Caring For Someone With Alzheimer's During The Holidays: Seven TipsWhether your loved one is a parent, grandparent, other relative, or family friend, you're probably wondering what to expect during your time together. 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.
Here are seven things to keep 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,” 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. 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. 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 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. 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.
A family member with Alzheimer’s doesn’t prevent everyone from reverting to their old roles. So if your cousin has a tendency to ask inappropriate financial questions, she’ll probably continue to do so this year even if you expect her to be on her best behavior around Grandpa. If you know this going in, you’ll be much less frustrated when your family acts like, well, your family.
5. Be sensitive to the needs of the patient and the caregiver. If you don’t see your loved one and her caregiver on a regular basis, 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. 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. Don’t decorate with poinsettias since they are poisonous. 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. 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. 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.
7. And 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 (read: chaos). 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 Mass. 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. If you’re hosting and have formerly prided yourself on your Martha Stewart-esque abilities, let yourself off the hook. I can’t stress that enough! Things have changed, and you have to adapt. For example, maybe this year you buy pre-prepared food or turn the gathering into a potluck. 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. And remember, don’t push yourself too far or beat yourself up for not living up to “how things used to be.” If you remain positive and adaptable, I promise this season can still be full of celebrations to cherish.
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About the Author:
Nataly Rubinstein is a licensed clinical social worker and a certified geriatric care manager specializing in Alzheimer’s disease and other dementias. For sixteen years, she was the primary caregiver for her mother, who was diagnosed with dementia. Nataly also worked for several years at the Wien Center at Mount Sinai Medical Center in Miami Beach, Florida, which is ranked among the nation’s top hospitals for geriatric care by U.S. News & World Report. She is a consultant for numerous assisted living facilities and offers staff training and education on dementia. Nataly runs a private practice and provides counseling, educational programs, and support groups for people with dementia and their caregivers. She is currently working on her PhD.
Alzheimer’s Disease and Other Dementias: The Caregiver’s Complete Survival Guide (Two Harbors Press, 2011, ISBN: 978-1-9361981-3-9, $17.95) is available at bookstores nationwide, from major online booksellers, and at www.AlzheimersCareConsultants.com.