It was the spring of 2000 when my Mom underwent neurological testing at our local Memory Disorder Clinic. She was having cognitive difficulties for about two years prior to the testing.
Her family doctor had attributed her difficulties to TIA’s. TIA’s (transient ischemic attacks) are sometimes called mini-strokes. These extensive tests at the clinic confirmed that Mom had vascular dementia, as well as “moderately severe cognitive decline.” The neurologist pointed out that there was a “high probability” that this dementia was Alzheimer’s. Six years later an autopsy confirmed that Mom did indeed have both forms of dementia.
According to Healthline.com and John Hopkins School of Public Health News : “Life expectancy varies for each person with Alzheimer’s disease (AD). The average life expectancy after diagnosis is eight to ten years. In some cases, however, it can be as short as three years or as long as twenty years. AD can go undiagnosed for several years, too. In fact, the average length of time between when symptoms begin and when an AD diagnosis is made is 2.8 years.”
Caregiving is too big a “job” for one person. A friend of mine compares caregiving to a marathon. He noted that marathon runners usually receive water to drink from onlookers in order to restore their fluids and keep their balance. So too, caregivers need to slow down at times, and “receive” sips of nurturing and respite from others. Using this analogy, consider caregiving as a “team” support effort. Build a team of family, friends, co-workers, and professionals. If your family members are not willing or can’t get involved for whatever reason, then create a family of “choice.”
Cultivate the gift of allowing others to help you. Increasingly depend upon other relationships for love and support. You cannot always be on the “giving” end. The act of receiving is critical for caregivers’ well-being and physical health if you want to remain active throughout the journey.
My caregiving marathon was unlike any prior experience. Every day was an education and sometimes a real eye-opener. I learned that, while I couldn’t control the disease process, I could control many aspects of how it affected me, and how I had a duty to take care of myself. Looking after my own health and wellbeing was critical. Otherwise, I wouldn’t be any good to Mom or to my husband and family, let alone be able to function at my job.
If you decide to care for your loved one at home, be prepared for the myriad of losses, but also the numerous joys and blessings that come your way. It is a lot harder for the person living with dementia than for you. Circumstances may also arise that make it impossible for you to care for your loved one at home. You will still need to be the caregiver, ensuring that his or her needs are met in a different environment.
Here are some steps for caregivers that have been passed down through websites* and blogs. I hope these will sustain you as your marathon unfolds:
- Simplify your lifestyle so that your time and energy are available for things that are really important.
- Structure your day. Develop routines and predictable schedules to make life easier for you and for your loved one.
- Worry only saps your energy. Take one day at a time. Try not to worry about what might happen in the future.
- Have a back-up plan such as pre-arranged respite care, or a friend or relative to call on when you have an emergency or illness strikes.
- Keep your sense of humor and have fun. Laughter helps to put things in a more positive perspective. Plan for outings and things that you both like to do.
- Remember that your loved one is not being “difficult” on purpose. It is the disease that distorts his/her behavior and affects his/her emotions.
- Try to see their “world” as if you were in their “shoes.” Remember that your loved one is so much more than the disease.
- Focus on and enjoy what your loved one can still do. Do not lament over what they can’t do anymore.
- Try to remember their love for you when they can no longer remember.
- Take a deep breath! Remind yourself that you are doing the best you can at this moment.
- Understand your own physical and emotional limitations. Give yourself frequent breaks from caregiving. Even an hour a day is a big help.
- Get regular physical exams. Do not let your health deteriorate.
- Join a support program and learn all you can about the disease.
- Draw upon whatever Higher Power you believe in to sustain you in the good times and the trying times.
I wish you peace, patience, and courage in your caregiving today and every day of your marathon.
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*Carol J. Farran, DNSc, RN, and Eleanore Keane-Hagerty, MA, wrote an article with an adaptation of these items in 1989. It was printed in The American Journal of Alzheimer’s Care and Related Disorders & Research.
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I will be joining others in a 2.5 mile “Walk to End Alzheimer’s,” Saturday, October 24, in Hollywood, FL. I hope those of you who live in the tri-county area can join in this fundraiser. We walk so that someday soon researchers may find a cure! If you want to be part of my team, or make a donation in support of the Alzheimer’s Association, e-mail me and I’ll send you details: Vicki @CaregiverFamilies.com.