Will your marriage survive? The realities of spousal caregiving
Caregiving comes in all forms and the bond is special between caregiver and care recipient, no matter the relationship.
When a caregiver is a spouse or partner, the arrangement takes on additional layers of emotion and potential pain points. No one needs to remind you that both marriage and caregiving are hard work. And when marriage is the basis of the relationship, your caregiving responsibilities take an extra toll on you.
The difficult truth is that the person who was the romantic center of your universe is now dependent on you for their well-being. This can severely test your relationship.
And damage it. Or cause it to fall into ruin.
When you married, it probably didn’t occur to you that chronic illness might drive a wedge into your union. That you might one day resent the person you love with all your heart because their disability threatens your own health and causes you to lose sight of who you are.
At the heart of the caregiving relationship with your spouse is a deep and abiding love. While there are some hard truths that can erode the affection between you, there are also tools to help manage the difficulty before it’s destructive.
What makes spousal caregiving different?
When you become a caregiver your role in the marriage changes. The full burden of household management, in addition to details of your spouse’s care, can mean a dramatic shift for you. Your marriage may become less of a love relationship and more of a custodial arrangement.
If there were unresolved issues between the two of you before, these might intensify and become more challenging around the disability in your household.
Early in your marriage or partnership, you thought you’d experience each stage of it with each other by your side. The disability puts a damper on your hopes, and worse, it binds you as caregiver to the uncertainty of your spouse’s well-being and survival.
When your spouse is no longer capable of self-care you may take on a mothering role for the more intimate aspects of care, according to Dr. Ruth Kopp, author of When Someone You Love is Dying. Just because you want to help with bathing, toileting, and feeding doesn’t mean your spouse will agree or be comfortable with it. Their dignity might suffer, even with your well-meaning effort.
Diana Denholm, author of The Caregiving Wife's Handbook, suggests that feeling a lot of sympathy for your sick spouse might inadvertently make them less self-sufficient. If you start to regularly do things for them that they are still able to do for themselves, you might hasten their being an invalid. And invalidate them in the process.
There might be a contrast between your private and public pain. Maintaining your identity aside from being your spouse’s caregiver helps to keep you grounded, but it’s not easy because nearly everything you do revolves around your spouse’s care.
The potential for these situations may signal that it’s time to call for outside help. SeaCare caregivers are equipped to help with personal care tailored to your loved ones’ needs. We understand the complications that caregiving spouses face and can provide compassionate assistance to help ease your burden.
The emotional toll of spousal caregiving
Maybe you’ve read accounts of devoted caregiving spouses who see their situation as a gift and would never dream of complaining about it or expressing frustration. Realistically, while spousal caregiving has moments of loving exchange, it’s also taxing and leads to a range of difficult emotions.
Grief is not just a reaction to someone’s death. When you’re caring for someone with a chronic illness, you grieve the loss of that person’s independence or cognitive ability, and the loss of normalcy in your life together. Grieving is the process of coming to grips with things that are sad and unfair.
Anticipatory grief is the uncertainty you feel when you believe loss is imminent and you think about the worst-case scenario. Because the normal foundation of your life has eroded, your future can look especially blurred. You may struggle to find meaning in other parts of your life.
Anger may follow the initial realization that your spouse can no longer take care of himself or herself. It might be directed inward, at your spouse’s doctor, or directly at your spouse for becoming disabled.
Loneliness is common, particularly the feeling that no one else understands the depth of your burden. You may have feelings that you’re embarrassed to talk about. Well-meaning friends and family may not ask about your well-being, because they believe it’s your disabled spouse who deserves attention. Or they may sympathize so much with your spouse that they become critical of the care you’re providing.
Guilt crops up for many reasons – you feel guilty that your spouse is suffering and you are not, or feel guilty because you feel sorry for yourself and the hardship you face. When the illness is so debilitating that you have moments of wishing your spouse would die, the guilt you feel in the aftermath is especially painful.
Co-dependence can be very damaging because it gives rise to frustration and deep discomfort according to Diana Denholm. Co-dependence means enabling. An example is stepping in to do things for someone that they should be doing for themselves. Denholm says this allows the person to continue weak behavior that hinders their improvement. And it can lead to resentment for you as caregiver, but it’s a tough thing to let go of because of your strong urge to fully care for your spouse.
These emotions are commonly felt by nearly every caregiving spouse. You’re not alone.
Surviving spousal caregiving without losing your sense of self
If you’re a caregiving spouse, you’ve already heard from well-meaning people that you need to take care of yourself. You know that it’s easier to talk about self-care than to actually do it.
Some self-care involves finding opportunities to get away occasionally – if only for an hour here or there – to see friends, get outside for a walk, or simply to have some alone time. If your spouse requires 24-hour care, occasionally arranging for overnight assistance can help you to get a good night’s sleep.
Self-care also means deciding to seek outside help – another family member, a trusted friend or neighbor, or a paid caregiver.
There’s another way of practicing self-care that calls for your spouse’s cooperation in building a framework of understanding.
In The Caregiving Wife’s Handbook Denholm outlines a unique system of creating what she terms “understandings” – agreements you arrive at with your spouse that help you to maintain a respectful relationship around the challenges of your spouse’s disability. It involves a commitment to communicate, but the idea is to put you as caregiver in a position to stay healthy, maintain your sanity, and not lose sight of who you are.
Understandings with your spouse cover things like:
- Personal preferences. What about sleeping arrangements? Expectations around intimacy? Assistance with personal care like bathing and toileting?
- Information sharing. How much do you share with family and friends?
- Safety issues. Is it time to stop driving? Is the house organized to accommodate limited mobility? What if your spouse refuses to observe safety guidelines?
- Division of household tasks. How much is your disabled spouse willing and able to do? Will they agree to pitch in?
- Adherence to medical advice and treatment. Who is responsible for monitoring medication and making health care appointments?
- Establishing basic ground rules. What about visitors? When you disagree, do your spouse’s feelings and wishes overrule yours?
Understandings cover anything that’s of concern to you. Reaching them can reduce arguments and tension.
Acknowledging that some long-standing differences won’t change and deciding to let go of them as pain points can go a long way toward making life more pleasant in your already-disrupted household. It’s a way of recognizing options, which is beneficial to you as a caregiver.
I urge you to pick up a copy of The Caregiving Wife’s Handbook. Diana Denholm offers practical suggestions, worksheets, and a list of 50 do’s and don’ts. She adds validity to her narrative as the wife of a terminally ill man and adds stories of other women to illustrate different ways of managing caregiving.
Also worth your while because of its startling honesty is Kate Washington’s recently published Already Toast: Caregiving and Burnout in America. It’s a raw chronicle of a middle-aged woman dealing with her husband’s sudden and serious illness, along with caring for her young daughters and trying to maintain her career.
I read both books cover to cover – they are compelling accounts and are available through the King County Library and Seattle Public Library systems.
Arranging for compassionate, reliable, professional assistance through SeaCare can provide the relief you need to renew and recharge. When it’s time to reach out for help, contact us and we’ll work with you to find the right balance of care for your household.
Katie Wright writes about aging and senior wellness from Bellingham, WA. You can read more about her here.
If you or a loved one you know are looking for additional support during this time and are interested in scheduling a free in-home assessment, please contact SeaCare In-Home Care Services today! A SeaCare family member is standing by. 425-559-4339.