.

Caregivers have rights too. You deserve time to relax, visit friends, take an online class, or enjoy a hobby. Take small steps and you’ll get to your goal!

4. Get involved in ways that contribute to your values and energize you.

You might like to lead a support group, speak about caregiving at a local meeting, advocate with legislators. Your experience is very valuable. Just know when to say “no” to requests to preserve your energy and health.

5. There is no expiration date on a circle of support!

Don’t worry about asking for help even years after the injury. Friends can choose to participate or not. Try to enlist new people- neighbors, aides, volunteers. We asked friends to bring a meal one day a week for years. Other neighbors offered to mow the lawn or walk the dog. Many people were more comfortable doing tasks than visiting with Alan. I needed to be sensitive to their preferences and adjust my expectations. One new friend even helped me do our income tax!

6. Respite, respite, respite!

Stress usually doesn’t go away as time goes on- the sources just change. Longer-term caregivers can be at risk for depression, compassion fatigue, and medical illness. Take time for yourself daily. Arrange for time away at regular intervals, no matter what it takes. I found that when I went away for a weekend, I could look back on our situation more clearly, see what other resources we needed, and choose to return.

7. Demand the training and information you need.

As new challenges arise, or the survivor wants to progress further in rehab at home, the caregiver needs coaching, referrals, or money for more services. Advocate for yourself in every way possible. There is a huge need for skill coaches who can make home visits.

8. Give your health equal time.

Keep up health maintenance appointments. Exercise regularly even by walking up and down stairs. Take good care of your mental health.

What has been helpful to you in the “New Normal” stage? Please share a comment below.

In my next post, I’ll talk about skills for caregivers as they and their survivor age with brain injury.

July 27, 2011

2 responses to “Eight Tips for Caregivers in the “New Normal” Stage after Brain Injury”

  1. Janet Cromer says:

    Thank you Marilyn. I would like to talk about writing a tip card. I often speak at conferences and workshops about caregiver skills for each stage of the journey.

  2. Marilyn Lash says:

    Dear Janet,
    I think you’ve got the beginning of a great tip card and would love to talk with you about this. People talk a lot about the “New Normal” but this is the first time I’ve seen a discussion of the skills that are needed to get there!

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