By Marijke Vroomen Durning for Next Avenue
“I’m scared and worried,” wrote Dennis Abrams in a column in The Houston Chronicle in July 2017. Abrams’ husband, David Fox, had just been diagnosed with early-onset dementia. Abrams wasn’t surprised. The changes he’d seen in his husband were adding up and the diagnosis was confirmation of his suspicions. After 30 years together, they knew they needed to make plans to make Fox’s life easier and Abrams’ manageable. Little did they know that they had less than a year from the diagnosis before Fox would pass away.
For better or worse, in sickness and health, whether we officially make those vows or they gradually become part of our lives, there are few times this sentiment is as harshly tested as when a spouse or partner is diagnosed with a life-altering or life-ending illness.
The Number of Older Caregivers Increasing
Almost a quarter of family caregivers between the ages of 65 and 74 are caring for a spouse or partner, and this percentage rises to 46 percent by age 75 and older, according to a 2015 report by the AARP. A common vision of retirement, relaxing after a lifetime of work or caring for family, is not their reality. Instead, they are working to keep their loved one as safe and healthy as they can, sometimes at a great cost to their own health and welfare.
The change from spouse or partner to primary caregiver can often be gradual. It’s not hard at first to help with taking medications, keeping doctor appointments and providing meals and a safe place to live. But as the person deteriorates, the tasks become more frequent, intense and demanding. Caregiving becomes a full-time role, regardless of other commitments or needs.
Eventually, there comes a time when providing this care is no longer realistic. But since the burden of care can sneak up so slowly, how do we know when the time for professional long-term care comes?
Planning Ahead for Long-Term Care
No scenario is ideal, but it’s best when planning for long-term care begins before placement is needed, preferably when the ailing person can still participate in the decision-making. This is when there’s time to consider finances, weigh pros and cons of available facilities and clear up unsettled issues.
Abrams and Fox began planning Fox’s care shortly after he was diagnosed. “[David] was an attorney and he wanted to cover all of that while he still could,” Abrams says. “We decided that he would stay at home as long as was comfortable for him and me, and we started looking at places in Houston, but they were incredibly expensive.”
Abrams says Fox was reluctant to spend too much of his savings on care, which would leave little behind after he died.
Abrams cared for Fox as long as he could. “I work at home, so it was basically me all the time. He was still able to care for himself physically, but I was getting up every 10 minutes to help him, taking him for walks, all of that. Answering question after question, dealing with sundowning (late-day confusion), it was exhausting,” he said.
After an extensive search, in March 2018, the couple found a small affordable place operated by a husband-and-wife team, both registered nurses. Unfortunately, Fox soon began to develop medical issues. He died of a heart attack a few months later.
3 Signs It May Be Time to Find a Care Facility
Whether a couple is able to plan ahead or not, it’s important that the caregiver recognize the signs that it might be time to find a care facility for a spouse or partner. Here are three:
- You’re not getting enough sleep: How often is your loved one waking in the night? Every time he or she wakes, you do as well. Not getting enough sleep can affect your physical and mental health. Perpetual exhaustion can make it hard to perform everyday tasks and make seemingly simple decisions, and it can cause accidents.
- The medications are unmanageable: On average, older adults in the U.S. can take up to five prescription drugs at a time, and this can increase, depending on the severity of their illnesses. Medications have different requirements and timing to ensure they are effective; some must be taken on a full stomach, some on empty, some are taken at night, others in the morning. The instructions can become overwhelming. If your spouse or partner resists taking the medications or has serious side effects, this task can become even more difficult.
- You cannot physically manage anymore: Physical care can range from helping your loved one eat or with toileting, to lifting him or her in and out of bed — or off the floor after a fall. Without help or with only part-time in-home help, this can become dangerous for both of you.
Getting the Family On Board
Deciding to place a spouse or partner in a long-term care facility or nursing home can be tough enough, but when adult children aren’t on board, it can be even more challenging.
Ginger Houghton, a clinical social worker/therapist in Bloomfield Hills, Mich., says that adult children who may be hesitant about moving a parent often feel that way because they don’t understand the full impact of their parent’s illness.
“Invite the family in more to see the day-to-day life issues,” Houghton suggests. They could try caring for their parent for a weekend or go away with both parents for a getaway. “Most of the time, [the children] get a much clearer picture of how many times their parent is waking up during the night, how many times a day or week they have to be physically present, how many medications, how many appointments. It’s an eye-opener because they don’t necessarily have the appreciation until they are living it.”
If the disagreements seem beyond resolving, a professional may be the next step. A therapist or social worker who specializes in aging can help guide the family through different resources available.
“You can look for Area Agencies on Aging, that may have advocates,” Houghton says. “They have resources to help direct people, which can be really helpful. Any of the Alzheimer’s associations have someone you can reach out to. They are a good resource and a good starting place to build something more long-term.”
Don’t Wait to Ask for Help
Planning for long-term care can start at any time during the journey, but the sooner you get help, the better.
“The caregiving experience is really isolating in a lot of ways, and friends and family can struggle to understand,” Houghton says. “Reaching out gives you another toehold and another way to figure out how to move forward.”
Placing your spouse or partner in a care facility is not a failure. “It’s OK not to be able to handle it,” Abrams said. “It’s OK to be exhausted. It’s OK to be frustrated. You can’t be Florence Nightingale; you’re not a trained professional. And at a certain point, a trained professional is what you need. And that’s OK. It’s good for you and for them.”