The one constant about life is that it is always changing. This dynamic is particularly acute around the holidays. USAgainstAlzheimer's recently asked some of our supporters, who are on the front lines and live this disease every day, for advice on how to tackle this challenging time and create new memories. Here's what they told us:
1. "Keep your expectations reasonable. Prepare for the worst and hope for the best. Holidays won't ever be the way they used to be and every year will be different. But that doesn't mean they have to be bad. Enjoy the great moments you can still have."
2. "It's great if your loved ones are able to communicate their needs to you. But make sure you create a comfortable and nurturing environment for them to be able to share those needs. Ask them direct questions so they have an opportunity to tell you what is best for them."
3. "It's important to have these conversations before the holidays so everyone is on the same page. Let everyone know that if dad gets overwhelmed, it's okay for him to go upstairs and rest in the bedroom. Make sure you notice if he's starting to look fatigued and bring him upstairs yourself."
3. "Denial is very common for someone facing Alzheimer's. Help that person save face - talk to them in private about how they'd like to handle holiday festivities."
4. "It is normal for a person with Alzheimer's not to cope well with crowds and noise. To accommodate this, changes have to be made. To make the patient more comfortable, consider including gatherings with only three to four people at a time. As wonderful as family gatherings are, they can be overwhelming, causing frustration for the person with Alzheimer's."
5. "Don't be disappointed if your loved one with Alzheimer's can't be with you the entire day. Make arrangements for him to be able to rest in his room or return to his facility once he's had enough."
6. "Don't put up the blinking lights or as many decorations this year."
7. "Let your loved one sit at the end of the table instead of the middle so she can better see who she's looking at and not have as much background noise."
8. "For those with grandchildren, try to make your home a happy place where they remember joy. Decorate the wheelchairs, get dressed up, play to the patient and make up new traditions."
9. "Sometimes those with Alzheimer's are grieving because each holiday can feel like last they will remember. Take holidays as an opportunity to enjoy the time, to be in the moment. Say the (nice) things to family members you've been meaning to say."
10. "The holidays will be different when you're caring for a loved one with Alzheimer's, but it doesn't mean it has to be difficult. Use your energy to make it a better experience for everyone involved rather than using your energy to fight against the changes."
11. "Make sure extended family and friends who might not have been around recently are prepared. They may expect to stay with the family, or expect that the person with AD will cook the meal."
12. "Sit by the tree, hold hands, sing old carols, enjoy a cup of hot chocolate."
13. "Our tradition was to have a big family gathering. But we talked as a family beforehand about how to make it feel warm for my grandmother and meaningful for her grandchildren. So we instituted something called "Grandma Duty." We all had an eye on her and when she felt overwhelmed, someone would spend a quiet moment with her. We created a huge family tree, and gave the grandchildren a name tag to place on the tree in relationship to our grandmother. It was a beautiful time, believe it or not."
14. "My husband was 48 when diagnosed. He was in a nursing home for his last year. My youngest was 11. I could not have my kids remember his last holidays like that. So I cooked a big meal and set up a little corner in the cafeteria and brought my husband down. My kids have fond memories of this -- some laughs even. This wasn't the usual big thing, but was very personal."
15. "My sister goes to see my mom the day before Thanksgiving, and then I go Thanksgiving Day. Smaller holidays work for her. We learned through trial and error and some difficult times."
16. "Not only will making needed adjustments leave everyone with happier memories, it will set a great example for all the kids involved in the festivities. It will teach them that families go with the flow and can be a place of joy no matter what."
Remember, you are still a family. New memories and traditions can still be wonderful. Happy Holidays from USAgainstAlzheimer's.
A special thanks to those who shared this advice and perspective on a recent conference call. To listen to the call in full, please click here.