Holiday Stress and Dementia Caregiving
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The holidays are a time of connection and joy, but they also can be a time of stress. From logistics to unrealistic expectations and family dynamics, the holidays can be overwhelming. Stress is even more present for those balancing holiday planning and dementia care.

2020 has been a year of unprecedented events. The latent stress we are all holding right now will not let up because the calendar says it is a holiday. It is crucial to think ahead and plan for managing stress and dementia care over the holidays.

Stress is most destructive to our mental health when unexpected. Make a plan to reduce caregiver stress. You can balance dementia care, the holidays, and the day-to-day activities. This year, planning is more critical than ever. Travel restrictions and social distancing add new complications to holiday plans.

Here are ten tips to help you get you prepared to have a joyful and meaningful holiday season:

  1. No two days are the same.

Start each day with a blank slate. Expecting that today will be like yesterday sets you up for stress. Every case of dementia is as unique as the person living with it. Every day with that person is also unique.

What might work with one person one day may not work on another. Connie Hill-Johnson, a family caregiver and expert, cautions against comparing your holiday experience to anyone else’s.

  1. Practice gratitude.

There are great benefits of gratitude for seniors and caregivers. Focus on what you have, a colorful tree, or ornaments your children made decades ago. Do not dwell on what you lack, like the time to bake dozens of cookies, or the capacity to see every acquaintance, or the ability to follow a plan flawlessly. “Changing your focus allows you to bring in more abundance and decrease stress,” says Jaime Pfeffer, a wellness expert, and meditation teacher in Warren, Michigan.

Gratitude is a practice. We have to do it regularly to become skillful at it. It is not something we can do once. Gratefulness.org has resources to support you, including daily emails with words of the day, to help you stay in a grateful mindset.

3. Keep it simple.

“Change of familiar environment can be disruptive to the person with dementia,” says Steve, Barlam, a nationally known speaker in geriatric care management and a former Aging Life Care Association president. That includes accepting an invitation to host—or visit—an out-of-town family member or friends during the holidays.

“Sticking to familiar settings and small gatherings that adhere to the normal routine as much as possible can eliminate potential stress for both caregivers and the person living with dementia,” says Barlam. With a couple of technology tips for caregivers and seniors, setting up video chat is a great, easy way to keep connected with family and loved ones even if they are far away. Platforms such as Zoom or FaceTime allow you to go into other’s homes without having to leave the comfort of your own. With current social distancing measures, now is a great time to try these out.

Keeping it simple goes for décor, too. “Increased stimulation, lights, noises, activity, etc., can contribute to increased agitation,” adds Barlam.

You know yourself and your loved one best. The holidays are not a time to push them or yourself past your comfort zone. Focus on people, events, and decor that are meaningful and delightful, but not overwhelming.

  1. Maintain traditions when possible.

Whenever possible, stick to traditional and meaningful foods, decor, and music. “We had my mom sit at the table, even though we had to assist her sometimes,” shares Hill-Johnson. “We gave her gifts, even though she may not have known what the item was and included her in all of the pictures, even though it may have been difficult to get her to smile sometimes.”

While sticking to typical holiday routines, resist the urge to memory quiz. Steer clear of asking, “do you remember the Christmas we…” says Hill-Johnson. Doing so can make caregiving emotionally challenging when your loved one gets upset because they don’t remember.

Rather than you asking your loved one to remember, follow their lead. If they pick up an ornament and tell you a story about it, listen. The story may be one you remember, or one that is new, or one made up right now. Listen to the meaning behind the story; don’t worry about facts.

Give yourself permission to adapt, says Barlam. “Doing things like hosting family, cooking a large meal, buying gifts and other holiday tasks, in the grand old way you once did before caring for a person with dementia might not be realistic.”

Instead, he suggests delegating the preparation of some of the traditional dishes. Ask family members to come over and help. Family and friends can help decorate or sit with your mutual loved one while you deck the halls. “Create a potluck holiday meal instead of shouldering the entire shopping, food preparation, and clean-up yourself,” he adds.

  1. Prepare for the unexpected.

Because of the unpredictability of dementia, Barlam says it’s often easier for caregivers to isolate themselves. “It can be exhausting to be vigilant and have to explain/make excuses for the person with dementia.” He suggests pushing yourself to be with others. Have an alternate plan in mind to lessen frustration and disappointment.

Barlam suggests that, “When accepting an invitation or inviting someone over during the holidays, explain ‘I’d love to come to your home for a holiday party/have you for dinner, but if my loved one isn’t feeling well, can we instead have brunch the next day?’ Having an option helps you provide the best care for a parent or loved one with dementia while still maintaining your social connections.”

  1. Know expectations might go unmet.

Barlam urges not to “give in to unrealistic expectations that the holidays will be as they’re portrayed in television ads, movies, etc. Remind yourself to enjoy the happy moments your family shares, no matter what they look like and how they occur. Don’t get caught up in the minutia or a ‘keeping up with the Jones’ mentality.”

To manage expectations, he suggests asking yourself, “What would make my holiday a good one this year?” Then make a list of two to three simple things that would make you content and work on attaining just those things.

Be prepared to be disappointed. Barlam points out that, “family and friends may disappoint, even when they don’t intend to. Manage that added stress by communicating how you feel and what your expectations are for the holidays. Let others know what they can do to make a difference and help you care for a loved one with dementia.”

  1. Collaborate and make new memories.

Trying to make things like they used to be is often a losing and stressful battle. Focus on what is and what can be. Engage together in whatever way is most comfortable and fun. Connecting through art with your aging loved one over the holidays can be a fantastic way to engage, especially when a conversation is no longer accessible.

Try turning prep into a memory of doing something together. There are lots of possibilities.

  1. Plan in restoration.

Don’t overdo it. Make a practice of scheduling in recovery time. For each new thing, you add to the calendar, block off time to prep and recover from it. Having built-in rest and recovery time helps you and your loved one avoid caregiver burnout.

Plan in time apart. Being in a care partnership is a beautiful thing. And, sometimes, the best thing for the health of any relationship is a little time apart. Talk with family, friends, or outside support to make sure both of you get restoration time separate from each other as well.

  1. It’s okay not to be okay.

I am going to say it again because this is crucial. It is okay not to be okay. The holidays are hard. 2020 is hard. Dementia is hard. It is okay not to be okay. Tap into support and spaces where you can let yourself not be okay. Holding it together is one of the most stressful things we can do. Find local dementia support groups, attend a memory cafe, or rely on others in a similar situation to hold space for you not to be okay.

  1. Yes, and…

When it comes to the holidays, it is crucial to keep the end goal in mind. Is the end goal to have cookies that look perfect or to be together and make a new memory? Is the end goal to have the tree exactly how it has always been or to enjoy decorating it together? For most of us, the purpose of the holidays is to be together and connect. Use improv with dementia caregiving to help you roll with it when things do not go as planned. Keep the end goal in mind and have a less stressful and more meaningful holiday season.

Which of these seem like they would be the most helpful for you and your loved one?

Take a moment right now to think through incorporating some of these into your plans for the holidays. Yes, there may be stress, but with a little bit of planning and a lot of love, you can manage it.

Resources

Connecting through art over the holidays

Improv and dementia care

Gratefulness.org

About the Author(s)

Kyrié is a radically age and dementia positive coach and thinker. Her passion for story led her to a career in film, studies in Depth Psychology, and ultimately her work with aging. Kyrié calls herself a crone in-training because she believes our world needs elders and we need to train to become them. She is a book author and blog contributor for multiple platforms.

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