We’ve said it so many times, it sounds painfully familiar: there may be no tougher task than being a caregiver for a loved one suffering with Alzheimer’s disease or some other form of dementia. It’s an experience shared by more than 16 million Americans, according to the Alzheimer’s Association, who provide unpaid care day in and day out to family members and others with dementia.

Ask a Caregiver Who Knows What It’s Like

But what is the caregiving experience really like emotionally? Perhaps the best way to find out is to ask someone who has actually been a caregiver for someone with dementia. That’s the compelling approach in this just-published article from the Self magazine website, giving advice and deeply personal reflections from people who have been there, under the title “8 Things No One Tells You About Being a Caregiver for Someone With Alzheimer’s Disease.” We think it’s a must-read.

“Providing care for a loved one with Alzheimer’s disease immediately inducts you into an unfortunate club of people whose relatives have this condition,” the Self article says. “No one wants to be a member, but given that around 5.5 million people in the United States have Alzheimer’s, many, many people are.”  The article goes on to say that, in spite of the millions of people affected, “there’s no roadmap for dealing with life when someone you love has Alzheimer’s,” adding that it’s “unbelievably tough” to find yourself thrust into this role for which most feel woefully unprepared.  Each one of these “eight things no one tells you” could be a story in itself. As you read this list, we suspect caregivers will find themselves nodding in agreement, and others will begin to see the great challenge of being a caregiver in a brand-new light.

8 Things Caregivers Want You to Know

• A New Way of Grieving: The Self article quotes a woman who cared for her ailing father for three years until his death in 2015. She says she was “ill-prepared for how much grief she experienced” during the course of her father’s decline and eventual passing. Because Alzheimer’s disease is progressive, sufferers decline over time, a fact that actually heightens the sense of loss. “It would be crushing if these changes happened all at once,” Self says, “but the progression of Alzheimer’s stages is its own kind of awful.” As this woman puts it, “You have to learn how to grieve losing someone while they’re still alive.”
• Learning to Trust Your Instincts: Another woman, this one in her 20s, resents being criticized as she cares for her mom with dementia. “It is hard to explain what I am feeling to those my own age, and for a while I felt distant from friends,” she says. “In addition, older friends/family who have gone through similar experiences feel the need to judge or criticize how I treat my mom and offer up ‘suggestions’ for [how] I should act. I wish I had known from the beginning to just listen to and trust myself, because I am the only one who knows what it feels like to be in my own circumstance.”
• No Two Patients Are Alike: “Alzheimer’s affects everyone differently,” one caregiver told Common symptoms include memory loss, reduced reasoning ability, inability to perform familiar tasks, and personality changes like depression, apathy, social withdrawal, mood swings, irritability and aggressiveness. But every situation is different, which makes the experience of each caregiver uniquely challenging.
• The Power of Empathy: Isolation is one of the hardest facts of life for caregivers, the Self article says. “The most comforting feeling I found was talking to someone who could relate,” said one caregiver. The article urges readers to overcome isolation by connecting with others through resources offered by the Alzheimer’s Foundation of America and the Alzheimer’s Association.
• Helping Without Being Asked: The Self article describes how feelings of guilt often keep caregivers from taking time off for themselves. This lack of “self-care” contributes to a sense of being completely overwhelmed with the endless work of caring for a loved one with dementia. Describing this need for respite care, one woman told Self, “I should have said, ‘Can you come over on a Wednesday without me having to ask so I can go to the gym for an hour or get my nails done?’” Those of us who know a caregiver need to be alert for opportunities to help out even if unasked.
• Preparing for a Financial Hurricane: “Alzheimer’s hits you hard financially,” said one caregiver, and the statistics from the Alzheimer’s Association bear that out. They report that in 2016 the average dementia caregiver spent nearly $10,700 in annual out of pocket costs. Almost 60 percent had to adjust their work hours to accommodate a loved one’s need, and nearly one-fifth cut back from full-time to part-time work. One in 10 quit outside work entirely.
• Every Day is Different: The progression of dementia ensures that, just as no two patients are alike, no two days are the same. “There will be good days and bad,” one woman told Self, and just knowing that makes the bad days easier to take.
• They’re Still the Person You Love: As hard as it may be, several caregivers stated how important it is to find joy in the current relationship with your loved one instead of spending all your time mourning the past or dreading the future. “Appreciate your loved one every single day. Be grateful for how much they can do in that day, in that moment,” said one woman, who now says she tries to savor the experiences she and her mom can still share.

Caregivers Are Not Alone in the Journey

If you’re a caregiver for someone with dementia, or if you know someone who is, we suggest this helpful article. We also echo the recommendation that caregivers seek help and advice from the local chapter of the Alzheimer’s Association or the Alzheimer’s Foundation of America. Remember, when it comes to dealing with issues related to dementia, caregivers need to know they’re not alone.

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(originally reported at www.self.com)