When You Can't "Just Do It"
Do you find it difficult to realize your own best intentions, much less the latest health recommendations? What is necessary is motivation - the will to overcome the inertia of habit. Caregivers can play a big role.
If you are one of those people who effortlessly and always does what’s good for you — eats right, sleeps enough, exercises 90 minutes a day, five days a week, manages stress, never gets upset — then don’t read any further. This article is for the other 99.99 percent of us who find it difficult to realize our own best intentions, much less the recommendations of various experts and gurus.
Clearly, knowledge, intelligence, intention and desire are not enough to get the job done. What is key, and necessary, is motivation — the will to overcome the inertia of habit. That is hard under the best of circumstances, and it is even harder for stroke survivors. We talked about this with psychologist Kim Roaten, Ph.D., assistant professor of psychiatry at University of Texas Southwestern Medical Center in Dallas.
Kim Roaten, Ph.D.
Stroke complicates motivation in several ways. First, depression has a significant negative impact, and the majority of survivors experience it at some point. Depression is not caused by a defective personality or lack of willpower; it is because of stress and changes in brain. Depressed survivors often have difficulty with motivation because there is no joy in doing anything. That is one of the defining characteristics of depression — loss of interest or pleasure in activities that were once enjoyed. “Depression tends to have a big impact on somebody’s interest in doing things that they know are good for them,” Roaten said. “They may logically understand that they need to engage in a certain activity to get better, but emotionally and energy-wise, they just can’t get the wherewithal together to do what they need to do.”
If a caregiver suspects his or her survivor is depressed, the first step is asking for advice from the treatment team. Effective treatments are available and generally covered by insurance. It can be very difficult for a survivor with depression to make positive changes and participate assertively in recovery. All of this is equally true for caregivers. Visit StrokeAssociation.org/depression to learn more about depression, including a list of the signs.
Survivors commonly experience fatigue, which also affects motivation. “Fatigue is such an overlooked part of stroke survival,” Roaten said. “I can’t tell you how many times survivors in the hospital have said ‘I would really like to do what you’re asking me to do, but I don’t have the energy to even talk to you.’” Simple changes to the environment and routine can help a stroke survivor and their family to improve sleep and reduce daytime fatigue. (See “Sleep Hygiene” on p. 18.) If fatigue persists, caregivers should mention this to their survivor’s doctor because there might be medications that can help.
The things asked of the survivor in recovery are often painful, embarrassing and exhausting, all of which can inhibit motivation. Rehabilitation activities may initially serve as a poignant reminder about losses. “Those are potentially very frustrating because survivors remember having the ability to do something much more easily,” Roaten said. The gulf between where they were and where they are post-stroke can be very de-motivating.
WORKING WITH LACK OF MOTIVATION
Despite all that, overcoming inertia and changing habits has to happen if survivors are to get better, and that means finding the motivation. Roaten had several suggestions.
Ask what they like
First, identify what the survivor wants to do. The easy way to do this is to ask — ‘What excites you? What do you look forward to? What types of things would you like to be doing in six months? How about a year?’ If the survivor struggles to generate ideas use your familiarity with what motivated them before. “Recall some of those things and bring them to the situation,” Roaten said.
In order to get better, survivors must overcome inertia and change some habits.
Roaten suggests that survivors think about the different spheres of life — work, hobbies, family and friends, in an effort to generate both short- and long-term goals. “Ask yourself, ‘what about those areas is still important to me,’ and then prioritize them.” Expect priorities to change as a result of the stroke — less work, more family is a common reorganization, but each adjustment trajectory is different. The important thing to remember is that survivors are more likely to value a goal that they identify on their own, rather than working toward something determined by a healthcare provider or even a caregiver.
Ask what they don’t like
Just as important, identify what kills motivation. Much of this can be deduced from the survivor’s behavior — what do they go “flat” on. As a psychologist on an interdisciplinary team, Roaten just asks patients very directly to tell her what is frustrating and makes them not want to participate in therapy. “Recently someone told me he hates it when the therapists cheerlead,” Roaten said. “What turns people off is very individualized. What motivates one person will absolutely annoy the next and that makes it hard to figure these things out.”
