Staying Together: Unique Challenges Faced by Couples with Differing Care Needs
It started, as it usually does, with subtle changes: a telephone in the cupboard, a warm jacket on a hot day, and increasingly frequent memory lapses. John was diagnosed with Alzheimer’s disease slightly more than three years earlier, but his decline came quickly.
For his wife Margaret, the diagnosis was an affirmation of her deepest fears. They had no children, so as his disease progressed, Margaret alone would be left to care for a husband with an eroding grip on reality.
She learned how to minimize John’s anxiety. Inquiries into the whereabouts of his mother were met with vague replies and diversions; it would do neither of them any good to point out that she passed away some 25 years before.
Margaret took good care of John, but he eventually began to require more than she could provide.
She feared the prospect of moving him to a long-term care facility, as much for herself as for him. She knew the idiosyncrasies of John’s condition and worried that placing him in the care of strangers would only speed his decline. It would also leave her alone in the house they shared for the better half of a century.
But as John’s needs began to eclipse her abilities as a caregiver, she realized that a decision had to be made.
A Common Issue
John and Margaret’s story is not unique. According to the Alzheimer’s Association, one in eight Americans 65 or older and nearly one half of those 85 or older are diagnosed with Alzheimer’s disease, leaving millions of couples with drastically differing care needs.
And the issue is not limited to those touched by dementia, as any number of physical ailments can cause one spouse to need a higher level of care than the other can provide. According to a study conducted by the Washington Center for Real Estate Research, approximately seven in 10 individuals over the age of 85 report some type of disability.
“People age differently, so such a situation is very common,” says Nohl Martin Fouroohi, executive director of My New Friend, an elder care consulting and life enrichment company. “Many couples aren’t aware of the options available to them, thinking nursing homes are the only type of senior housing out there, especially for dementia care.”
With more than 240 unique license types for senior housing spread across the nation and no standard definitions for care categories between states, it is understandable that many older Americans feel confused when faced with this decision.
Aging in Place
It is widely accepted that the majority of seniors prefer to age in place (live in their current home indefinitely) if possible, with a recent study by Aging in Place in America indicating that 89% of Americans age 60 and older desired to do so. While it is a nonissue for healthy couples, aging in place can become difficult when a spouse is in need of professional care.
Home health services—generally provided through a certified nursing assistant (CNA) who comes into an elder’s home and provides care for a set number of hours each day—have become a popular alternative to senior housing. Such an arrangement can prove ideal for a situation in which only one spouse needs professional care, as it enables the couple to remain in the home.
However, the home health option has drawbacks. According to a 2008 study by Prudential, the national average cost of a home health aide or CNA is $21 per hour. If five hours of care per day is needed, the total comes to a monthly rate of roughly $3,100 as opposed to $3,241 for assisted living, which includes room and board.
The design of a house can also be an impediment to home health services. Limited mobility can make an otherwise cozy home practically unlivable, and the cost to retrofit a house with necessities such as roll-in showers and stair lifts can be prohibitive for all but the wealthiest couples. Dementia adds another layer of difficulty, as issues such as a tendency to wander can make at-home care dangerous if the proper precautions aren’t taken.
Despite the difficulties, Fouroohi explains that even a couple with modest resources can develop a suitable home care arrangement if they are willing to be flexible and creative. Options such as working with nursing students or trading room and board for a certain amount of care can help mitigate the otherwise costly financial requirements.
In the frequent cases where in-home care is not a viable option, couples still have a variety of choices that can adequately accommodate both an individual with dementia or some other debilitating condition and his or her healthy spouse.
Many assisted living facilities provide specialized dementia care, as well as housing for relatively healthy seniors with no cognitive impairment in the same building. Sometimes, the memory care unit is housed in a separate wing or floor, while in other situations the residents are intermixed—a circumstance more common in smaller residential care facilities.
Fouroohi explains that both can be good options, depending on the situation. “I have had couples in assisted living where the wife lives in the memory care unit and the husband does not, and it works perfectly,” she says. “Conversely, some feel that their spouse would be agitated by separation or by a memory care ward, so they elect to move to a facility where they can share a room.”
Finding a Balance and the Resources to Help
According to Fouroohi, finding appropriate care for a couple with differing needs is largely a balancing act. “It often comes down to a prioritization of wants and needs between the two individuals,” she says. “Concessions are inevitable when dealing with two people at very different places in their lives who want to stay together. The best thing you can do is work with them and the rest of the family to develop an optimal compromise and then help them find a facility which best matches their criteria.”
Fouroohi says that a well-rounded understanding of the senior housing options in the area is invaluable. Online navigational tools, such as the SNAPforSeniors (www.snapforseniors.com), can also be helpful, especially when searching in an area that is unfamiliar.
Such resources often provide the most current information available and allow the user to search by very specific criteria, such as care levels and payment types accepted. Photo galleries and virtual tours allow users to “visit” facilities from their home or office. These tools help generate a qualified list of facilities to consider and can prove indispensable when an acute medical event dictates immediate placement.
As for the most important point to remember when helping a couple with differing care needs, Fouroohi says: “You can’t approach each case with a cookie-cutter solution, you must be creative and adapt to each unique situation—especially when dealing with dementia.”
Published November 3, 2008