'Masama Ba Kami If We Are Also Hurting?' Thoughts Of A Spouse Caregiver

The article was updated on October 21, 2024.

VJ and television host Robi Domingo recently celebrated his 35th birthday following a two-part Instagram post of having 'birthday blues' and sharing his 'birthday wish'. In the said post, Robi pours out his heart and expresses his wish for wife Maiqui Pineda and that is for her ‘sickness to be gone’ so that they may be able to have a baby soon. Maiqui was diagnosed with dermatomyositis, a rare autoimmune condition marked by muscle weakness and a distinctive skin rash.

"My plan in the next five years is to be a better 'houseband' and husband. And hopefully, next year, when the Lord permits it and when her condition permits it—depende sa clearance ng doctors—I hope to introduce you to a baby Robi or baby Maiqui, or why not twins?" he says in the post.

Then he continues by putting his longing for a child into words, "Nakakasa na ako na by this year—actually, by this month—sana meron na akong anak. But then it happened," he said. "It's hard… Maybe it's not time yet, but I'm hoping na mangyari 'yon."

The said post stirred many reactions from netizens leaving the comments section ablaze—labeling Robi insensitive, narcissistic, and selfish. One netizen commented, “As a woman, I feel hurt. I find this insensitive and selfish. Your statement is making me feel sorry for your wife. It’s like you’re blaming her for being sick and not being able to conceive your child. Sorry for saying this, I know you just want to have a child pero you could have been more sensitive and chose your words wisely.”

Meanwhile, another netizen commented, “Napaka pressure naman to sa wife mo. Knowing her condition.” Then came another comment from a netizen that reads, “Ang narcissistic nito. Gusto niya gumaling wife niya just so she can give him a child? Imbis na his wife can focus on healing iisipin pa niya na di siya enough kasi di siya makapag provide ng anak for this dude.”

"Never ba magiging valid ang pinagdadaanan naming spousal caregivers kasi may sakit ang asawa namin? Kelan magiging valid ng walang 'pero/but' and panghuhusga?" -Caregiving spouse in an anonymous post on Smart Parenting Village

But, who cares for the caregivers?

In an anonymous post on Smart Parenting Village, a community of more than 107,000 parents who aim to be better at parenting, a spousal caregiver was triggered by the backlash Robi received, and so she asks, “Bakit hirap ang mga tao to sympathize with the spousal caregivers? Masama ba maging tao ang mga spousal caregivers?”

She continues with even more thought-provoking questions, “Masama ba if you hold on to those dreams and plans? Masama ba kami if we are also hurting, if naiinis, nalulungkot kami sa situation namin? Masama ba ang spousal caregiver to hope, to pray, to dream for the day they get back to what used to be and to get back to the original plan? Masama ba ang spousal caregiver to grieve for what could be and could have been? Masama ba kami to ask for that one day, to a few days, or a few hours na kami naman muna ang mauna? Are we not allowed to have struggles and to open up about our struggles coz it puts 'unnecessary pressure' on our spouse?”

The mom and wife then went on sharing her story as a spousal caregiver. A spousal caregiver, according to a site that supports spousal caregivers, is defined as someone who is married to or a partner of someone with a chronic illness and/or a long-term disability, regardless of the degree of illness.

“For years since I started the journey of spousal caregiver, 24/7 it's about my spouse and our child…Hindi madali to accept what happened, what is happening and what will happen. Hindi madali to let go of what used to be and the plans made lalo na if yan ang pinanghahawakan to continue the fight na walang kasiguraduhan na it will be a happy ending. Hindi madali to live on a limbo,” she details. She continues to ask, “Pero ganun ba talaga? Never ba magiging valid ang pinagdadaanan naming spousal caregivers kasi may sakit ang asawa namin? Kelan magiging valid ng walang 'pero/but' and panghuhusga?”

In a TEDxSnolsleLibraries talk by nursing professor Frances Lewis, she explained that there are four ways that caregiving affects health—even couples in happy marriages.

