I used to get an influx of geriatrics consultation requests right after the holidays. Families had heard the usual pleasantries when spoke to Mom every week on the phone, but they’d come home to find her wearing the same clothes every day, burning food, and putting her keys in the freezer. These discoveries would erupt into conflict as some family members clung to denial, berating others who were trying to get a clue.
D’Nile ain’t just a river, and you should show compassion for the folks who want to stay in Egypt. Once you admit that your spouse, parent, or other loved one is different, once you allow yourself to feel the word “Alzheimer’s,” nothing will ever be the same. You will have to put “caregiver” at the top of a “To Do” list that already weighs you down. More important, the lap you’re used to cuddling in will close, if it hasn’t already. You may also find yourself pulled back into a toxic situation you thought you’d escaped- all this on top of knowing you’ll have to pay the piper for holiday over-eating and over-spending in January! No wonder people want to wear those rose-colored glasses a bit longer.
The problem is, if you cover your eyes, you can walk off a cliff. They say knowledge is power, and that’s true, no matter how much it hurts. No matter who identifies a problem, no matter how much you dislike, or resent that person, have a professional answer the question. Start with you primary care physician, but be aware that most PCPs have no specific training in elder care, or dementia evaluation. After the PCP rules out medication effects, infections, blood abnormalities, or other possibly reversible conditions, ask for a referral to a geriatrician, or Alzheimer’s research center. Geriatric psychiatrists and neurologists are other choices, and any of the professionals will probably work with a neuropsychologist whose test results will explain exactly what functions your family member can and cannot do. This is critical for decreasing caregiver frustration caused by unrealistic expectations, but it can also allow you to modify the environment to play to your senior’s strengths. Does he remember what he hears, or than what he sees? You can call to give reminders, but that won’t work if he only remembers what he sees. Then, lists, calendars and labels become important.
Once you have the diagnosis, information, and resource lists, you have a sword and shield as you step out on the caregiving battlefield, but like any other war, you need comrades and strategies. You’ll find this in caregiver support groups. Some families worried that these meetings would be “pity-parties,” saying, “I feel bad already. I don’t need to hear somebody else’s sob story,” but that hasn’t been the experience of most families I’ve referred. You learn strategies, resources, and obstacle-avoidance from more experienced caregivers. I’ve also seen caregivers feel more confident in their skills when they realize that they have useful information to offer newer caregivers.
After refusing to ask a doctor what’s going on, the next largest mistake caregivers make is to suffer in isolation. You are not alone. Today, the Sandwich Generation is a triple-decker club, as mid-life adults support seniors, children and grandchildren while they work, plan for their own retirement and try to have a life. Look around; almost everybody is doing this, or worried about doing it in the future. Humans are pack animals don’t do it alone. Several churches in the Chicago area have banded together to form caregiver support and resource navigation groups. At work, if your Human Resources, or Employee Assistance Program officer won’t help pull this together as a corporate strategy, find a time that works for most of you (I think lunchtime, brown-bag sessions work best,) and get together. Click on my Caregiver tab for resources you can share and discuss, including my book, TO SURVIVE CAREGIVING: A Daughter’s Experience, A Doctor’s Advice (the second edition is due out in December 2013). You can also invite someone from the Alzheimer’s Association, a local hospital, area agency on aging, or department of aging to send a community outreach speaker.
You are not alone. Experts can refer you to resources, and help you care for your senior and yourself, but first, you have to realize the person in the mirror is a caregiver, and that person needs help. That’s the best investment you can make in a happy holiday season.