The holiday season is a time to get together with friends and families and to share memories, gossip and a laugh or two. However, when a loved is living with ALS the holidays can be a precious yet painful time of year.
“The holidays can be a very emotional time. The disease might have robbed people of their vitality; they might not be able to dance, sing. They might not be able to enjoy their favourite holiday foods. They might even have trouble speaking, breathing,” says Yves Lafleur, a psychosocial counselor with the ALS Society of Quebec. “But despite the limitations and challenges, it is important to celebrate the holidays surrounded by the people you love.”
Yves reminds people to keep it simple. “It doesn’t have to be a big blowout. Maybe people can stop by for just 30 minutes. It is important not to give up because there are still stories to share, memories to enjoy and hugs and kisses to exchange.” Yves urges people to adjust their holiday traditions, or create new ones that better fit with their health and physical abilities.
When ALS forced Daniel Robitaille into a wheelchair, his family broke with tradition. For generations, the family flocked to its ancestral home in Lac St-Jean, but it was not wheelchair accessible. So, they moved the party. Now they congregate at the home of Daniel and his wife Christiane Bouchard. They regularly welcome 20 to 25 people on Christmas day.
“We share memories, listen to music, share a laugh, have a drink, catch up on the news and retell old stories,” says Christiane. “It is very joyous and precious to us.”
Christiane says people are very considerate they bring all of the food and drink sparing her most of the work. They double check about the best time to arrive. She says they understand her husband, who has been living with ALS for seven years, tires easily and might even have to leave the room for a bit if it gets too noisy.
“For my husband and me, family and friends are essential. They are a huge support,” says Christiane. “It is comforting to know they are ready to help. Plus, they understand what we are living is not just physical but also very emotional.”
Recently some of her husband’s old business colleagues visited bringing sushi. “It was a boy’s only afternoon. I quietly left the house leaving them alone. They chatted and gossiped. They caught up for a couple of hours. My husband had a good time. It wasn’t sad. It was fun.”
Daniel wholeheartedly agrees saying living with ALS can be very isolating particularly during the winter when the snow and cold forces him indoors. He notes the short days can be gloomy and a bit depressing. “It helps to see family and friends. They bring me energy and help me stay connected to the world,” he says.
Daniel acknowledges when he was first diagnosed with ALS he and his wife lost some close friends. Not able to deal with his debilitating disease, they became distant. Yet, others who were mere acquaintances stepped up and became fast friends. He understands some people can’t handle being around someone whose health is failing. He speculates it makes them think of their mortality.
“When you have ALS, you have a lot of time to think, you become more reflective. Visits from friends and family are more meaningful; more emotional,” says Daniel. “If you have a friend with ALS or any other disease, and if you are hesitating, wondering if you should visit or not or if you are uncomfortable being around someone who is sick and infirm, steel yourself and visit. Don’t be afraid. Your visit counts. It is important and it is very much appreciated.”
Tips for friends and family
Before you visit, Daniel Robitaille, his wife Christiane Bouchard and Yves Lafleur of the ALS Society of Quebec offer these tips:
- Don’t just drop in. Call first to see if the person living with ALS and their caregiver are up for a visit. Some days are better than others.
- Find out the best time to visit. It takes Daniel a lot longer than most to do everyday tasks. For example, it takes him a minimum of 1.5 hours to get up and dressed each morning. As well, there are times of the day when he has more energy. Plus if he knows someone will drop by in the early evening he’ll take a nap in the afternoon so he will be alert.
- Don’t overstay your welcome. People living with ALS tire very easily. When visiting take your cue from the person living with the disease. If they start showing signs of fatigue, take your leave. You might think a visit of 15 minutes is useless or too much effort to bother, but for the person with ALS, it is priceless.
- Bring food and drink. Taking care of someone with ALS is a fulltime job. The caregiver likely doesn’t have the time or energy to shop for food and to cook a meal. Caregivers would really appreciate if you took care of everything. This gives them a break and an opportunity to really enjoy their time with you.
- Don’t expect the house to be spic and span. When you are focused on taking care of a loved one 24-7, housekeeping takes a backseat. Visitors should look the other way if they see clutter. Better still if you think the caregiver would appreciate it and won’t be insulted, offer to help tidy up.
- They need time off. Sometimes caregivers need a little break but they don’t want to leave their loved one alone. Offer to give them a little respite. It would be very much appreciated.
- Can’t be there in person? Even if you live far away from a friend or family member with ALS, stay in touch by phone, email or Skype. You’ll never realize how much they appreciate that you reach our on a regular basis.
- Listen. The best communicator is someone who listens, really listens. Sometimes people living with ALS just want to talk about their fears, their concerns. They know you don’t have the answers. They just need someone to listen.
- Be there, really be in the moment. Leave your worries, concerns and to do list at the door so you can fully enjoy the visit with an open heart. Remember, you are sharing a few precious moments in time that are fleeting.