Stress and isolation are risks for all caregivers, but those who are caring for a spouse can be especially vulnerable. Factors unique to being a spousal caregiver raise the odds that someone in this situation will miss out on helpful resources –- and in turn raise his or her own risk for depression, disease, and even death.
(Though research shows that risks vary by age, gender, and the spouse's condition, they exist whether the spouse is caring for a husband or wife with dementia, cancer, heart disease, stroke, or other illnesses and disabilities.)
Obviously not everything about caring for a husband or wife who's ill is grim. But the grim parts can be as dangerous as they are often overlooked.
If you're a spousal caregiver, please consider the following factors that point to a need for giving in to more help, not less. And if one of your parents is looking after the other, these factors are worth being aware of as you look for ways to be helpful:
1. Spouses don't just have a close relationship with the person in need –- they have an intimate relationship.
Marital intimacy magnifies everything: The impulse to shoulder the burden of care alone, the need to do everything imaginable to protect and heal one's beloved, the grief over the changing relationship, the desire to keep the situation private.
Net result: Magnified work, magnified stress, magnified grief, magnified isolation.
2. Spouses don't always think of themselves as caregivers.
My late mother took care of my dad singlehandedly as his dementia progressed, but I don't know that she ever self-identified as a "caregiver." To her, what she did was an extension of the feeding, cleaning, and general nurturing she'd always been responsible for in their marriage.
Net result: The murky line between spousal duty and caregiver duty leads a spousal caregiver to avoid even looking for resources that can help with such basics as cooking, cleaning, and help with the activities of daily life. They risk falling into the "it's my job" martyr syndrome.
3. Spouses tend to cover for one another.
Spousal caregivers tend to see themselves as they always have: part of a tight marital unit. Outsiders aren't privy to really knowing what goes on inside a marriage. Short visits home often masked my dad's declining condition because, I later realized, my mom arranged his life to make things as easy as possible for him. Near the end, she did all the driving, cooking, shopping, bookkeeping, and life planning for the two of them, without mentioning it. It made it easier for the rest of us not to really notice (or should I say to willfully ignore?) how bad his cognitive abilities had become.
Net result: A conspiracy of silence that leaves adult children, neighbors, friends, and others -- sometimes even trusted physicians -- in the dark, and unable to lend a hand.
4. Spousal caregivers endure a shifting balance of power.
This happens with adult children of aging parents, too, as roles reverse. But whereas children and parents never have truly "equal" relationships, equality and balance are the very basis of a good marriage. When sickness or disability throws balance out of whack, it can be stressful for both parties.
Net result: Added stress and confusion –- and a tendency to withdraw.
5. Spousal caregivers can feel isolated by their unique circumstance.
Socializing can feel awkward if your friends in couples remain healthy. Like widowed spouses, spousal caregivers may find themselves feeling like others can't relate, or being left out of a former couples-based social life. As part of a "hidden subculture," spousal caregivers find it hard to connect with others in their shoes. They may even feel disloyal about confiding in friends or strangers about their predicament.
Net result: Still more damaging isolation.
Resources that can help:
- The Well Spouse Association. If you can possibly travel, or live in the Washington DC orbit, this unique support community for spousal caregivers is holding a conference coming up Oct 23-25 in Annapolis, Maryland.
- The Caring.com Caring for a Spouse Support Group includes discussions amongst those caring for a spouse.
- Local eldercare resources exist that are both specific to spousal caregivers and about eldercare generally. Experienced pros know how to help people in the difficult situation of caring for a spouse –- a situation that's isolating but by no means isolated.