"The caregiver’s assumptive world is challenged, including all future plans, their relationship with their spouse, and everything they had considered “normal” in their life." —Professor Frances Lewis

4 ways caregiving affects health

Lewis described how caregiving can allow the illness to literally “jump” onto the caregiving spouse and be reflected in terms of:

1. Anxiety and depression. 25 to 35% of spouse caregivers become clinically depressed or anxious, regardless of whether or not the illness of the one they are caring for is lifesaving or curative.

2. Sudden changes. The caregiver’s assumptive world is challenged, including all future plans, their relationship with their spouse, and everything they had considered “normal” in their life.

3. Confusion. The caregivers don’t know what to say or do, as their old ways of being a partner no longer work and are not helpful.

4. Tension. The relationship between spousal caregiver and patient is negatively affected as marital tension escalates over an illness that doesn’t have an easy fix.

She also mentioned concepts about caregiving a spouse and called them ‘myths’ that we need to overcome.

Caregiving myths that we need to overcome

Myth 1. Feelings are easily contained by an individual.

The caregiver and the patient have feelings that feed into each other. If the patient is feeling sadness or anxiousness, that cloud will be felt by the caregiver.

Myth 2. All you need is a happy marriage.

Although happy marriages are buoyed by a history of a positive relationship, it takes more than a happy marriage to get through a serious medical illness.

Myth 3. The spouse must swallow their feelings and forget about themselves.

Research shows that swallowing feelings causes the stress of caregiving to grow worse, and studies have shown that caregivers who practice this have elevated stress hormones. This also alters their biological pathways that protect their immunity.

Disengage: learn the art of 'deadma'

The anonymous post spurred reactions and tugged some heartstrings. One parent said, “Akala kasi ng iba ganun kadali mag-alaga and to see your loved ones going through that. And sometimes you feel so helpless kasi you don’t even know how to help them aside from just being there for them.”

Another parent commented, “What you are feeling is valid. As the spouse na inaalagaan, after my brain surgeries, we still talk about dreams and a future together when I recover fully. Even if I am now a PWD. It gives me hope. Those who never went through battling sickness, as the sick person or caregiver, will never understand.“ To which the author responded, “OMG ma'am, naiyak po ako kasi bullseye. We do still talk about our plans and dreams. And quite honestly, those wants and dreams that we have made really do keep us going.”

A parent suggested, “Learn the art of deadma…just live your life. Gawin mo ang gusto mo gawin hanggat kaya, take care of your mental health. You cannot pour from an empty cup kaya kailangan lagi kang refreshed and strong kasi ikaw na ang caregiver. You only have yourself to rely on kaya do what needs to be done para lagi kang nasa kundisyon to take care of others, kasi pag ikaw ang bumitaw pano na?”

Meanwhile, one parent wrote, “Your emotions are valid po. To feel that way being the spousal caregivers. For me, ang mali dun is airing it sa social media. Not everyone will understand and sympathize with the situation. And since it’s posted in public--people will feel entitled to comment event the harshest words they could throw. For this situation, best not to post publicly instead open up to significant people who can provide the emotional support needed. The public will not provide all the positive support that a person need.”

Read Also: 10 Ways To Lift Yourself Up When You're Feeling Down

Self-care is not selfish

Lewis mentions in the TedX talk that the caregiver must learn to also take care of themselves.

Her tip? Allow at least 15 minutes for themselves—not thinking about or solving the problem. She also mentioned that there are two skills a spousal caregiver must have in his toolbox: attentive silent listening and asking open-ended questions.

According to Lewis, a study was conducted about the effectiveness of those tips, and they found out that doing self-care and practicing such skills, spousal caregivers have significantly improved on their anxiety, and depressed mood and significantly increased their competence, self skills, and communication skills.

Spousal caregivers' blood and saliva were also examined to determine their pro- and anti-inflammatory biomarkers. “What do we find?” Lewis asks.

“Significantly improved and more regulated anti- and pro-inflammatory pathways. So, their bodies changed…So the challenge for all of us, including me, is how do make a choice to thrive, and not just survive, a serious medical illness when a family member has it? Your choice is how you decide for yourselves, how do you set this up so your journey as a caregiver is one of healing and thriving,” she concludes.

Do you believe that self care is important? Here's why.