Health / Fitness

Family caregivers face special challenges during holiday celebrations

Adapting traditions to fit the care receiver’s circumstances can help create new positive memories.

Family caregiving is a difficult job and it may become even harder when holidays, birthdays or anniversaries come around. Tending to a parent or spouse who requires constant care and who may no longer understand what is being celebrated can feel like the premature loss of a loved one, where their body is still present, but their mind and their memories are gone. 

“One of the many triggering things for caregivers dealing with dementia during the holidays is that so many memories and traditions can be wrapped in all of it,” said Health Projects Center clinical supervisor Jessica Mattila. “And if it doesn’t register anymore with someone very close to you, you can never escape the emotions.”

Family caregiver Sandra Collingwood spent seven years caring for her husband, David, after he underwent a triple bypass operation in 1997, had a massive stroke in 2004, and suffered from a series of medical problems that led to dementia.

“He was in a very bad way and needed a lot of care,” she said. “As for anniversaries, birthdays and holidays, it was not in his psyche anymore. He didn’t have it in him at all, and for his last years, he did not know when it was his birthday or our anniversary. But I knew it.”

Before her husband’s health problems, Collingwood said that she and David had a normal marriage and an active life. They enjoyed tennis, ballroom dancing, singing together and running a successful carpet cleaning company. But his sudden need for 24-hour care found her unprepared and constantly stressed until his death in 2021.

“I was not a person who was suited to this,” she said. “I did my best to read everything I could about being a good caregiver, but I didn’t find much that was sympathetically written. If you are dealing with things like incontinence and you have to handle wet diapers and things, you shouldn’t be reading a book that says, ‘well, we know that you have difficulties, but just suck it up and do it.’”

Her husband’s unrelenting round-the-clock needs left Collingwood exhausted and unable to afford professional caregivers; there was no escape from the routine.

“It changed my daily life where I could not get out anymore,” she said. “I didn’t feel cheated, but I was worn out and not sleeping some nights. There were times I just went into the closet, shut the door, and went into prayer. I don’t think I would have made it if it hadn’t been for that.”

One of the biggest changes in her routine was during holidays or other occasions when her husband’s condition made it impossible to travel to celebrate and spend time with their family.

Mattila said that it is important for the caregiver to give themselves permission to change traditions and do what works best for them and their loved ones.

“You don’t have to put yourself through the guilt trip and the stress of trying to make it like it was right,” she said. “You can never escape the emotions, but adaptation, flexibility and understanding will help you get through it.”

Christina Andrade, a family consultant at Health Projects Center, said it was important for caregivers to set new boundaries and understand what both the caregiver and care receiver are capable of during holidays and other special occasions.

“We need to remember to focus on what is meaningful,” she said. “Whether that is music or food or decorations. But you must also remember the tolerances of the person you are taking care of. You can’t just try to force reactions from someone because you want to have the traditional functions.”

People with dementia, for example, have a harder time processing aural or visual stimuli and can overload very easily when faced with groups of people.

“Sometimes loud music and the flashing lights on a Christmas tree can be very irritating to the person,” she said. “And if you are used to going to other people’s homes, it might be too stressful, especially if there is a lot of traveling involved. You might make arrangements to do video calls so you can see other people and participate in the event, so you do not feel isolated.”

Rather than trying to create an event around a holiday for the care receiver, Andrade said that a low-key approach is better and can be more satisfying.

“Try to reminisce,” she said. “Sometimes, just simply pulling out a photo album or pictures from the past and trying to have a conversation might get a reaction. Reminiscing about holidays in the past and who attended, the different foods and funny situations might bring some joy, stimulation, and recognition from the person you’re caring for. And then, hopefully, it will also bring you joy and create a positive memory.”

For Collingwood, that took the form of making a nice dinner for her husband on special occasions. 

“I always made a little fuss,” she said. “I always made sure he got a birthday card, for example. I think that’s the proper thing to do to keep things as normal for your loved one as possible. And I needed never to show resentment or any kind of negative feelings. I think I succeeded very well, though his energy level was much lower as he progressed, and he had less mental capacity to understand. But he had such a lovely personality, and we kind of took it in stride.”

Above all, Andrade said that caregivers needed to take the time to care for themselves.

“Just give yourself a little break,” she said. “Perhaps you can find an affordable caregiver to come in and give you a chance to go for a walk and look at the decorations or listen to music. And be aware of the stress indicators, like body aches, insufficient sleep, excess alcohol or over-the-counter pain medication consumption.”

It is also important, Andrade said, to be accepting when help is offered, and suggested a way of taking someone up on the offer.

“If someone asks if they can do something for you, give them two or three things and let them pick something they want to do,” she said. “Just hand it over to them. Be realistic about what you can and cannot do. You need to understand what is good for you, as well as what is good for the person you are caring for.”

Sometimes, talking may be enough to relieve some stress before a caregiver becomes overwhelmed. Andrade points to three important resources:

Families for Depression Awareness: Dedicated to serving the needs of caregivers, they provide education and training for caregivers through webinars, videos, panel discussions and publications, all of which are available on their website.

Alzheimer’s Association 24/7 Helpline: Available around the clock, 365 days a year, calling (800) 272-3900 gives access to specialists and clinicians for support and information. Live chat is available on their website.

Suicide Prevention: Studies indicate a high prevalence of suicide among caregivers, affecting one in 17 people who are caring for a dementia patient. Help is available by phone, by dialing 988, and online through the Suicide and Crisis Lifeline

“It is important to remember that life goes on, and you can deal with this,” Andrade said. “It will be a struggle and will test your patience. But these events will only last a day or two, and things will get back to normal, whatever that new normal is in your life.” 

 

 

BenitoLink thanks our underwriters,  Health Projects Center and Del Mar Caregivers  for helping expand our senior health coverage. Health Projects Center supports more reporting on senior health issues and solutions in San Benito County. All editorial decisions are made by BenitoLink.

Since 1988, Del Mar Caregiver Resource Center (CRC) has served families of persons living with neurological conditions such as Alzheimer’s Disease, Parkinson’s disease, Multiple Sclerosis, Stroke, Traumatic Brain Injury and other conditions that cause memory loss and confusion.

Robert Eliason

I got my start as a photographer when my dad stuck a camera in my hand on the evening of my First Grade Open House. He taught me to observe, empathize, then finally compose the shot.  The editors at BenitoLink first approached me as a photographer. They were the ones to encourage me to write stories about things that interest me, turning me into a reporter as well.  BenitoLink is a great creative family that cares deeply about the San Benito community and I have been pleased to be a part of it.