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Type A Caregiving: How Do You Manage an Unmanageable Illness?

At times, caregivers may experience a lull in the action. Their family member’s condition stabilizes, which gives everyone the chance to come to terms with the “new normal” and develop a plan for the next steps. At other times, caregiving can seem like one rude awakening after another: Before one crisis is over, another springs up, and you never get the satisfaction of feeling the job is done, let alone done well.

This can be difficult for any caregiver, but for people who like to feel in control of a situation, it can be extremely challenging. How best to go about managing something that seems completely unmanageable?

Accept Imperfections

“We go through life like there is a solution for everything. We have tools and steps we take to deal with things, and we treat other areas of our lives as predictable,” says Valerie Abel, PsyD, clinical geropsychologist and neuropsychologist at the VA’s Harbor Healthcare System. “But dealing with chronic illness or dementia is very unpredictable. You have to take the time to wrap your mind around the uncertainty of what you’re facing.”

Most important, she says, is for caregivers to accept that the situation will never be perfect. “Real type A personalities want to go 100 percent all the time, do the job 100 percent, and you burn out that way. You have to learn to be just okay in doing this job and in not doing it perfectly.”

Anticipate and Plan for Change

As a first step for all caregivers, Abel advises pausing and thinking about what is coming down the road. “You can feel you have the situation under control, but then, as a disease progresses, other problems come up. Chronic conditions can often stay in a constant state of flux, and you have to remind yourself that you only take care of the problem for the time being and prepare for the next change to happen. So assess and prepare. Ask yourself questions like, ‘Are there safety hazards in the home? Will we need to get a safety alert bracelet, or will we need to find someone to stay with Dad?’”

Assess Your Needs

At the same time, Abel says it is crucial that caregivers take a look at themselves and assess their own needs. “When you go on a plane and the flight attendants do their safety lecture, they say to put your oxygen mask on first and then help other people. It’s absolutely true, you cannot be there for the person who needs help if you do not take care of yourself.”

She advises taking the time to consider if you might need outside help, whether that is a family member or friend or a professional home health aide. Also, she says, reaching out to others in your situation, perhaps through a support group or online, can be very beneficial and help avoid feelings of isolation. Additionally, Abel says it is key for caregivers to build in time to relax—by either taking advantage of respite care to do something they enjoy, or making time for relaxation techniques like deep breathing.

Caregiving, says Abel, is often a long-term process, so “it’s important to find a way to make this a part of your life, but in a way that you can live with over time—this is the real challenge because it is a long haul.”

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