Caring for Someone With Dementia How Do They Feel?
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Years before, in the middle stages of his , it had devastated her when my stepfather would snap angrily at her without a reason. But this was worse for her. Now he was lost inside himself or had forgotten the words to express himself. He was a riddle, a mystery; someone who my mother felt helpless to decipher. Get instant access to members-only products and hundreds of discounts, a free second membership, and a subscription to AARP the Magazine. Psychologists have developed theories to explain how situations like this affect family caregivers. In her many books, author Pauline Boss, a leading family therapist, researcher and educator, coined the term “ambiguous loss” to describe the family members feel when a loved one is present in body but seemingly absent in mind, as with advanced dementia. Likewise, Joan Monin, Ph.D. and associate professor, Yale School of Public Health, and Richard Schulz, Ph.D., have written that, if relatives believe a loved one is suffering but can’t figure out its cause or how they can relieve that suffering, then those family members suffer in kind. These psychological insights can be summed up simply: We hurt when the people we love are disappearing beyond our reach and understanding. With its endless tasks and limitless sadness, dementia caregiving is hard enough. Caregivers don’t need to suffer more for their inability to read loved ones’ minds. How can they avoid the distress of feeling responsible for the people they care for without being sure about what they need or how to help them? Here are some ideas: of people with dementia to determine the most effective strategies for communicating with them. For instance, some individuals in the disease’s late stages may be unable to pay attention for more than a few seconds at a time. Getting the person’s attention first by gently saying his name or tapping him lightly on the shoulder and then using short, simple phrases would be the best way to successfully get across a message. Family Caregiving Savings on in-home caregiving services See more Family Caregiving offers > Or, for example, it is not unusual for those with dementia to slowly lose the ability to fully use and/or understand all the words they once knew. They may need the same meaning conveyed to them in multiple ways with different words and phrases to increase the likelihood that it will be understood. (“Bob and his family will be here soon. Our son is coming to see us. Soon, Bob, Jackie and our grandkids will have lunch with us.”) Many caregivers figure out and like this through trial-and-error over time. But it’s often helpful for them to step back and intentionally make an inventory of a loved one’s specific thinking skills — such as attention, concentration, language, reasoning, short- and long-term memory and the ability to initiate actions like rising from a chair — to more quickly develop communication strategies that are successful. AARP NEWSLETTERS %{ newsLetterPromoText }% %{ description }% Subscribe , these telltale signs persist even after the capacities for attention, language and reasoning have fallen away. Whenever my stepfather grimaced, my mother winced and knew he was in discomfort. She could then take her educated guess about what was troubling him — his old bum shoulder or a new bed sore on his bottom — and take whatever steps she could to provide relief. Likewise, it is physical cues that best convey meaning to an individual who no longer understands many words or is slow in initiating actions. My mother could say three times, “Please pick up your foot,” without being able to prompt my stepfather to place it on the wheelchair leg rest. But then she would tap his knee and he’d instantly move his leg.
Family Caregivers Wonder What Is My Loved One With Dementia Feeling
Employing strategies to help communicate may ease some worries
Getty Images “I wish I knew what was going on in his mind,” my mother would say about my stepfather. He’d be staring straight ahead, hands fidgeting on his wheelchair armrests, without a hint of facial expression. If he was hungry or bored or even in pain, she couldn’t tell. If she asked him directly what he was feeling, he’d just look at her blankly.Years before, in the middle stages of his , it had devastated her when my stepfather would snap angrily at her without a reason. But this was worse for her. Now he was lost inside himself or had forgotten the words to express himself. He was a riddle, a mystery; someone who my mother felt helpless to decipher. Get instant access to members-only products and hundreds of discounts, a free second membership, and a subscription to AARP the Magazine. Psychologists have developed theories to explain how situations like this affect family caregivers. In her many books, author Pauline Boss, a leading family therapist, researcher and educator, coined the term “ambiguous loss” to describe the family members feel when a loved one is present in body but seemingly absent in mind, as with advanced dementia. Likewise, Joan Monin, Ph.D. and associate professor, Yale School of Public Health, and Richard Schulz, Ph.D., have written that, if relatives believe a loved one is suffering but can’t figure out its cause or how they can relieve that suffering, then those family members suffer in kind. These psychological insights can be summed up simply: We hurt when the people we love are disappearing beyond our reach and understanding. With its endless tasks and limitless sadness, dementia caregiving is hard enough. Caregivers don’t need to suffer more for their inability to read loved ones’ minds. How can they avoid the distress of feeling responsible for the people they care for without being sure about what they need or how to help them? Here are some ideas: of people with dementia to determine the most effective strategies for communicating with them. For instance, some individuals in the disease’s late stages may be unable to pay attention for more than a few seconds at a time. Getting the person’s attention first by gently saying his name or tapping him lightly on the shoulder and then using short, simple phrases would be the best way to successfully get across a message. Family Caregiving Savings on in-home caregiving services See more Family Caregiving offers > Or, for example, it is not unusual for those with dementia to slowly lose the ability to fully use and/or understand all the words they once knew. They may need the same meaning conveyed to them in multiple ways with different words and phrases to increase the likelihood that it will be understood. (“Bob and his family will be here soon. Our son is coming to see us. Soon, Bob, Jackie and our grandkids will have lunch with us.”) Many caregivers figure out and like this through trial-and-error over time. But it’s often helpful for them to step back and intentionally make an inventory of a loved one’s specific thinking skills — such as attention, concentration, language, reasoning, short- and long-term memory and the ability to initiate actions like rising from a chair — to more quickly develop communication strategies that are successful. AARP NEWSLETTERS %{ newsLetterPromoText }% %{ description }% Subscribe , these telltale signs persist even after the capacities for attention, language and reasoning have fallen away. Whenever my stepfather grimaced, my mother winced and knew he was in discomfort. She could then take her educated guess about what was troubling him — his old bum shoulder or a new bed sore on his bottom — and take whatever steps she could to provide relief. Likewise, it is physical cues that best convey meaning to an individual who no longer understands many words or is slow in initiating actions. My mother could say three times, “Please pick up your foot,” without being able to prompt my stepfather to place it on the wheelchair leg rest. But then she would tap his knee and he’d instantly move his leg.