Caregiving during the holidays

Caregiving during the holidays is extra challenging for many reasons – it’s common to approach the holidays with dread and caution.

Holiday celebrations are intended to be happy and joyful, but if your world has been turned upside down by your role as a caregiver, it’s common to ask yourself:

“How can I celebrate the holidays with everything I’m dealing with?”

It’s normal for caregivers to deal with loads of extra responsibilities, physical challenges, financial struggles, and strong emotions (yours and those of your care recipient). Plus, if your loved one has a terminal condition, or their personality has changed due to brain disease, you may be experiencing ambiguous or anticipatory grief. 

It is confusing when you want to feel the holiday spirit, but what you feel most is exhaustion, sadness, and sometimes even resentment or depression. Especially if you are not getting adequate help or respite. When it seems everyone else is excited and busy preparing for a happy time, know your struggle is common: you are not alone. 

While it may be tempting to shut the world out, there are things you can do to honor your situation while staying connected to others you love during holidays and on special occasions. 

• Think about the activities of the occasion.
  What is the most meaningful to you? Are there aspects of the holidays you feel would be too much for you or your care recipient that you need to change or skip? For example, decorating the house (both inside and out), attending special religious services, baking or preparing seasonal dishes. How can you communicate your love to family members with less time and/or energy this year?

• It’s okay to say no.
  Holiday traditions are meant to serve people, not the other way around. Do not be afraid to change what is no longer comfortable or convenient. Do not allow well-meaning friends and relatives to pressure to maintain traditions or attend parties/events/services. Give yourself permission to do only what you can reasonably manage. If you’ve always invited 15 to 20 people to your home, consider inviting five for a simpler meal. Think about having a potluck dinner, asking someone to order and bring dinner, or asking others to host.

• Discuss, in advance, how you to include your care recipient.
  If the person you care for has a compromised immune system, is suffering from a memory disorder that results in inappropriate speech or behavior, or simply tires easily, it’s important to share this information with visitors in advance. By managing their expectations and setting clear boundaries, you will reduce stress for you, your care recipient, and your visitors. 

• Discuss, in advance, how things will be different.
  For example, if in the past you cooked a large turkey dinner with all the fixings, let your family know what you will do differently this year. If in the past, you gave family members handmade gifts, but this year you don’t have time, let them know. There is no need to apologize or feel guilty – circumstances have simply changed, and you are adapting to “the new normal”. 

• Talk with your family members.
  Share your thoughts and ideas with those who love you and ask for their support and understanding. Collaborate on ways to most meaningfully celebrate with all your shared resources. The holidays are also a good time to ask for help. 

• Keep to your care recipient’s schedule.
  Your priority remains caregiving. Keep a predictable routine for bedtime, waking, meals and activities for your care recipient. Share your schedule with visitors, in advance, so they will know when you and your care recipient are unavailable; especially if the person you care for has dementia and experiences “sundowning” in the late afternoons or evenings.

• Take care of yourself.
   When you get enough sleep, eat well-balanced meals, and don’t overextend yourself, you will be in the best position to enjoy special days with family and other visitors.

• Accept the pain and conflict you feel as normal.
  Realize it’s normal for your energy and internal resources to not be functioning at your usual strength. Consider where you want to give your focus this holiday season and set aside guilt for doing things differently because of your extraordinary circumstances.

• Stay close to your journal.
  Remember to stay in touch with yourself, how you are feeling, and regularly and write about what you are experiencing. Make note of what is helpful and what is meaningful to you. This emotional cleansing will impact your perspective and most likely allow you to be more open to others you love. If not today, then maybe tomorrow.

Tips for Adjusting Expectations

• Call a meeting or arrange for a group discussion via telephone or video chat for family and friends to discuss holiday celebrations. Make sure everyone understands your caregiving situation and has realistic expectations about what you can and cannot do. No one should expect you to maintain every holiday tradition or event.
• Write a letter or email. Familiarize others with your situation by writing a letter or email similar to the following:

I’m writing to let you know how things are going at our house. We’re looking forward to your visit, and we thought it might be helpful for you to understand our current situation before you arrive.

You may notice ___ has changed since you last saw him/her. Among the changes you may notice are ___. I’ve enclosed a picture so you know how ___ looks now. Because ___ sometimes has problems remembering and thinking clearly, his/her behavior is a little unpredictable.

Please understand that ___ may not remember who you are and may confuse you with someone else. Please don’t feel offended by this. He/she appreciates your being with us, and so do we.

Please treat ___ as you would any person. A warm smile and a gentle touch on ___’s shoulder or hand will be appreciated more than you know.

We do ask you call when you’re nearby so we can prepare for your arrival. With your help and support, we can create a holiday memory we’ll all treasure.

Remember, there is no right or wrong way to celebrate the holidays. Maintaining the health and well-being of both you and your care recipient is far more important this year. Be gentle with yourself, and your loved ones, and take time to set expectations in advance.

Sources: Linda White, Chaplain & Hospice counselor. Jeff Nash, MDiv, BCC. Paula Hill, staff writer for Family Caregivers Online. The Alzheimer’s Association – Guide to the Holidays.

We hope this information is helpful to you in the important work you do as a family caregiver.
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