Caregiver Insights
Dealing with Challenges
Stress
For dementia caregivers, what do short-term memory loss, repetitive questions, poor concentration, faulty reasoning, confusion, and disjointed conversations have in common? They create stress. And as the disease progresses, the stress intensifies and can dominate our lives. Stress is the biggest threat to our health, happiness, and ability to fulfill our caregiving responsibilities. So, reducing stress should be high on our list of priorities. Here are some suggestions that may help.
Perspective
More than 100 years ago, William James wrote, “It is our attitude at the beginning of a difficult task which, more than anything else, will affect its successful outcome.” Some things never change. Attitude is everything. And it’s the foundation of our successful journey as caregivers.
We should allow ourselves to feel sadness, frustration, and grief when they appear. They are normal intrusions that come with dementia caregiving. Suppressing these emotions allows them to simmer and can lead to burnout. But our goal should be to limit them to situational moods and not let them destroy the future. Life has always had its ups and downs. There will be better days. As Holocaust survivor Viktor Frankl observed, adversity can be overcome by embracing “the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.”
We have capabilities and powers we don’t always realize. The love, caring, and giving we provide as caregivers is uplifting, both for us and our loved ones. Because caregiving is honorable work, it reenforces our self-respect and self-confidence. And in doing so, it can help insulate us from the darkest enemies of caregiving – self-pity and depression.
Growing and Connecting
Since we never planned on becoming caregivers, we are not well prepared when it happens. It feels like waking up alone in a dark room and not knowing which way to turn. But millions of people have traveled this path, and our journeys will be immeasurably better if we take advantage of the wealth of knowledge that is readily available.
The Alzheimer’s Association is the dominant organization in the field of dementia, the leading provider of funds for dementia/Alzheimer’s research, and a rich source of information valuable to caregivers. Books like The 36-Hour Day and Creating Moments of Joy are great written sources of information. But we believe that connecting with people who have experience dealing with dementia and Alzheimer’s is the most effective way to find solutions for the daily problems caregivers face. Friends can be helpful, but they often don’t understand the journey. Professional caregivers, social workers, and other family caregivers who have and are facing similar issues have a deep understanding of the emotional and practical issues we need to overcome. They can provide feedback on the personal challenges we face.
Support groups are cathartic and invaluable. Getting out of our homes and interacting with knowledgeable people has the additional benefit of reducing stress, isolation and loneliness.
Adaptability
All caregivers experience periods of disillusionment and frustration, because caregiving for people with dementia and Alzheimer’s will forever be challenging. But adaptability will determine how well we survive the journey. We cannot control the outcome, but we can shape the journey by recognizing that people with dementia are invariably changing. Whether it is temporary mood swings or the inevitable long-term decline, caregiving requires us to be aware of and sensitive to our loved one’s needs. As Ralph Patrick has observed, people with dementia are the “pilots,” and caregivers are better off helping them steer rather than meeting them head on. Focusing on helping our loved ones feel comfortable through the inevitable changes smooths the ride and helps us feel that we are doing the best that we can.
Self-care
Patience is important (one caregiver observed, “You better be patient, or you’ll become one”). But patience has its limitations. Stress is magnified when caregivers are isolated and fail to take breaks away from never-ending demands. We are human, and we need time to revitalize. Finding friends, volunteers, or paid companions to regularly comfort our loved ones so that we can take breaks helps us maintain balance in our lives and avoid burnout. In Creating Moments of Joy, Jolene Brakey observes that rather than hiring a professional to take care of them, you are better off hiring a bartender or beautician – someone who is extroverted and likes to chat. Their age or experience doesn’t matter. What matters is their ability to be instantly liked.
Self-care is not selfish, it’s sustainability. Sleep, rest, nutrition, exercise, mindful meditation, and laughter, all help to reduce stress. Adult conversations are stimulating and refreshing. Journaling has the additional benefit of providing a cathartic experience. We can also find stress relief through non-traditional, creative, and personal approaches (e.g., doodling, sketching natural scenes; getaways with pets; roleplaying memories; listening to nature’s sounds – birds, waterfalls). Your own health is your first responsibility and demands your attention.
If these suggestions don’t work, please consider getting professional help. Stress left unattended can result in terrible consequences.
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