My first caregiving role began when I watched Multiple Sclerosis slowly rob my wonderful Pop of his ability to function independently. I was 10 years old. Three years later my father’s employer visited our home to tell us he could no longer provide health insurance for Pop. I don’t know the details of the lost coverage; I only remember the look on my father’s face wondering how he was going to support his family and how much longer he would be able to work and pay for medical care. All those decades ago, there was little or no support, zero medical treatment and exactly the same amount of hope. For 18 years I watched my father lose his capacity to even scratch his own nose while his mental capacity remained 100% intact.
My second caregiving job began two years later when my gentle loving Mom came home from her shopping trip without our car. She’d forgotten where she parked the car and took the bus home. The following week we received a call from the grocery store where Mom shopped: she’d forgotten she drove herself to the store and had been sitting on the bench outside for an hour waiting for someone to take her home. All those decades ago, a neurologist diagnosed Mom “Atrophy of the Brain” (now called Alzheimer’s disease) for which there was zero medical treatment, no support of any kind, and exactly the same amount of hope. I was 14 years old. For 12 years I watched my mother lose her ability to think, talk to me, or remember my name, while her body remained 100% intact.
Now, many decades later, I’ve met thousands of dedicated, loving, smart, caregivers from 23 years old to 84 years old. Almost all have the same concerns: without orientation, training or significant assistance, you are expected to know how, when, and how much to intervene, how to manage medications, how to evaluate a nursing home, how to keep your loved one safe in a nursing home, how to cope with Alzheimer’s Disease, and how to resolve a host of other new and life altering caregiving dilemmas. One of the hardest tasks caregivers face is managing their loved ones’ needs while trying to maintain their own quality of life. Add the continuous decrease in services and benefits and the pitfalls of managed care, and it’s easy to see why caregivers quickly become overwhelmed.
You are not alone. Caregivers account for over 1/3 of the U.S. Population. We need to stand together and help each other. Stop what you’re doing right now and make a vow. Say it with me, “This journey is too long and too hard to go it alone. I will seek out and accept help.”
Education, planning, and professional advocacy are the keys to regaining and maintaining your quality of life. You’ll find them all on this website—clear, practical solutions for everyday problems, recommendations for reducing stress, worksheets to help lighten your load, clear “how-to” information on how to implement changes, hire a home care worker, communication with physicians, and information on what to expect as Alzheimer’s progresses. If you have a problem that isn’t answered here, just click on “Dear Judie,” and send me your question. If you have a tip for other caregivers or a success story, we’d like to share your information. We can all learn from each other. How do they send ideas?
I am in awe of your courage and strength.