Give concrete feedback
Success is always motivating, but rehab results can be slow, often measured in incremental improvements that are difficult for survivors to feel good about because they are comparing themselves with how they used to be. Roaten and her team address this by giving daily progress updates. “We make our feedback very concrete, so even minimal gains, when compared to where the survivor started, can be very useful,” she said. “We post signs in the room reminding the survivor of where they started and where they are now to give them feedback about just exactly how much progress they’ve made. This has been extraordinarily useful for some patients, even the ones who were there for a long time.”
Acknowledge reality and reframe
Caregivers may have to deal with survivors on hard days, like when they get the news that they are never going to get back the use of an arm or leg. That situation must be acknowledged: “Pretending it doesn’t exist or like it’s no big deal doesn’t help anybody,” Roaten said. Acknowledge the deficits, recognize their impact, and redirect the survivor to the areas where they have already progressed.
“One of the things that I hear most frequently from survivors is that they feel like they’ve lost control of everything,” she said. In the hospital they can’t make their schedule, or they can’t control their bowels, or they can’t function independently. “In that situation, I work with survivors to identify things they still can control. So for the patient who has lost her left side, we talk about the right side and what she is able to do, what use it still has — a glass-half-full approach.” It may be useful to remind the survivor that one important thing that can be controlled is the level of effort he or she puts toward rehabilitation.
Positive reinforcement is a powerful motivational tool for caregivers.
Survivors get frustrated with caregivers discounting what they have lost. Grieving is a normal part of the adjustment process and survivors may feel that their feelings are being discounted if their sadness and frustration are not recognized and acknowledged to be a part of recovery. “Talk about what’s lost, don’t pass over that grief, but then redirect the focus to what the survivor still has,” Roaten said.
One of the most important things a caregiver can do is provide positive reinforcement. Positive reinforcement occurs when encouragement or rewards are used to increase the occurrence of a particular behavior. For example, when a survivor goes to therapy or gives a good effort, caregivers should give specific and persistent praise. It may also be useful to incorporate the reinforcement into a session — taking a walk outside to get some sun and work on balance/ endurance. “Positive reinforcement is much more powerful than punishment,” Roaten said. “Especially when caregivers are feeling burned out, they have a tendency to ignore or be a bit more punitive.”
“You have to be careful about the ‘carrot’ you dangle, but the survivor can help you with that,” Roaten said. “Ask them what’s important to them, and then find a way to be creative about reinforcing it and using their individual motivator as a reward rather than a punishment. If you focus on the positive rather than the negative, you have a much better chance of shaping behavior in a positive way.”
As a caregiver, it is important to remain attentive to your own fatigue and frustration. Those signs are an indicator that you may need to ask for help so that you can take a break and return to the positive reinforcement program when you have regained your own energy.
When bad stuff is the good stuff
Sometimes people really like their bad habits, e.g. the person whose reward is smoking a cigarette or eating pie and ice cream. Roaten suggests reframing the situation by having an honest conversation: “We both know that you can’t smoke any longer. You had a stroke and smoking increases your risk for another one. I understand this is just one more thing that you don’t have a choice about. The good news is that you have choices about lots of other things and this is a chance for you to take some control of your health. So rather than smoking, what are some other things that you would look forward to? What can we use to get you motivated to continue your therapy?”
Creativity and persistence will help the survivor and caregivers find new ways to maintain motivation and set goals. However, a stroke may be Nature’s way of saying live differently. Find something you love and use it to motivate changes, said Roaten.
SLEEP HYGIENE . . . . . . .
Roaten emphasized the importance of sleep in stroke recovery. “Good sleep hygiene is another way to combat fatigue,” she said. Here are tips:
- Keep the blinds open during the day. Natural sunlight helps regulate the sleep-wake cycle.
- Minimize late afternoon and nighttime caffeine.
- Sleep enough — 8-9 hours.
- Stick to a regular sleep schedule: go to bed at the same time and get up at the same time.
- Minimize napping.
- Avoid engaging in any activities in bed other than sleep and sex.