Twelve Skills for Caregivers and Survivors Aging with Brain Injury

Brain Injury Blog 

Twelve Skills for Caregivers and Survivors Aging with Brain Injury 

by Janet Cromer, RN, MA, LMHC

In earlier posts, I’ve shared skills for family caregivers during the seasons or stages of crisis, hospital homecoming, and the new normal.” Many people who sustain a brain injury live for many years. At the same time, older people are being diagnosed with brain injuries from falls, accidents, strokes, and other diseases. Aging with brain injury is the subject of much research and interest in the brain injury community now.

Many caregivers provide direct care, selective assistance, or support for their loved one for decades after the injury. As surprising as it can be to recognize, the caregivers are getting older too! Caregivers are at even greater risk of developing health problems than non-caregivers.  Responsibilities multiply as the years go on. You might be worried about who will care for your loved one if you become ill. You might feel depressed or burned out by years of caregiving. You’ve probably become an expert on rolling with changes and fighting for the best treatments. Perhaps you’ve become involved in the brain injury community in satisfying ways, but you’re dealing with your own health or aging concerns.

Here are a dozen tips: 

  1. Face the future, even when it hurts. Spend some time thinking honestly about areas you need more help with now, and how to arrange those services. Anticipate changes that necessitate advanced planning. If you have not done so already, consult an eldercare lawyer about legal documents and financial planning. Get information on supervised housing, assisted living and skilled nursing facilities even if you don’t need them now. Knowing about available resources in advance gives you more control when a situation arises. Be open to new ideas.
  2. Put an emergency plan in place in case you become ill or need to be away. Identify and train a few people who are willing to help in an emergency. Get the numbers of local home care agencies. Keep all contacts, medications, and medical issues up to date in a binder. Have a section for the survivor’s information and a section for your information! Include specific details about the survivor’s routine, communication strategies, preferences, and ways of preventing and managing any behavioral concerns. Alan wisely insisted on adding a page called “What Alan wants helpers to know about him.” On the page, he included facts about his life, his family, his accomplishments, and his interests. He made sure helpers saw the whole person, not just a debilitated man.
  3. Prioritize your own physical and emotional health. Take care of your whole body. Make time for health maintenance appointments for yourself and your survivor. If you feel depressed or anxious, give yourself a “tune-up” with a therapist or counselor. Sharing your concerns, feeling heard, and learning a few new mood management skills give resilience a boost.
  4. Revise your self-care plan to reduce stress. Give extra attention to mind-body practices such as meditation, relaxation, cognitive restructuring, Tai-chi, and yoga. They’ve been proven to help reduce the stress that contributes to high blood pressure, heart disease, and chronic pain. You need and deserve more respite as time goes on, not less!
  5. Correct sensory changes. We all have changes in vision and hearing as we age. The survivor may already have impairments from the injury. Be on the lookout for subtle changes, and get an evaluation. Alan enjoyed conversations much more after he began using hearing aids.
  6. Use assistive technology to foster safety and independence. Ginger Bristow Gaitor shared some favorites on this blog. There are also medication distribution systems and alarm systems to signal emergency contacts.
  7. Prioritize skills to keep practicing. Focus on the cognitive skill or job that matters most to the survivor. And know when to revise your strategies. Alan pointed out to me that some games and puzzles he’d used early in rehab were too hard for him a few years later. Address the change with dignity, then find a new hobby or craft to enjoy. Alan loved painting suncatchers to give as gifts.
  8. Think outside a specific disease. Look into services offered by your city or state Elder Health agencies or Department of Aging Many of the big issues such as home care, housing, nutrition, and financial issues are common across diseases.
  9. Resist the pull towards isolation. As health concerns make it harder to get out, the risk of isolation increases. Look into community transportation options. Join a group or have lunch at the local senior center. Try a free concert at the shopping mall. Participate in a church or faith community. Invite a support group pal to have lunch after the meeting. Alan and I took tai-chi classes at our community health center. While the instructor guided Alan through the moves, I could focus on soothing myself.
  10. Take advantage of aging resources. Now that there are millions of baby boomers, there are lots of products and websites to keep our minds sharp and lives organized. I noticed that the brain games I started using in middle age were based on the same principles as Alan’s memory strategies from rehab. We enjoyed trying these games together on the computer. Alan didn’t feel as ashamed of his memory loss when he realized, “Hey, everyone needs to use tricks to remember things.”
  11. Reduce the risk of accidents. Falls are the leading cause of brain injury in the elderly. Take up rugs and place reflective strips on stairs. Install hand rails in the bathroom and shower. Consider bed rails or a mattress alarm if the survivor has trouble getting up safely. Make sure slippers and shoes fit well and have non-slip soles. If you have outside stairs, is it time to build a ramp on the house?
  12. Advocate for yourself and others. Many researchers are studying aging with brain injury. Share your story with healthcare professionals, public policy makers, legislators, and the media. Tell them what services you need, which ones you are receiving, and what needs to be improved. Consider getting involved in a brain injury organization, advisory board, or community committee. The wisdom and expertise you have gained over the years is extremely valuable!

3 responses to “Twelve Skills for Caregivers and Survivors Aging with Brain Injury”

  1. Janet Cromer says:

    Thank you Barbara and Ginger. I try to remember that the relief I felt after making the dreaded appointment and getting some answers cancelled out my anxiety before the appointment. The issue was still there, but I didn’t feel so alone with it.

  2. Janet, excellent advice! I always appreciate the way you put everything in simple, direct language, and the compassion you show in all your blog posts.

  3. Ginger says:

    Janet, what a wonderful collection of ideas. Some I can still not face. But your kind and simple reminder bring them to my mind to get going again on some of them. Thank you, Ginger

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