When you are a caregiver for a family member with dementia, the holidays are a mixture of many things: practical organizing and preparations, as well as a jumble of feelings and emotions. It is not uncommon for family caregivers to feel overwhelmed, anxious, or sad, as they look forward to the days ahead. Old traditions may not feel the same. Holiday planning may feel like another chore to get done. We may be faced with the decisions regarding how to include our loved one with dementia in our holiday plans. While we attend to our day-to-day duties it is important to attend to ourselves. This can be annoying advice to hear – maybe you’ve been told this several times already by friends or family. But I think we need continual reminders to do so. Especially since the times we need self-care the most are also the times we find ourselves least able to step away, relax, and take a deep breath. Because the holidays evoke strong feelings and emotions we need reminders and encouragement that it is okay to embrace the days ahead in a manner that is in alignment with our true feelings, experiences, and needs. The following is a guide to the holidays for caregivers that focuses on self-care, as well as finding meaning in new routines adapted to meet the needs of a family member with dementia.
Be kind to yourself.
Don’t judge yourself or set expectations too high. It’s okay to amend holiday rituals or shift how celebrations take place with your family member with dementia. Be compassionate with yourself as you encounter anxiety or painful thoughts and feelings associated with disappointments, grief, or family disagreement. Self-compassion in caregiving is essential year-round and especially during emotionally-fraught holidays. Often caregivers experience feelings of loss with the holidays as it marks the changes in their family member with dementia and ways rituals are carried out. Let your holiday grief be what it is. Only do what you can manage and give yourself permission to be okay with that. In short, again, be kind to yourself. I believe it’s the single most important thing we can do for ourselves as caregivers.
Savor the moment.
If you keep yourself too busy during the holidays, you may leave no time to work on the critical need to allow yourself to be present with new rituals and family gatherings in whatever form that now takes. Don’t over schedule and don’t try to “keep busy” simply to avoid anxiety, pain, or preoccupation with making everything perfect for everyone else but yourself.
Also, one of the biggest lessons one can learn while being with our family member with dementia is to truly be present. Because the present is all we have with a person with memory loss – and actually, everyone in our lives – centering ourselves and truly being with our family members endows meaning and spirit to the role of caregiving. It can foster opportunities to learn a tremendous amount about ourselves, our preoccupations, expectations, and the changing relationships we have with the people we love. Concentrate on what is going on around you right now. Sit with your mother, father or partner, hold hands, and listen to an old holiday hymn or watch a holiday film together. Sing together. Read from a religious text or poem that highlights the holiday spirit or themes from the winter season. Ask your loved one with dementia what their holiday rituals were like when they were children. What food did they eat? Who did the cooking? What presents were received? Be mindful to be with the person in the moment while asking these questions. And avoid asking too many questions in rapid succession. The goal is to intend a connection, not merely retrieve information or test memory. Often, it’s not what we talk about; it’s the manner and spirit of how we interact with the person with dementia that makes all the difference. Be curious and engaged.
You can also look at familiar objects, together, such as an old ornament, menorah, or stockings. You can take time together to savor a favorite holiday treat. These moments offer opportunities for connection and demonstrate that important holiday rituals can still take place. It may be different but no less loving and meaningful.
Receive ongoing support from others.
When friends and family reach out to you during the holidays, accept their support. Let them spend time with you and take some of the responsibilities of preparing for the holidays or caregiving. Don’t feel ashamed by your dependence on others. Instead, revel in the knowledge that others care about you and want to help. If you do not have close friends or family members, write out a list of people or support communities that you can count on; neighbors, people at your place of worship, a caregiver support group or counselor. Seek out people who you can count on for practical assistance with holiday tasks or emotional support.
Let go of the need to stay strong during the holidays.
You do not have to plan a perfect holiday gathering or contain your sadness if you are mourning the loss of tradition or relationship as it had been before your loved one’s diagnosis or further decline. During the holidays it can be very important to express your feelings, happy and sad. Our society teaches us that emotional pain is to be avoided, not embraced. Yet it is only in moving toward our pain, discomfort, or grief and feeling our genuine emotions, that we can truly heal and be present in our lives.
Instead of cooking the entire holiday meal as maybe you’ve done in the past, have a potluck, have the meal catered, or order in. You don’t need to do all the holiday cooking or keep up with your 20 + guest list. Perhaps it makes sense to spread out holiday guests to just a few visiting at a time to reduce the impact of too much stimulation on the person with dementia.
Communicate your wishes.
Gather the strength and courage to tell the people in your life what your wishes are for the holidays. If you’d like their company but prefer to gather somewhere differently, say so. If you’d like to skip some celebrations, that’s okay. If you’re feeling ambivalent or unsure how to celebrate the holidays, tell them this too. If your family member with dementia has experienced considerable declines or an increase in distressed behavior feel free to communicate this. The more family and friends are able to understand your current situation and feelings, the more likely they may be able to offer support. Your friends and family want to help but may not be sure how they can. You can guide them by being direct. Call or send an email expressing how you would like to see the holiday plans unfold.
Plan for some alone time.
Even if it’s for only 15 minutes. Take a long walk, meditate, pray – do what ever helps to nurture your spirit. Especially if you are grieving the loss of old traditions, roles and relationships, take some time to mourn. Express feelings in a diary or light a candle to mark and honor the changes, gains, and losses in your life. They become the small rituals that nurture and heal.
