How to survive, thrive and even find joy in caring for a loved one with dementia.
Compassion can empower you while navigating this difficult role.
There is a risk to limiting this discussion to “the two most important caregiver tips,” given the diversity of caregivers and their care partners. After all, caregivers span the globe and range from young children to older adults. However, these two tips enable caregivers to thrive and care with compassion for those who require even greater attention – the millions living with dementia.
As most types of dementia progress (and brain cells die), people lose their ability to meaningfully express their needs and wants due to cognitive impairment. The lack of communication makes caregiving more difficult as caregivers try to meet their loved one’s needs.
Unlike assisting people living with cancer or those recovering from a heart attack, caregivers for people with dementia, particularly of the Alzheimer’s or Lewy body type, face unique challenges as the disease unfolds, and are often left guessing what loved ones need while assisting with the activities of daily living, such as eating, toileting and bathing.
Meanwhile, as care recipients’ needs go unfilled, and they are unable to express themselves clearly, their frustration mounts, which can trigger angry outbursts. This can leave them feeling fearful, longing to return to a place where things are familiar, safe and secure.
For these reasons, caregivers for people with dementia are subject to growing overwhelmed, stressedand isolated, as they try to attend to their loved one’s needs. Left unchecked, these feelings often spiral into depression.
That’s why it’s important to give caregivers tools to feel more in control of their lives. These two tips are a strong start to helping caregivers thrive.
Caregiver Tip #1
If you’ve taken on the role of caregiver, the first thing to do is learn as much you can about your loved one’s disease or illness to know what to expect. Otherwise, you’ll be driving blind.
Imagine getting in your car, turning on the ignition, closing your eyes and then driving. What do you think will happen? Before long, you’ll crash into something or someone, resulting in damage and even injuries.
The world’s roadways operate smoothly (most of the time) because drivers know what to expect and follow the rules. Likewise, caregivers who learn more about their care recipient’s disease will be more aware of the challenges that lie ahead.
They will be better at anticipating their loved one’s needs while understanding dementia-related behaviors that otherwise wouldn’t make sense. They will know which tools to draw on in different situations.
For example, witnessing a loved one conversing with a deceased family member spooks many unknowing caregivers; whereas, knowing that some people with dementia hallucinate helps caregivers divert what is unreal with a pleasant memory rather than correcting the loved one. “Dad, do you remember when Mom would spend hours in the kitchen preparing a nice picnic for us to enjoy on Sundays in the park?” Instead of “Dad, Mom died a dozen years ago.” The former approach invites shared memories of pleasant times without causing grief for the person with dementia.
Resources for caregivers
Today, there are many tools to help caregivers. In-person and online support groups are a critical first line of defense. They help raise awareness while giving caregivers a place to vent and feel community. Additional tools include adult day care, in-home care, residential care, assisted living and even skilled nursing care.
Types of dementia
Researchers have made progress delineating different types of dementia. Just a decade and a half ago, nearly every dementia-related symptom was diagnosed as Alzheimer’s. Today, medical professionals are able to diagnose the cause of dementia based on nuances in symptoms.
For example, about seven years ago, U.K.-based Norman (Norrms) Mc Namara, the inspiration behind The Purple Angel movement for dementia awareness, was diagnosed with dementia. Later, he was diagnosed with Alzheimer’s and prescribed medication. Except the Alzheimer’s medication proved almost fatal. He received yet another comprehensive evaluation, only to learn he had Lewy body dementia, which the program director of the U.S.-based Lewy Body Dementia Association once described as a disorder that "walks like Parkinson’s and talks like Alzheimer’s.”
Norrms, as he’s affectionately known (with two r’s), survived an initial misdiagnosis. This illustrates the need to know what disease a loved one has in order to ensure the person receives appropriate treatment. In Norrms’s case, his caregiver wife is more aware that his regular nightmares are a symptom associated with Lewy body dementia.
Caregiver Tip #2
After nearly two decades of serving family and professional caregivers for people with dementia, experience has taught me the second most important tip. This has helped give tens of thousands of caregivers the hope and strength to care with compassion:
"Care for your loved one the same way you would want to be cared for if you were living with the disease."
After learning as much as you can about, in this case, dementia, put yourself in your loved one’s shoes by asking yourself, “What fears and uncertainties would I feel in the face of this terminal diagnosis?”
When you personalize a dementia diagnosis, it becomes much more real. Imagine how you would feel if you were faced with the reality of losing nearly everything that makes life worth living. How would you find a sense of belonging after losing memories of childhood, family members' identities and adventures with friends? How would you feel if your busy, fast-paced life filled with looming deadlines and feelings of purpose were replaced by frustrating efforts to feed yourself?
“How fair is this? It’s not!” you might think.
Would you be bitter?
Finding compassion
Envisioning what it’s like to live with dementia helps fill you with compassion for your loved one’s loss, helping you push aside your exhaustion while giving you strength to continue caregiving.
Empowered by compassion, you'll be able to picture someone else caring for you the way you’d like to care for your loved one. This can make all the difference in the world, helping you survive, thrive and even find joy in caregiving.
Sign up here with your email
ConversionConversion EmoticonEmoticon