Red River Valley floods show need to plan ahead for emergencies

Being a caregiver for a disabled family member can be difficult, especially for those who live far from their loved ones. Add a natural disaster to the mix and it becomes all the more challenging. The story of two sisters, Diana and Cynthia, and the Red River Valley floods, is a reminder of how everyone should plan ahead.

Lifelong Fargo resident Diana, 61, had maintained a high level of independence for many years. “Our mother always wanted Diana mainstreamed, before that was common,” Cynthia said. “She demanded a lot from Diana and held her accountable.”

Diana married and had her own home. Her husband is also disabled. Her parents helped them for as many years, as they could, and her siblings visited and checked in from afar.

When the Red River began to rise in late March, officials in Fargo, Moorhead and other river valley communities made the decision to evacuate nursing homes, assisted living facilities and hospitals. That kept residents and medical patients safe. But it meant logistical and care challenges as well as stress for those being moved.

Family members also felt the stress. For Cynthia, watching the flood from her home in St. Paul, the rising Red River had her worrying about Diana. Diana, who has cerebral palsy and a developmentally disability, has been a resident of Fargo’s Bethany Homes since summer 2007. Last November Diana entered hospice care at the nursing home as her fronto-temporal dementia became more acute.

Family members have had to search for resources and find ways to help Diana from afar. When Diana developed more serious health and mobility problems several years ago, Cynthia and other family members increased their involvement in her care. “One challenge we had was finding resources, to keep her in her home for as long as she could live there,” Cynthia said.

Most services for persons with cerebral palsy center on children, not adults. Through Gillette Cynthia was able to find a doctor who specializes in the health care issues faced by adults with cerebral palsy. Another search found a trust fund to help pay for a specialized wheelchair for her sister.
Other resources had mixed results. Family members were pleased to find resources to renovate a bathroom for accessibility. But the work was done for a right-handed person. Diana is left-handed, so the bathroom was difficult for her to use.

Strengthening the family’s network to look after Diana and her husband was a challenge. Getting people to recognize when something was wrong with her was another. “I think sometimes there is an attitude toward people with disabilities to say ‘Pull yourself together’ and ‘why can’t you do this’ when a situation changes. “I’d have to say, ‘Don’t get mad at her’ as her health issues became worse.”

When the dementia was diagnosed, Cynthia had to fight to get Diana into a nursing home. Luckily, it was Bethany. “She had volunteered there for a long time before she became a resident, so everybody knew her and loved her,” Cynthia said.

Having that level of trust has been a key for the family. “Because we have had such a good relationship with the nursing home, we have been able to trust the decisions they have made for Diana,” Cynthia said. That has become more important as Diana’s health worsened and she lost her ability to speak.

Through email and Web cams, as well as regular visits, Cyn-thia has been able to stay in almost daily contact with her sister and caregivers. The family set up a Google group and ways to monitor Diana’s care and stay in touch. Family and friends regularly send cards and pictures, which Diana has always loved. “We have to look at it as we’re a community and we’re all in her care together,” Cynthia said.

Then the flood came.

“Diana’s guardian called and told me Bethany had been evacuated but we didn’t know where she had been taken to,” Cynthia said.

The family and caregivers were told Diana had been taken to the airport but nursing home staff decided she was too frail to make a flight. So she was taken to a nursing home in Langdon, a small North Dakota town.

“I was on it, but it took about two days to find out where Diana had been taken,” Cyn-thia said.

She is well aware of the logistics and planning it takes to evacuate a nursing home, hospital or assisted living facility. “It’s amazing, what goes into that and what has to happen to get people moved safely, with their medicine and everything they need. The pictures you see in the newspapers and on television really don’t tell the story.”

“Overall, I think things were handled as well as they could have been,” Cynthia said. One change Cynthia would like to see in resident care and evacuation plans is to have as many family and guardian contacts on hand as possible. In Diana’s case the nursing home didn’t have the guardian’s cell phone number, which delayed contact.

Another idea Cynthia raises is that of having family members and other responsible parties involved in future emergencies. If possible, she would like to have had Diana put in a nursing home closer to the Twin Cities, so she could have helped with her care. On a short-term basis in emergency situations, the family members would have been a great help. “With her care, there are just a lot of little details that people may not realize until they’re attuned to her situation.” Her siblings know these little details.

The Langdon nursing home has no hospice unit but is small enough that one-to-one care is provided. At last report Diana was smiling and had settled into her temporary home. Family members expected her to move back to Fargo April 3. As Access Press went to press, Cynthia was planning a trip to see her sister. That was delayed by blizzard conditions in the Red River Valley.