Be still. Take time out of the holiday hustle and bustle and caregiving role for stillness. Again, even if that’s only for 10 minutes. Meditate. Allow your body and mind to be still. Concentrate on your breathing- in and out. When your mind begins to wander, return to here and now. If you need help, find a meditation audio recording and use it as a guide.
Focus on Relationships.
It might be helpful to instead of concentrating on everything that you have to do during the holidays, concentrate on for whom you are doing it for. Do you need to make 15 dozen cookies? Perhaps pare down to one special recipe or purchase a favorite pie at a local café. Similarly, do you need to buy piles of gifts for multiple family members? Ask yourself “Who do you care about and what would truly be meaningful to them?” Instead of going overboard with gift buying and decorating your home, top to bottom, make a meaningful toast. Prepare a few words before a holiday meal begins. Express your feelings and recollections about the last year. As a caregiver, you invest in and value the importance of relationships and family. Talk about this. Write thoughts down if it helps you feel more comfortable. These are the moments people remember.
Bottom line, focus on the people, not the production of it all. Focus on the relationship with your family member with dementia as it is now while mourning past relationships and roles. There is room for both.
Schedule something that gives you pleasure each day.
It’s hard to look forward to each day when you anticipate anxiety, stress, or feelings of loss with upcoming holidays. Counterbalance the demands of the holiday and caregiving by planning something you enjoy each day. It can be simple. Read, go for a walk, have lunch with a friend – whatever relaxes and brings you comfort and joy.
Don’t take hurtful advice or criticism to heart.
The holidays are a time of family gathering. This can also be a time when well-meaning but unhelpful friends or family members attempt to counsel us about our decisions and roles as caregivers. The effect can sometimes leave us feeling hurt, criticized, and unsupported. This can be additionally upsetting if you are dedicating your time, energy, and love to a family member in the best way you know how. Often people are uncomfortable with aging and dementia and offer advice or suggestions without recognizing the complexity inherent in our roles as caregivers making decisions. Guilt is already a common feeling caregivers struggle with. It can be additionally painful when a family member asks why, for instance, mom couldn’t attend the Christmas Eve present opening. Or alternatively, why you haven’t “just put mom in a nursing home.” Often the most sensitive and thoughtful caregivers are also those most impacted by hurtful suggestions and lack of understanding. Remember that you are doing your best and success cannot be measured based on perfection or lack of issues or problems. Find people who you can count on, who support you, and understand the challenges that arise.
Don’t cancel holiday traditions all together.
Traditions are important because they endure for generations, through good times and bad times. Adapt and alter holiday traditions as life changes instead of cutting them out entirely. Without these meaningful rituals the losses experienced due to dementia will feel even more severe. If your family member cannot attend a holiday event, have a small gathering at their long-term care facility. Rent a family room or simply sit next to them and hold their hand and sing a favorite holiday song. Find out the holiday event schedule at the care facility. You can recreate the essence of the holidays anywhere, at any capacity, when you engage whole-heartedly with the people you love.
Find your hope.
Caregivers can feel overwhelmed, anxious, and whipsawed by the uncertainties that chronic illness brings. This can lead to depression and, in some cases, despair and loss of hope. The holidays may magnify these feelings and if you find yourself in despair, fight to find your hope. Hope is an expectation of a good that is yet to be – that healing can occur, that generative purpose and meaning can be felt and carried out. Spend time in the company of people who truly listen and validate your feelings, happy and sad, and at the same time offer space for you to explore future possibilities and goals even if they can’t be pursued right at this moment.
If you are feeling despair, make a list of things you still look forward to in your life. Make a list of people who are present and who you care about. Make a list of everything that gives you joy. For some people spirituality is a source of meaning and hope, for others art, music, and literature can engage the complexities of life, including, joy, loss, and tragedy, as well as, resilience.
You may find that you are growing emotionally and/or spirituality as a result of your experience as a caregiver. What have you learned in your caregiving role and how has this provided strength or promoted wisdom or resilience? Has your vulnerability or the vulnerability of your family member made you more compassionate? Has it encouraged you to be more comfortable with uncertainty? These questions can function to help recognize how your role now impacts your life and offers growth – even if under the surface and not always recognized. This revelation from French writer Albert Camus offers insight, “In the depth of winter, I finally learned that there was in me an invisible summer.” Recognize your growth and ways painful times have impacted you in profound ways, times when on the surface there appeared no hope – just loss or sacrifice. I think we often perceive that dementia “robs a person” and leaves them “empty shells.” A caregiver once told me, “Alzheimer’s disease impacts the brain, not the heart.” Remember that. A person on the surface may appear to have lost so much but their essential humanness and need and ability to connect is still there in even the most advanced stages. There is hope in this understanding. Keep centering yourself, remain present, let go of expectations and see what happens. And again, the holidays remind us of the joy that can be found in the depths of a barren winter, a time of apparent deprivation. It teaches us to look under the surface and find the beauty that may be hidden but is profoundly still there. When we experience the holidays as an opportunity to take time out to nurture ourselves and engage the values we carry out everyday, it can do wonders to affirm our purpose and the skills, time and attention we give to others.
What you do truly is exceptional.