By Bill Herrin
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Caring for someone with a brain injury, especially a family member, is an honorable duty. It’s really well beyond that, and when it’s 24 hours a day, 7 days a week – and for many, without a day off – caregiver fatigue can be all-consuming. This month’s Brain Injury Journey Bulletin delves into the incredibly underrated tasks that caregivers face every day, and how they can deal with compassion fatigue, irritability, and yes…just plain “burnout.”
Knowing a person well before their brain injury, and seeing their behavior change can both frustrate and confuse a caregiver. These behavior changes may reflect the survivor’s struggles with cognitive issues, impaired motor skills, loss of self, memory issues, and other stresses. While a caregiver may be the survivor’s rock and fortress to get through each day, it’s not easy for the caregiver and can weigh heavily. The caregiver’s frustration can build, and lashing out in the slightest ways can take the whole process in reverse, instead of forward.
A great blog article by April Groff, PhD, lists some wonderful prevention strategies for caregivers. They’re well-structured, effective ways to keep from getting frustrated more than necessary with daily caregiving. Here’s a great checklist that I’ve excerpted from that blog article:
Prevention strategies to reduce caregiver fatigue and frustrations
- Establish a structured environment and daily routine. They are essential to reduce behavioral problems related to memory. Having a written daily schedule that is similar from day to day can make it easier for your loved one to remember what is expected and what to do next.
- Keep household objects in the same designated places. Use the same route to walk to a specific location.
- Keep distractions to a minimum and focus on one task at a time.
- Use a memory aid system specific to the person’s needs. This may require writing down key information on a calendar, in a memory notebook, or in a smart phone. It may involve using visual reminders, alarms, or labels.
- Have the person wear an ID bracelet with brain injury status, address, and emergency phone numbers.
Tips for responding to the person with a brain injury
- If the person repeatedly asks a question, provide an answer. Repeat yourself. It’s easy to get frustrated or to feel like the person isn’t listening to you, but don’t take it personally. Remember that it is the brain injury causing the behavior, not the person.
- Stay calm and be patient. Offer reassurance with a calm voice. Don’t argue or try to use logic to convince the person to behave differently.
- Focus on the emotion, not the behavior. Rather than reacting to repetition, try to think about how the person is feeling and respond to the feeling.
- Use memory aids. Refer to calendars, notebooks, smart phones, visual reminders, or other memory aids familiar to the person.
- Engage the person in an activity. Provide structure and try to engage the person in a pleasant activity.
- If the behavior isn’t harmful, try not to worry about it. Find ways to accept and work with it rather than trying to stop it or change it.
A person with a brain injury carries a heavy load – and everyone handles their own situation differently. When a survivor hit’s the point of “overload”, they can become upset, they may lash out and say things that they don’t really mean. All these things can wear down the caregiver’s energy and patience. Every time this happens, don’t forget that the person may not recall “acting out” prior to this. This “reset” technique will limit any negative response to them – no matter how hard it is to do at the time. Keep in mind that it’s how they’re feeling at the time. Frustration for the caregiver is going to happen, but just maintaining a good level of empathy will help things go better, and in a more positive direction.
There are plenty more incredible insights on the aforementioned blog by Dr. April Groff, and the link to it is here. Print it out, and you’ll have a truly incredible checklist of useful pointers, encouraging tips, and helpful information for a caregiver to refer to.
Caregivers get angry too
Taking the discussion a step further, caregiver fatigue and anger can result from slow progress after a brain injury, coupled with financial stress, competing demands of other family members, and
anxiety about the future. Hearing questions being asked again and again, dealing with angry outbursts by the survivor, and coping with frustration over daily routines, etc. – all can pile up into a “mental mountain” for the caregiver that is coupled with physical exhaustion. In Janet Cromer’s blog post “Take the Danger Out of TBI Caregiver Anger”, she offers sage advice on dealing with cognition and memory, changes in relationships, and handling a survivor’s anger and irritability.
Ms. Cromer succinctly notes the process in this simple sentence: “Many TBI caregivers describe this cycle of anger, guilt about feeling angry, then anger about feeling guilty.” She draws from her own personal experiences as a caregiver for her husband, and as a mental health professional. For plentiful, and invaluable advice – you can read her full blog article here.
To close, Lash & Associates, a leading publisher of products for the Brain Injury Community, offers tons of blog articles on our award-winning website. Keyword search your topic of choice (relating to PTSD, concussion, brain injury, etc.) and see all that is available! Our product line is broad and extensive, as well. You can search our products at www.lapublishing.com
We hope you have some great “takeaway” from this month’s Brain Injury Journey Bulletin, and we hope that you share it with anyone that can benefit from a free email subscription to receive it monthly. Sign up HERE!
Until next time,
The Lash & Associates Team
via caregiver fatigue for TBI is an ongoing challenge