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.