‘Quis custodiet ipsos custodes?’ is a famous Latin phrase from the Roman poet Juvenal, translated as ‘Who watches the watchers?’
In the same way, who will take care of the husbands or wives who are confined at home 24/7 to attend to the needs of their spouses struck by a debilitating stroke or heart attack, or afflicted with a long, lingering illness such as cancer, impaired kidneys, dementia, severe knee problems, diabetes, and similar health issues common to seniors in their advanced years?
Marriages in late life often turn into a patient-caregiver relationship when bodies start to break down in the natural course of life.
Consider the case of someone whom I have coffee with at least once a week. I was hoping to write something similar to ‘Tuesdays with Morrie’ a memoir by American author Mitch Albom about a series of visits he made to his former university sociology professor, learning profound life lessons about love and wisdom.
Lately, our conversation has veered into his current situation. He reveals that he has chosen to devote his remaining years at home to tend to the needs of his wife, who, like him, is 90 years old and shows symptoms of early stage dementia.
Although they have employed a domestic helper and a professional caregiver to watch over her and tend to her needs, his spouse only responds to him. She can’t recognize even her own children sometimes. It is he she asks for when she is awake. She gets agitated when she doesn’t find him at her side.
What this means is that he is at her beck and call. When he has to see a friend or colleague out of home, he needs to meet them somewhere near because he can’t be physically far from her.
He, however, emphasized to me that he has no problem with his present situation and in fact he has embraced it wholeheartedly. After all, this is what he signed up for when they got married: ‘In sickness and in health, for better or for worse.’ Being a former theater and film actor and director, he says with a wink, ‘this is Act 3 of my performance on the stage of life.’
He tells me of the time when a stranger approached him and said that he was touched and moved by the attention he was giving his wife. On social media, friends say he is a source of inspiration. ‘I appreciate all those positive comments,’ he says. ‘Nakakataba ng puso (It gladdens my heart), but we can romanticize it only so far because the reality is that it’s hard.’ As one sympathetic colleague, now a widower, advised him: ‘Dapat hindi ka nauubusan ng pasensya. Sinlalim ng dagat.’
His case got me and my wife thinking about ourselves as well as all the other elderlies stuck at home. More and more senior couples I know are getting confined at home, taking care of each other, with one spouse immobilized by chronic health conditions that debilitate elderly men and women.
Compared to other family members, spouses are more likely to commit to a long-term caregiver role. Who else would have the patience, compassion, endurance? The children? They have their own respective families to take care of. They may drop by for a visit now and then, but they would rather just give financial help than stay day after day with a parent who demands complete attention.
So, let’s not over-romanticize the spousal caregiver role. It is a 24/7 job. No, it is a really another career for the spouse. Beyond the compliments, what senior caregivers really need are concrete and helpful ways to enable them to do a better job. For if society would take care of them, they can do a better job of taking care of their respective spouses who are confined to bed or wheelchairs at home.
Aside from caregiving skills, this ‘spousal caregiver career’ requires a specialized set of skills and knowledge, including physical, mental and spiritual conditioning, psychology, geriatric medical knowledge, anger management, spiritual conditioning, among others.
May I propose the following ideas for our policymakers to consider in future legislation related to seniors’ wellbeing?
1. Formal training for seniors who become designated caregivers.
One of the common challenges of spouse-caregivers is that no one ever told them what to do with a spouse stuck at home by serious ailment. Instead, they are ‘just doing this by the seat of our pants.’ They face questions like: what do I need to know about dementia; how do I put on and change my spouse’s diapers; when should I bring her to the hospital, and so on. A government funded caregiver education and training program should be designed for them, something like ‘Beginner’s Guide to Being a Spouse Caregiver.’ It’s a whole different kind of ballgame that not everyone can play. They need to master it fast.
2. Spiritual counseling
Spousal caregivers need someone to advise and guide them and help them develop and strengthen mental and emotional fortitude. A rehabilitation psychologist says strokes and cancer put very different pressure on spouses than other diseases do. Equipping them with positive effective caring strategies is important. I know a few who become depressed for being left alone to do a thankless task. How are they supposed to cope mentally and spiritually with caring for a disabled and being stuck at home for the rest of their lives? My wife once told me: ‘Pag ako nagka dementia, huwag mo naman ago sigawan at pagalitan.’
3. Financial support in the form of stipend for spousal caregivers
Time and again, my 90-year-old friend lets out a heavy sigh: ‘I love caring for my wife but it’s draining all my savings.’ Since not all aged couples can afford to be in assisted living facilities, the government should at least find ways to provide a stipend for full time spousal caregivers. In some countries, there are several government programs, or funding sources, that exist that can pay spouses or family members as caregivers. We urgently need to initiate the development of support measures tailored to spousal caregivers with a limited household income.
I can only hope that our policymakers can come up with laws that incorporate the elements of positive spousal-caregiving into effective policies to support spousal-caregivers in the relentless battles they have to fight day in and day out.