Supporting Caregivers During the Holidays

’Tis the season of family gatherings. Most of us are busy with additional activities and responsibilities during the holidays. But it’s not the same when you’re caring for a loved one with dementia, cancer, or another serious illness. Caregivers have more than popcorn balls and jingle bells to juggle.

Seasonal concerns to address

Social worker Peter Silin, MSW, shares a few common questions caregivers ask during the holiday season:

• Is my loved one well enough to participate in family gatherings?
• Would it be too overwhelming?
• How will he or she react? If the care receiver has dementia, he or she may not do well with large groups of people.

Also, if the care receiver lives in a facility, there are questions about

• when to go visit
• what activities to do with him or her
• how to cope with possible emotional upsets due to the holidays

Thoughts may revolve around losses

Many caregivers say the holiday season magnifies what they no longer have. Ellen Nielsen took care of her parents, both diagnosed with dementia, in Edmonton.

She says, “The holidays are particularly painful because that’s when you would have done things together that you can no longer do. Normally, you’d go shopping, to parties and concerts, to church, to family gatherings. Often caregivers can’t do that because of their responsibilities. So, they either feel pressure to somehow still fit these things in or feel even more isolated than usual.”

When you’re a caregiver, it can feel as though everyone else is having fun with family and friends. You have such a large burden; even the simplest activities feel impossible. The grief can be enormous, Nielsen says.

These tips for spreading comfort and joy will help you anticipate needs and help support the caregivers in your life.

1. Allow space for grieving

Barbara Small works with the Family Caregivers’ Network Society in Victoria. She encourages us to remember that not everyone will have a happy family gathering just because it’s the holidays. “Old resentments can resurface when people spend an extended period of time together,” she says. “Grief can be stronger during the holidays—especially when the stress of caregiving is added to the mix.”

Feelings of grief and loss can be triggered because caregivers remember who their loved ones were and what the holidays were like before the illness. Also, Silin adds, “Caregivers might feel guilty about having placed loved ones in a care home, or about deciding not to include them in larger family gatherings.”

Let caregivers talk about their losses and feelings—even when it makes you feel uncomfortable. It’s okay not to know how to respond. You might say, “I am so sorry for your loss. I’m here to listen. Would you like to talk about how you’re doing now, or your memories of past holidays?”

2. Have a family meeting

Silin says family members can help caregivers by initiating a short family meeting or even a couple of phone calls. “Discuss what practical tasks need to be taken care of, and what you can do to help,” he says. “Maybe someone else can make or host the holiday dinner, go shopping, or visit loved ones in a facility.”

3. Offer to cover responsibilities

Disruption of paid or volunteer services can be a huge problem during the holiday season, which makes sharing caregiving tasks especially important. Sylvia Baago is the Founding Chair of the Young Carers Initiative in St. Catharines, Ontario.

She says, “Many service and/or support agencies may close down entirely during Christmas week to accommodate staff who want to spend the holidays with their own families. If they do stay open, agencies often have to find replacement staff to fill in the gaps. This means caregivers and care recipients have to adjust to new faces in their homes.”

Different faces and schedules can be especially disruptive for care receivers who have cognitive difficulties. Baago’s husband, for example, suffered a catastrophic brain injury in a car accident and needed round-the-clock care. It took time for him to form relationships with his therapists.

“When replacement workers were sent during the holidays, often my husband would refuse to go,” she says. “It was a very stressful situation for all parties concerned. As a caregiver, I needed the respite this service provided, so I could catch up with my chores, run errands, and just have time for me.”

Care receivers may feel happy and comforted to see family during the holidays, when their normal routine is disrupted. Even if they don’t recognize loved ones (as may happen with people with dementia), most still enjoy visitors.

4. Go shopping at home

It’s time to talk about the presents! Nielsen has a great shopping idea for care receivers who aren’t comfortable in or can’t go to stores or malls: “Bring an assortment of small gifts to their home, and let them ‘go shopping’ for gifts to give to grandchildren or other loved ones. Take time to wrap each gift with them, and prepare a holiday card.”

If the caregiver needs to spend this time taking care of other things, this could be a light, fun way for people who don’t often visit to spend time with a care receiver.

5. Give the gifts of the season

Nielsen shared several other ways to enjoy the spirit of the holidays, such as bringing a few people over to sing carols and savour hot chocolate or other seasonal goodies. “Don’t stay too long, though,” she says. “Twenty or 30 minutes is enough.”

Or send a hairdresser over so both caregiver and care receiver can enjoy a stylish new “do” for the holidays. You might also bring or decorate a tree—or put up the lights—for caregivers who may not have the time or energy to do it themselves.

Transportation to and from events is also a huge help. Sixty-one-year-old Valerie Grant has adult mitochondrial myopathy, and takes care of her 88-year-old mother in London, Ontario. Grant says, “There is usually a lot of ‘stuff’ to bring to holiday gatherings, such as a walker or a cane, medications, gifts, potluck dishes. Having someone help transport us and all of this to and from the party is extremely helpful.” She adds that getting help with the holiday cooking and baking makes a big difference, too.

6. Let go of what “should” happen

“Take time to re-evaluate your expectations for the season and create a more realistic view of the holidays,” says Small. “What do caregivers have time and energy to do? What can they delegate to others? Are they doing something out of habit or because they really want to? What are the most important activities, and how might they most easily be achieved?”

The holiday season isn’t just about parties, presents, and plum puddings. It’s about connecting with loved ones, dipping into one another’s lives, and walking together toward whatever the New Year brings—both bitter and sweet.

Resources for caregivers

We found many wonderful resources for caregivers, but only have space to list a few here.

• ALS Society of Canada - als.ca
• Alzheimer Society of Canada  - alzheimer.ca
• Canadian Caregiver Coalition - ccc-ccan.ca
• Canadian Hospice Palliative Care Association - chpca.net
• Canadian Home Care Association - cdnhomecare.ca
• caregiver-connect.ca  - caregiver-connect.ca
• Family Caregiver Alliance - caregiver.org
• Long Term Care Planning Network - ltcplanningnetwork.com
• Young Carers of Canada - youngcarers.ca