With almost half of all individuals over the age of 85 suffering from Alzheimer's disease, it's likely that you'll be coming into contact with someone suffering from this or another dementia this holiday season. Whether your loved one is a relative or family friend, you're probably wondering what to expect -- and how to act -- during your time together.
The good news is you can take steps that create the best odds for an enjoyable experience. Here are six things to keep 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," it's completely normal for you to feel sad, confused, worried or even frustrated by the prospect of coming holiday gatherings. Acknowledge that you are losing the holiday experience as you've always known it, and that it's normal for your emotions to take a hit.
Manage your expectations. 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. 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. What if Mom dies on Christmas or during Hanukkah? This thought has probably occurred to you, even if you feel guilty and selfish for considering it. But the fact is, 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 who have probably been considering the same possibility.
Be sensitive to the needs of the patient and the caregiver. Before visiting or hosting, check with the caregiver to make sure that you understand how your loved one's needs have changed. 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. What's appropriate will vary from family to family, so stay in the loop with yours.
Arm yourself with knowledge and meet your loved one where he or she is. 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 different stages of the disease. 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.
• 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.
• When conversing, it's okay 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!"
• Especially as these diseases progress, patients feel uncomfortable and overwhelmed by crowds. 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. You might say, "I drove through Illinois on my way here to see you, and I know you grew up on a farm there. Will you tell me what it was like growing corn?"
• Dementia and Alzheimer's patients are known for being repetitive. 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.
• Your loved one 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 to help her interact and feel included, as well as make sure that she and others don't feel needlessly uncomfortable.
In the late stages:
• Alzheimer's and dementia patients might not be able to carry out a simple conversation, but 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!
And for caregivers: Let yourself off the hook! The holidays can be especially trying for primary caregivers. It's crucially important to make time for yourself in the midst of the holiday chaos. Start looking at your schedule, deciding what you want to do on your own and making plans now. Most importantly, manage your expectations and let yourself off the hook. 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.
Ultimately, 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, this season can still be full of celebrations to cherish.
Lee Woodruff: Who Will Care For The Caregiver?
Preventing Caregiver Burnout: Tips and Support for Family Caregivers
Caregiver stress: Tips for taking care of yourself - MayoClinic.com
Tips for Caregivers - Beliefnet.com
I'll point out that it also applies to families with a child with autism - except that lasts for oh, 70 - 85 years instead of 5, 10 or 20. And then YOU die and leave the loved one behind. A frightening prospect.
Having a parent die of anything during the holidays is very difficult, but I am so grateful that somehow Dad didn't go on Christmas Day. Even five years later, it makes Christmas more bittersweet, and inevitably, I find myself glancing up at the clock on December 26, exactly at 9:01. I really loved you, Dad.
That has never been easy for me.
My mother has been living with Alzheimers for 11 years, and one of the most difficult challenges for me is adapting, over and over again, to the changes taking place in her brain and her life. I keep thinking that I should have everything figured out, that I should be calm and zen and accepting. I've had so much experience with this, after all...
And then something changes. Either my mother's health takes a turn, or my reaction to her illness shifts. And then I have to start understanding the way I feel over and over again.
Sometimes I take a break from trying to understand how I feel. My meditation practice has helped me to sit still, feel what I'm feeling, and then let go. The holidays are presenting me with some challenges, however. Thank you for understanding.