January 26, 2018

Preparing for the future when you have a chronic health condition

Even as gender roles have evolved, women are often still expected to be the primary caregivers, from raising children to caring for an aging parent. But what happens when a woman develops a debilitating disease later in life — especially if she’s already outlived her spouse, as is often the case? Who is left to care for her?

A recent study published in Neurology found that 79 percent of women with Parkinson’s disease had a caregiver, compared with 88 percent of men with the disease. Female patients are also less likely to have a spouse as their caregiver and more than twice as likely to have a paid caregiver, according to the study.

Outliving a spouse isn’t the only factor that leads to caregiving dilemmas.

“In years past, families lived nearby. You lived in the same city as your parents and grandparents, and that made the transition for aging relatives easier,” said Nancy Ninman, NP, of UW Health’s Movement Disorders Clinic. “Now we often have children who live across the country or around the world, and that makes caregiving a challenge.”

Tips to help prepare when you have a chronic health condition

There’s no way to predict what might happen to your health down the road or who might be around to support you, but there are some steps you can take to avoid difficulties long before your health is impaired, Ninman said. She shares these tips:

Turn to others for support

It doesn’t have to be a spouse or child. Ninman often sees sisters or sisters-in-law accompanying patients with Parkinson’s, and a good friend can also be a resource. Recognize that there can be some bumps as you negotiate this new aspect of your relationship.

“Parkinson’s is a test of any relationship. It’s a difficult disease, and it affects people in multifaceted ways. But it can also make a relationship stronger. You have to have work together to move forward,” she said.

Re-evaluate your location

It might make sense to move closer to family who can help support you, but it also depends on where your family lives. Long-term, you may want to live in a place that’s convenient to where you need to go and that offers public transportation.

“I have some patients who live close enough that they can get to their clinic visits via walking, and I have others who navigate the bus system,” Ninman said. “If you can get on the bus, you can get to the grocery store, pharmacy, clinics and places to eat.”

Plan your home environment for the future

Do you live in a two-story house with the only bathroom upstairs? Do you have a massive yard that requires regular care? A small apartment or condo might allow you to live independently longer. Some senior-living communities also offer nursing services and transportation to residents who need it.

“It helps to work through some of the issues before the crisis comes,” Ninman said. “I think what’s really difficult for people is when they reach the point of being unable to do stairs very easily, the disease forces them to make a decision about where they are going to live. Someone else may force you and say, ‘You can’t live here any more.’ When you’re able to make those decisions, it’s may be easier than someone else making the decision for you.”

Decide your power of attorney/living will

“A lot of people don’t want to talk about death or being disabled, so they avoid thinking about this, but it’s important to designate somebody who will speak for you if you can’t speak for yourself,” Ninman said.

She recalls a single man who spent six months in the hospital because he was deemed incompetent and didn’t have a legal representative, and it took months for the court to appoint a guardian before he could be discharged from the hospital. The paperwork for advanced directives is easy and doesn’t require an attorney, and it also ensures that your loved ones are clear on your wishes. You can find the forms online or get them from a hospital chaplain or clinic social worker.

  • Learn about advance care planning and how it can help protect you and your loved ones in the event of illness. Learn more

Make the most of long-term care insurance

“Sometimes people forget that long-term care insurance can cover care inside of the home. They think, 'This will kick in once I go into the nursing home,' " she said. “But there are a lot of policies that allow you to tap into the money you’ve socked away and use it to get help inside the home. It could be personal caregiving or cleaning."

Take advantage of community resources

Get familiar with the Aging and Disability Resource Center or other local organizations that serve older people.

"Many people aren’t aware of the agencies you can call to say, 'I don’t have a way to get to my doctor’s appointment,' Tapping into local resources can help you problem-solve those issues,” she said. "Senior centers are amazing places, too. You may not need hands-on caregiving, but people who live alone tend not to thrive as well because they tend to become socially isolated. Senior centers can provide free or low-cost lunch, card games and other activities. There are huge benefits of places where people gather."

Living alone with a chronic condition is never easy, but by planning ahead and taking advantage of all your resources, it might be more doable than you think.