July 15, 2011
Ten Tips for Caregivers in the “Multiple Transitions” Stage
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 learn. Fortunately, there are skills and strategies that a caregiver can learn to help maintain his/her own health, and make the job easier.
In an earlier article, I wrote about “Ten Tips for New Brain Injury Caregivers.” That article offered suggestions to cope with the crisis stage when your family member is in the ICU and early rehab. Next might come what I call the Multiple Transitions Stage. That’s when the survivor comes home from rehab at last, and you begin to figure out how to make this new life work.
When my husband Alan came home after four months in the ICU, then rehabilitation, I was overjoyed…and then overwhelmed. Even though I had been prepared to carry over all of Alan’s PT, OT, and cognitive therapy by his therapists, there didn’t seem to be enough hours in the day. Some of your new responsibilities might include:
• Learn to prioritize and triage.
• Prioritize time for your health and well-being.
• Identify your strengths and areas where help is needed.
• Train and direct home care assistants.
• Coordinate out-patient medical and rehab appointments
• Make skill building practice part of your daily routine.
• Manage parenting and work responsibilities.
Caregiver’s Emotional Responses
Everything seems to be changing at once! I remember feeling like my emotions were all over the map – sometimes in one day! While I was happy to live together again, the seriousness of Alan’s deficits became even clearer at home. I had what I called “reality slams” several times. That means I faced up to the changes in his personality and abilities in each new situation and recognized on a deeper level, “Oh, Alan really isn’t the same person.”
Some other common emotions in this stage include anger, resentment, loss, irritability, pride and satisfaction, and ambivalence. Ambivalence comes across as having mixed feelings about the survivor, your new role, and your ability to keep going forward.
Physical and emotional exhaustion might catch up with you now too. Alan had trouble sleeping through the night, so I was often sleep deprived while guiding him through the day.
Ten Skills for Caregivers
Most of all, relax and don’t expect perfection. Everyone is making multiple adjustments and change takes time.
1. Decide your priorities. What matters most to the survivor? To you? Alan chose to focus on learning to read during our practice times, so we let other skills slide for awhile. We revised our top three priorities every few weeks.
2. Seek support. Request a case manager from the hospital, your insurer, or a community organization. Find a trusted person to confide in, perhaps a friend or therapist. Try a support group where the emphasis is on honest sharing of your story combined with learning new skills to keep moving forward.
3. Take 20-30 minutes daily to practice meditation or relaxed breathing. Writing in a journal can also relieve stress and help center you.
4. Beware distorted thinking. We believe what we tell ourselves, so avoid calling yourself names (labeling) or assuming the worst down the line (catastrophisizing).
5. Admit your limitations. Be honest in evaluating which responsibilities you want to take on, and the ones you prefer that someone else take over. If you have a choice at all, ask someone to help. Also think about who can ask to teach you the skills you need to learn.
6. Face problems head on. Take one step at a time to solve the problem.
7. Consider a “Circle of Support.” Ask a friend to organize a group who can pitch in with practical tasks around the home and yard, bring meals, help with child care, visit or help the survivor, etc. There are good online scheduling tools to make coordination easy.
8. Start to identify personal goals and dreams. Take small steps towards your goal.
9. Avoid short-term solutions. Too much alcohol, overeating, smoking, over using prescription drugs can add to your problems in the long run.
10. Celebrate your strengths and accomplishments! Both you and your survivor are making progress every day as you juggle the transitions and move on.
Please share your own tips for transitioning home in the comments section below.
In my next blog article, I’ll offer tips for caregivers who live in the “New Normal” a few years into the post-brain injury life.
To preview Janet’s book, Professor Cromer Learns to Read, click here!