Becoming a caregiver can be overwhelming, especially when it happens suddenly and you are not fully prepared to embark on, unbeknownst to you, your caregiver journey. It can be like becoming a new parent. You are now responsible for ensuring that your loved one gets the best care and advice. You hear other people’s stories of how they did it, read lots of how-to manuals, attend workshops and seminars, but you truly don’t know until you experience it.
In preparing Mom’s medication, my 90-year-old Pop would fill a syringe using the light of the kitchen window to see if the dosage was correct. He set up the nebulizer on a table with handwritten step-by-step instructions to remind him how to operate it. Today, millions of family caregivers like Pop perform complex medical tasks that at one time would have been administered only by medical professionals.
Across the country, about 40 million Americans are doing an overwhelming, stressful and exhausting unpaid job every day. They cook meals, drive to appointments, manage medication, perform complex medical tasks and more. They help parents, spouses and other loved ones live independently at home — where they want to be. They are family caregivers.
I recently read a disturbing news report about a 69-year-old man in Florida who apparently killed his 89-year-old mother and then committed suicide. Police reported that he left a note stating that his mother, who lived with him, had advanced Alzheimer’s disease and that he was having extreme difficulty caring for her. The story absolutely breaks my heart. While I have certainly never felt that low, as a caregiver for someone with Alzheimer’s, I do have some insight into the feelings of overwhelming hopelessness this man must have endured to be driven to such a horrific action.
When Dad was diagnosed with Alzheimer’s disease, I knew he would need all of his senses to help interpret the world around him and balance his changing cognitive abilities. But he has hearing impairment and limited vision (glaucoma plus visual-processing problems associated with Alzheimer’s). Even though there is only so much I can do about the visual issues, I assumed hearing aids would solve his auditory problems. I was wrong. The good news is that we eventually discovered a surprisingly simple solution.
The phone rang one day when I was at work. It was my mom. “Come right away, Elaine, we need you,” she said. Mom had just driven Pop to the emergency room. I knew Pop must have been very sick, because Mom hadn’t driven a car in years.
I have been both a live-in caregiver and a long-distance caregiver. In fact, currently, I’m really both. My dad lives with me (as do my sister and her two sons at the moment), and I also travel for work, about a week every month. I’ve learned to manage my loved ones’ care no matter where I am. Here are some of my tips for other long-distance caregivers.
The way Alzheimer’s disease has ravaged my dad’s capabilities is especially hard to bear during holidays. I wish he could more fully participate in and enjoy our family traditions. So often it seems that he just doesn’t understand, and the meaning is lost for him. Recently, though, he gave me my most unexpected and treasured Christmas gifts ... and taught me invaluable lessons at the same time.
It’s that time of year when many families gather for holiday celebrations and check in on loved ones. It can be a tough combo, creating a celebratory mood while also dealing with serious family issues. I get a lot of questions from family caregivers about how to handle difficult conversations that come up around sensitive topics such as driving, personal care, housework and finances. Here are my top tips for setting up a successful conversation.
I recently had the great pleasure of representing AARP on The Doctors to share some of my top caregiving tips, give away copies of my new book, Juggling Life, Work and Caregiving and tell everyone about AARP’s Random Acts of Kindness for Caregivers contest. (You can watch the segment, below.) It made me think about what I really want for Christmas this year and it’s exactly that: small kindnesses that free my time, nurture my soul and minimize the stress of the holidays while maximizing the joy.
Now, in the thick of the holiday season, many of us who are family caregivers are facing even more stress than usual, with relatives' visits and extra items on our to-do lists. That makes this a perfect time for us to connect with our fellow caregivers for support and advice. While we can't all gather in-person, of course, Caregiving.com came up with something much easier: a virtual Holiday Progressive Blog Party, and I’m thrilled to participate. Visit the site to find links to a range of caregiving blogs and — if you blog, too — share information about your own.
Nancy was caring for her mother and husband, raising four children, and working full time when she ended up in the hospital, suffering from exhaustion. It was then that she realized that she couldn’t help her loved ones unless she also took care of herself.