Caregivers Balance on Giving/Keeping Train Tracks

Have you ever walked a set of train tracks? The tracks split the horizon’s corn fields, forests, cliffs, or whatever terrain you’re in. Sometimes, straight-ahead, sometimes curving, the tracks also lead you toward the horizon. Miles of parallel rails give you goals and steely resolve to get there. Wailing whistles from afar do not deter you from your journey. Only when the train’s rhythmic clacking echoes in your ears and its rotating beams blind you can you know you’ve reached the horizon. Your walk is over—almost.

Sometimes I feel elder care is like walking on train tracks toward a horizon-goal of loving your parent well until he or she dies. Normal-sized people walk the wooden ties under the tracks; only a giant could actually reach both rails with his feet. But if you’ll give me license to imagine elder care with one caregiver foot on each rail, I’ll continue with this word picture.

The horizon is the true end—the “Well done, good and faithful servant” we all want to hear regarding how well we loved our aging parent. The train is Mom or Dad’s physical death. Changing landscapes are new diagnoses, physical and mental declines, varying demands of managing two lives—yours and your parent’s. The rails you must balance on are the giving-to-your-parent rail and the keeping-for-yourself rail.

When Mom or Dad is rushed to the ER, we sprint on the giving rail until we’re completely sapped or the crisis passes, whichever comes first. When we take a vacation, we can take a foot off the giving rail, but our loved one is never out of mind, so at best, vacations are limping along with one foot on the keeping rail and one on the railroad ties. When we’re flat-on-our-back sick, we rest on the keeping rail. But most days, we are quite intentional about toggling upright and strong on both rails—tending to our parent’s meals, doctor appointments, bills, social life, electronic traumas, as well as our own.  

Much has been said about the need to take care of your own physical and mental well-being. I will not detail suggestions except to provide a link to an excellent list on Caregiver.com. I really struggle to keep one foot firmly on each rail. The older I get, the more I appreciate how much my parents gave—and give—to me. I wish I could run on the giving rail all the time. Also, the older I get, the more aware I am of my own energy limitations. That blessing, more than any wisdom I could brag about, enables me to accept giving less in order to hang ten on the keeping rail.

When a parent dies, as my father just did, the train flattens you for a time. My walk with my father is over—almost. You lie there trackside in the weeds wondering who you are now, what just happened, and what your life might look like going forward. It’s too soon for me to fully answer those questions. My more immediate concern is when to mount the giving track again to walk with my mother toward a new horizon at the end of the tracks.    

Alzheimer's From the Inside Out

After Richard Taylor's early-onset Alzheimer's diagnosis, he set out to illuminate facts and perspectives about the disease. Go to http://www.richardtaylorphd.com/ to read more or link to his blog. You can also learn about or order his books Alzheimer's From the Inside Out and Live Outside the Stigma, and his DVDs Be With Me Today and 20 Questions, 100 Answers, 6 Perspectives (About Dementia).

Google Fails Me

I might as well ask how many stars span the skies. This side of heaven, however, I will not have answers to my questions. Even Google cannot supply these answers.

For example, once an elderly person begins to slump in his wheelchair, can that be corrected? What causes slumping? Weak bones? Loss of balance? Depression? And if the person has dementia, is it even possible to know the cause?

To all my creatively phrased attempts to find out, Google responds with wheelchair vendors. Google also gave me www.dementiaguide.com, whose symptom library proved interesting but did not address slumping.

Another question I posed to Google was how to handle an Alzheimer’s patient’s teeth loosening. What are the contributing factors? How can we prevent further tooth loss? What’s the best thing to do with two already wobbly teeth? Google gives me only sites that propose a reverse order of things: Loosening teeth might predict Alzheimer’s.

My overarching, most emotional, question—I’m not sure how to phrase for Google. I feel helpless and twice removed from my father’s medical decision makers. The doctors talk with the nursing home staff, who in turn, communicate with the family. But when I ask why a doctor made a decision, the staff doesn’t know. They may offer to find out, but never call me back. And only when I ask why an oxygen machine is in Dad’s room do I find out he had a syncope incident over the weekend. Only when I happen to show up the day after my father spiked a fever does a nurse tell me about it. I can’t blame her for forgetting; she’s got several dozen people’s medical incidents on her mind. And nurses are pretty good about calling my mom and me about bigger things.

Still … I often feel helpless and somewhat cowed by institutional barriers. It’s easy to accompany my noninstitutionalized mother to her doctor appointments; direct access is the norm. Once my father entered the nursing home, family doctors were out; nursing home doctors were in. But I think the time has come to contact my father’s nursing home’s doctor and dentist directly. I would just feel better if I had a few more answers.

The Emotional Journey

This video testifies to the grief process of caring for a loved one with Alzheimer's as being some of life's best moments. Interviewees in this video have written books on their emotional journey. Check it out:

http://www.youtube.com/watch?v=vm2oGeHtHrc