During National Family Caregivers Month, we frequently hear about ways to manage caregiver stress, caregiver burnout and caregiver blues. Having cared for both of his parents at the same time, Luc Roberge’s experiences touch upon all of the above. But perhaps the most overlooked discoveries of caregiving are said so often it loses meaning. But Luc’s experiences seem to bring those concepts into perspective.
Six years ago, Luc’s mother suffered a stroke that caused dementia. She was a creative personality who loved music and artwork. So over the years, she created beautiful ceramic art pieces, decorations, and statuettes. Her small animal figurines rested outside on the back deck of Luc’s home. Sometimes she would sit inside the house and look out the glass door to admire them. “It’s nice to see,” Luc observed. “She doesn’t remember that she painted these things, but yet she looks at them and she still enjoys it without even realizing that she’s the one who created them.”
These moments are the most enjoyable for Luc. “You can still have emotional highs,” he explained. It was sometimes easy to get caught up in realizing that things are never going to be the same. But the emotional highs came when enjoying his loved ones’ presence – while in their current state.
“With my dad, his birthday was March 3rd, and we took him out [last year].” Luc’s father suffered from Alzheimer’s, diagnosed 10 years before Luc’s mother had a stroke. “We all took my parents out to dinner to celebrate my dad’s birthday, and I’m so pleased and happy that we did that because two days later, he all of a sudden passed away.
Before his father’s death, Luc spent time navigating a world in which he had to take care of both parents. Luc’s mother had been the family caregiver for so long, so the role reversal was a challenging one. “It takes some getting used to, I think, for anybody who’s a caregiver to realize that yes, they might be your parent, but you have to step out of the son or daughter role and be the caregiver, primarily to do what’s right for them.”
Doing what’s right sometimes involves resolving disagreements within the family. Luc’s brother moved in with the parents to help Luc care for them. When their father died, the brother suggested bringing in someone to watch over their mother at night to give them both time out of the house.
“As difficult and sometimes impossible as it could be, you have to step back and think ‘is it the best decision you can make for that individual?’” Luc explained. “Financially, [it was] just not feasible…and I’m home every night. So, being the power of attorney, I overrode my brother and said ‘no we’re not going to go down that road. We’re going to have her move in with me.’... I discovered that my situation is not very unique. [There are] a number of people who are or were in a similar situation where there’s a sibling that doesn’t want to or isn’t willing or isn’t able to change their life.”
Still, with his mother living in his home, Luc had to face changing his life around yet again. It made him realize that very few things in life are constant. “In my case, [life] changed immensely because I was a very busy person. I had a number of different part time jobs as well as my full time job. So I had many responsibilities at different venues and that had to change in order for me to assist my parent…Life can change very drastically, very suddenly.”
Fortunately, Luc had a very supportive circle of friends who would watch over his parents so he could have space for himself. He also reached out to Easterseals in New Hampshire to help provide 24-hour care, and to give his mom and dad a safe environment while he was at work. When his parents attended the adult day services program at Easterseals, Luc liked that his parents were together. Although, he noticed some interesting results of having them together all day too, like how they sometimes mirrored each other's opinions and feelings. This took some creative caregiving!
“There were many times where they would play off of each other: ‘Oh, I’m not feeling well. Oh, I don’t want to go out.’ … So I had to get a little bit unique on how I was going to get them out of the house and to Easterseals. I’d say ‘oh, let’s go to breakfast; there’s a new breakfast place in town’ and I’d drop them off at Easterseals after that, and they were fine. It was interesting, my dad would say ‘oh, your mom’s not feeling well’ and then I’d talk to her and she’d say ‘oh, I’m fine!’” Luc figured out how to navigate it all.
Although Luc’s father was diagnosed with Alzheimer’s long before his mother had a stroke, he had better mental functions. “He still didn’t always understand or realize that sometimes things were difficult [for my mom]… and he would get very upset with her. So as far as being a caregiver, I’d have to be a referee. I’d say ‘hey dad, this is the situation, remember my mom had a stroke?’ He’d be very appreciative of me telling him and it would change his attitude, but again, with his Alzheimer’s, it wouldn’t last very long before he forgot that conversation.”
Despite the frustrating and sometimes sad moments, Luc made it clear how important it is not to get so wrapped up in those emotions that you lose what is important –the moments you have with your loved ones and yourself. “I made sure that I could still maintain my life…and I do have time for myself. But taking care of my mother is my primary responsibility and what I want to do the most. I don’t know how long she’s going to be with me so I want to make sure I make the most of it.”
So what are those repeated words that are so often ignored?
“Cherish every moment.” He added, “You don’t know how many you’ll have.”
Editor's Note: As of the writing of this article, Antonio "Tony" and Jeanne Roberge have passed away.
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