By Lisa M. Petsche
Jack, age 80, was diagnosed with Alzheimer’s disease three years ago. His 75-year-old wife, Agnes, is finding it increasingly difficult to care for him. He is starting to get his days and nights reversed, sleeping during the day and becoming wide awake at night. He has slipped out of the house on one occasion and couldn’t find his way home; Agnes had to call the police to help find him. She can no longer leave Jack alone for even a short time.
The contribution of informal caregivers like Agnes often goes unrecognized in our society. These unpaid helpers provide practical assistance and enhance the quality of life for ill older people who might otherwise require placement in a long-term care facility (commonly known as a nursing home).
Typically, they are spouses or children; many are seniors themselves. The majority are women.
The loved ones they care for have physical or mental impairment (perhaps both) caused by one or more chronic health conditions, with stroke and dementia being most common.
The caregiving role involves physical, psychological, emotional and financial demands. It is a heavy load, exacerbated by the limited availability of community support services.
But there are rewards for caregivers, too. These may include a closer relationship with the care recipient; increased creativity and assertiveness; increased insight into their own strengths and limitations; a general increase in compassion for others; re-thinking of values and priorities; learning to live in the present and appreciate the simple things in life that make it enjoyable. Then, too, there is the satisfaction of knowing they are doing something meaningful.
The caregiving journey can be a long one, though, and particularly challenging when the elder has heavy hands-on needs, a demanding personality, or mental impairment. A variety of emotions may be experienced along the way, including sadness, grief, frustration, anger, resentment, guilt, anxiety and loneliness. Burnout is common, due to the physical toll of caring for someone who is ill and the emotional strain of dealing with the suffering and deterioration of a loved one.
While a certain degree of stress is inevitable, burnout is a serious matter. It’s important to watch for physical warning signs: chronic exhaustion, sleep difficulties, significant weight loss or gain, frequent illness and development of chronic health problems.
Emotional red flags are frequent crying; frequent irritation by small annoyances; difficulty controlling one’s temper; feeling overwhelmed; a sense of hopelessness; and feelings of inadequacy. In severe cases, burnout can lead to abuse of the care recipient; this signals the need for immediate help.
If you are a caregiver, here are a dozen strategies to keep stress manageable:
- Look after your own health: eat nutritious meals, get adequate rest, exercise and see your primary physician regularly.
- Find something relaxing you can do to give yourself a break every day — whether it’s quietly enjoying a cup of tea, reading something uplifting, writing in a journal, calling a friend or listening to music.
- Stay connected to your friends and important groups.
- Simplify your life. Set priorities and don’t waste time or energy on unimportant things.
- Accept the reality of the illness. There is nothing you can do to stop it.
- Don’t get overwhelmed; take things one day at a time. Recognize that there will be good days and bad days, and what you can give may vary from day to day.
- Remind yourself that you are doing your best, and are only human. Give yourself permission to feel all emotions that surface, including resentment and frustration.
- Acknowledge that you can’t – and shouldn’t – do it all alone. Find at least one person you can talk to openly, who will listen and understand. Accept offers of help. Ask other family members to share the load, and be specific about what you need.
- Talk with other caregivers. Join a community support group (some offer concurrent care), or an Internet group if it’s hard to get out.
- Take full advantage of respite services in your community, such as adult day-care programs and facilities that offer temporary residential care.
- Learn as much as possible about the illness and its management, and educate family and friends to help them understand.
- Don’t promise your loved one you will never place him or her in a long-term-care home, since you don’t know what the future holds.
If you think looking out for your own needs is selfish, remember that you can only take good care of your loved one if you take good care of yourself.
Lisa M. Petsche is a medical social worker and a freelance writer specializing in health and elder care issues.