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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 will come into contact with someone suffering from Alzheimer's or other 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. Nataly Rubinstein MSW., LCSW, C-ASWCM, a licensed clinical social worker and certified geriatric care manager, says 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. "The key to best managing your holiday experience is to educate yourself as to what you should expect and to regulate your expectations accordingly."
As an Alzheimer's coach—a mix between a psychotherapist and a consultant—Rubenstein regularly works with families to form the strategic plans and coping skills needed to improve their quality of life while caring for a family member with dementia. Besides her professional work in dementia care, she served as a primary caregiver for 16 years after her mother was diagnosed with dementia.
Here are seven things Rubinstein suggests keeping in mind if you'll be visiting someone with Alzheimer's or dementia in the coming weeks:
1. 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 frustrated by the upcoming 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."
2. 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."
3. 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 snow globes. 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."
4. Don't expect family dynamics to change. Consider this scenario: Grandpa has been diagnosed with dementia, and he wasn't in the best of health to begin with. Realistically, this might be his last holiday, and everyone knows it. So of course your brother will tone down the passive-aggressive jabs, and Mom will refrain from openly criticizing your decisions so that everyone can enjoy this time as much as possible…right? Unfortunately, that's highly unlikely.
5. Be sensitive to the needs of the patient and the caregiver. If you don't see your loved one and her caregiver regularly, you might not be aware of just how much their daily lives and needs have changed. Before visiting or hosting, check with the caregiver to make sure that you understand the "new normal." For instance, maybe you've always brought a bottle of wine to the big holiday get-together for toasts. But this year, sparkling grape juice might be better since it won't interact adversely with Aunt Penny's Alzheimer's medications.
"Take extra care to think through how you do things and make decisions based on reality," Rubinstein advises. "For example, if you have small children whose exuberance might overwhelm Grandpa, talk to them beforehand about how to behave. If you have a cold, reschedule your visit so that he won't catch it. And realize that this year, maybe your visit should end after two hours instead of eight. What's appropriate will vary from family to family, so stay in the loop with yours."
6. For caregivers: Let yourself off the hook! The holidays can be especially trying for primary caregivers. After all, you're responsible not only for yourself but for your loved one every day. It's crucially important for you to make time for yourself in the midst of the holiday bustle. Start looking at your schedule, deciding what you want to do on your own and making plans now because holiday schedules fill up fast. If you want to renew spiritually, for example, arrange for someone to watch Mom while you go to temple or church. The same thing applies if you need to do some holiday shopping or attend your spouse's company party.
"Most importantly, caregivers, manage your expectations," Rubinstein adds. "Overall, think about the time together and not the meal, décor and trimmings. When you know what to realistically expect, the time you spend with your loved ones this holiday season will be greatly enhanced."
7. Arm yourself with knowledge and meet your loved one where he or she is. "If you are unfamiliar with Alzheimer's or dementia, you might be reluctant to interact with your loved one," Rubinstein says. "That's normal. Most people who aren't the primary caregiver are unsure of what Mom is capable of doing, how to approach her, how to make her feel comfortable, etc. That's why it's a good idea to have a basic understanding of how patients at different stages of the diseases will be able to handle different levels of interaction and activity. Everyone is best served when you meet Mom where she is instead of walking on eggshells or trying to force a conversation that's no longer possible."
Here are some basics to keep in mind:
In the early stages:
- Don't be afraid of Uncle Joe because he has been diagnosed with Alzheimer's. He has a disease, but he is still the same person. Be yourself around him. If he has always complimented your smile or your sense of humor, display those things!
- Don't wait for Grandpa to feel comfortable enough to join the conversation or activity on his own. Make a point to include him. Ask, "Grandpa, I know that you love your keepsake ornaments. Would you like to help me hang some of them on the tree?"
- Ask specific yes and no questions—they will be easier for your loved one to understand and answer.
- These are diseases of forgetting, and memory loss will include words and—eventually—the fundamentals of communicating. When conversing, it's OK to offer a word or phrase that Mom seems to be searching for—as long as you do so kindly.
In the moderate stages:
- Eventually, many dementia and Alzheimer's patients have trouble remembering names. Even if you're close, it's a good idea to start conversations with an introduction such as, "Hi, Dad! It's your oldest son, Nathan. It's so good to see you!" If you have to reintroduce yourself mid-conversation, try to work your name in without embarrassing the patient; e.g., "My friends are always telling me, 'Nathan, you are the funniest guy at work!"
- Patients often feel anxious or on edge because they're confused about whom they're with, what's going on or where they are. It's best not to startle them unnecessarily so approach them from the front and make sure you don't initiate physical contact until your loved one knows you're there.
- Especially as these diseases progress, patients feel uncomfortable and overwhelmed by crowds. Remember that one-on-one conversations in areas without distracting movement or sound will be most effective.
- If you're having trouble talking to Grandpa, keep in mind that he is likely to remember older memories as opposed to newer ones. Remind him of those things.
- Dementia and Alzheimer's patients are known for being repetitive. (Partially, that's because telling a familiar story is comforting to them.) It's natural to feel somewhat bored or annoyed when Aunt Sue tells the same story five times in a row, but remind yourself that this repetition makes her happy—and it doesn't hurt you. Be patient. If possible, you can steer the conversation to another topic by saying, "That reminds me…"
- Your loved one might not remember your name or all of the memories you once made together, but he will still appreciate hearing sincere compliments about himself. Even if a behavior is unnecessary, you can still say, "Thanks for checking the locks—it makes me feel good to know that you're helping to keep us safe."
- If there's going to be a large crowd of people at an event, ask someone capable to stay near Mom at all times. This person can help her interact and feel included, as well as make sure that she and others don't feel needlessly uncomfortable. Remember, if interactions become too stressful, take Mom back to her room.
In the late stages:
- In the late stages of the diseases, Alzheimer's and dementia patients might not be able to carry on a simple conversation. If that's the case, just sit near your loved one. A hug or a squeeze of the hand can still be meaningful and comforting.
- Long after many memories, skills and abilities are gone, patients can still appreciate (and often respond favorably to) music. Play favorite holiday songs for your loved one and sing along!