Planning: An Important Resource for Spousal Caregivers
By Jane De Broux, Dane County Caregiver Program Coordinator
Given the significant number of adult child caregivers of older parents, it is easy to assume that most older adults are receiving help from family. However, a study published in the June 2019 issue of Health Affairs shows married partners frequently serve as the only caregiver for their spouse in the last years of life. According to the study, a third of spouses receive little or no help from adult children. Only 11% of spouse caregivers receive support from other family or friends, and just 40% of spouse caregivers seek paid help. In fact, the majority of spouses who provided care at home during the last years of their spouse’s life did not receive any support—paid or unpaid—for self-care or household tasks.
Solo caregiving for a spouse does have some positives. Doing so can be a meaningful and valued personal experience that connects the caregiver to their loved one. It also allows the caregiver more control by avoiding any arguments among multiple caregivers on how to proceed. At the same time, spouses as caregivers experience more burden and depression than other family members do. They may struggle to ask for help or feel they lack choice about providing care. They also often provide complex and physically-demanding care when a spouse is seriously ill.
Families must take into account that older adults caring for a spouse are very often coping with illness and disability themselves. In some cases, couples have functioned like two parts of a whole—dependent on one another to get by. It is not uncommon for one person in the couple to handle certain tasks of daily living while the other manages to take on the rest. Caregivers in this situation are particularly vulnerable when they don’t have help, and the surviving spouse may well lose their ability to live in their home once they are on their own. In these situations, it can sometimes be difficult to distinguish the caregiver from the care recipient.
As our reliance on family caregivers to assist seriously ill older adults at home increases, the need to provide assistance to couples caring for one another pulls focus. Programs like the National Family Caregiver Support Program (NFCSP) play a prominent role in helping caregiving spouses access paid help. Unfortunately, need is quickly outpacing resources available for grants alone. When considering how to best support caregiving couples and to help them avoid the most serious pitfalls, planning is a critical component.
If you are an older adult providing care to your spouse, the Aging & Disability Resource Center of Chippewa County can help you take a look at available resources and find support. Early on, respite and self-care are important priorities, as is understanding what you are capable of providing as time goes on. Important considerations include what happens when your home no longer works for your changing needs? What are your options given your health status and financial situation? How do you stay connected in the community so you don’t become isolated? What are your wishes for end-of-life care? It can be painful to plan how you will manage when a long marriage or partnership changes dramatically. It doesn’t come naturally to us to plan for the inevitable losses life brings, but doing so can bring relief and even peace of mind to the extent that is humanly possible.
If you are an adult child with one parent who is caring for the other, important considerations also include what kind of help they are willing to accept and what kind of help the caregiver is realistically capable of providing. The Aging & Disability Resource Center can help with education about options and resources. Delaying until an inevitable crisis occurs multiplies caregiver stress and limits choice for everyone involved.