Whether you celebrate Christmas, Hanukkah or the Solstice, spending the winter holidays with a loved one who is dying feels poignant, fragile and precious.
The last Christmas I shared with my husband was probably the most beautiful ever - partly because of the thought we put into its planning and partly because we became willing to let go of the outcome once the planning was done. Here are a few of the things we learned:
1. Plan in advance but be flexible and hold your expectations lightly, remembering that there's a good chance that the plans will change.
2. Begin your planning with the person who is ill. Have a conversation about:
* his or her hopes and dreams for the holidays
* the themes that underlie those hopes and dreams - time with family, spiritual observances, gift giving, eating special foods, hearing traditional music
* what plans are realistic given their energy and abilities.
And don't forget to consider the same issues for yourself (and other family members living in the home) and share your thoughts with your loved one.
3. Have a conversation with extended family and friends once you know which activities matter most to you and your loved one and which will fit within your physical and emotional limits. Tell them about your limitations and about how you want/need to alter the celebrations this year. Make space to hear their responses with empathy and care. (Imposed change usually brings grief with all its sadness, anger, and efforts to control the uncontrollable.)
If the changes will be extensive, be sure to reassure people that they are still important to you and that it is the illness that is causing the constriction of activities and connection. For example, you might want to say something like:
* We'd love to have you here for the holiday meal but we don't have the energy to host it this year. If it's a particularly good day we might be able to join you for half an hour at someone else's house.
* We'd love to see you but we're moving into a time of quiet visits now. People who want to see Sam can come and sit with him for 5-10 minutes without speaking. On better days he may say something to someone but mostly its time for quiet visits now. If you're comfortable with that, you're welcome to come.
* We love you and wish we could see you but the time has come for us to protect our energy - the illness takes so much that the usual holiday visits aren't possible now.
4. Simplify rather than abandoning your traditions, for traditions are the glue that holds families together during hard times.
If your particular hopes and dreams are no longer possible, look at the important themes and values you identified in your initial conversations and use them as a guide for your new plans.
Going to the Midnight Service with family and friends on Christmas Eve and having our goddaughter and her family with us for Christmas dinner were the two traditions that were most important for my husband and me to maintain. Neither was possible in its usual form so we simplified and had a quiet, Christmas Eve service by candlelight at home in the livingroom on Christmas Eve and we all worked together to create a long, slow Christmas dinner on Christmas Day, so Derrick could go back to bed for a rest between each course.
It wasn't a perfect holiday but it turned out to be perfect in its imperfection, leaving us with cherished, loving, candlelit memories that will last forever. I hope the same will be true for all of you who face the end of life this year.
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