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Tuesday, December 06, 2011
Caring and Caregiving through the Holidays
From the Paramus Post:
If you have a loved one with Alzheimer’s or dementia, your instinct might be to cling to beloved traditions this holiday season. But according to Nataly Rubinstein, you—and your loved one—might experience the most holiday joy by adapting your plans and expectations. According to the Alzheimer’s Association, one in eight people over the age of 65 suffered from Alzheimer’s disease in 2011, with that statistic rising to almost half of individuals over age 85 (that’s 5.4 million Americans overall). With those disturbing odds, it’s likely that you’ll be coming into contact with someone suffering from Alzheimer’s or another dementia this holiday season.
Whether your loved one is a parent, grandparent, other relative, or family friend, you’re probably wondering what to expect during your time together. According to Nataly Rubinstein, the presence of Alzheimer’s or dementia will change the way the holidays “have always been,” but you can take concrete steps that create the best odds for an enjoyable experience.
“When someone you know and love is diagnosed with one of these diseases, the ‘new normal’ can be difficult to understand, accept, and deal with, especially around the holidays,” says Rubinstein, author of Alzheimer’s Disease and Other Dementias: The Caregiver’s Complete Survival Guide (Two Harbors Press, 2011, ISBN: 978-1-9361981-3-9, $17.95). “The key to best managing your holiday experience is to educate yourself as to what you should expect and to regulate your expectations accordingly.”
Here are seven things Rubinstein suggests keeping in mind if you’ll be visiting someone with Alzheimer’s or dementia in the coming weeks:
Understand why you feel the way you do. There’s nothing joyous or merry about the fact that someone you love has a degenerative and ultimately fatal disease. So even though this is supposed to be “the most wonderful time of the year,” according to Rubinstein, it’s completely normal for you to feel sad, confused, worried, or even frustrated by the prospect of coming holiday gatherings.
“Especially if the diagnosis is fairly recent, family members and friends tend to feel some mixture of fear and dread as the season of celebration approaches,” she shares. “That’s because we know on some level that things have changed forever. We are losing the holiday experience and beloved traditions as we’ve always known them, so of course our emotions are going to take a hit. It’s very important to admit and articulate to yourself—as well as other family members—why you’re feeling uncharacteristically stressed and upset.”
Manage your expectations. We live in a society that’s inundated by Hallmark holiday images: families gathered happily around the menorah or Christmas tree, laughing around the dinner table, or singing favorite holiday songs. Even if you’ve somehow managed to achieve this type of complete holiday bliss in the past (which is unlikely), you need to know that this year will not be the same.
“Don’t set yourself up for disappointment by dwelling on the past,” Rubinstein advises. “Even if you have spoken to Dad recently and he sounds good, realize that celebrating with him will not be like old times. Alzheimer’s and dementia will dramatically and permanently change aspects of your father and his behavior. So trying to force him—and your family as a whole—into a pre-disease holiday template is like trying to fit the proverbial square peg into a round hole. While it might sound Scrooge-like, it’s wise to hope for the best while preparing yourself for the worst.”
Acknowledge the elephant in the room. For all families with a loved one suffering from Alzheimer’s or dementia (especially if that person is nearing or in the late stages of the disease), there is an 800-pound elephant standing in the middle of the room, right next to the stockings, garland, and snowglobes. What if Mom dies on Christmas or during Hanukkah? That’s the worst thing that could possibly happen—it would absolutely ruin this year, and it would attach bad memories to the holidays for the rest of our lives.
“I don’t doubt that the thought has occurred to you, and I bet that you feel guilty and selfish for considering it,” Rubinstein says. “You’re probably reluctant to express this worry to your family members for fear of being perceived as depressing or morbid. But the fact is, you have to deal with reality—a death on Christmas could happen. You don’t need to insert this dreadful ‘what-if’ into every conversation, but it might be helpful to discuss it with a few close loved ones. You might be surprised when they admit that they’ve been considering the same possibility.”
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