Sooner or later, most people are either going to care for someone they love – or need that care.
Bette Moore is one of the 44 million unpaid caregivers in the U.S. A spry 85 year-old, she lives with her husband on a sprawling property in Londonderry.
"We both went to school on this corner where we live and we've been together 62 years."
Moore’s husband has Parkinsons, Crohn’s disease, diverticulitis and two frozen shoulders. They don’t have children and she’s his sole caretaker.
"He's 109 pounds because of mal-absorption with the Parkinsons."
She stands in her kitchen, flipping through a booklet of graphs she drew to chart medications, feedings and weight gain.
"I'm keeping the date I start the chart, the hours in the day, and down below what he has to eat. and the calorie count for each meal."
For her, this is a full-time job.
"He has no mobility, so I have to take care of his bathroom needs, dress him, brush his teeth, clip his fingernails and do his hair."
About one in five of New Hampshire adults are caregivers. Most are women and most are middle-aged.
Mary Schoenley is with ServiceLink, a resource center for seniors and the disabled. She says the state is seeing more 70-year-olds monitoring their 90-year-old parents. And more elderly couples taking care of each other.
"Their own medical issues come into play," says Shoenley. "As their spouses age, so are they. They don’t have a lot of support systems. A lot of their friends may have already passed away. Many times they’re on a fixed income."
Many have too much money to qualify for Medicaid, but not enough in savings.
ServiceLink helps such people with federal and state grants for respite care. But those top out at $2000.
They assist people like Bette Moore and other caregivers to get out of the house for three hours a week.
Woody Sponougle of Rye used the grant money for help at home after he had knee surgery.
The 76-year-old takes care of his wife Judy who developed Alzheimers five years ago.
They live in a large farmhouse that's been in the family for three centuries.
As he walks on the uneven floors that ramble from one room to the next, he points to the watercolors Judy painted. One is of the beach, another of Mont Saint-Michel in Brittany.
He stares at the shelves lined with pottery from Thailand, and other relics from their travels abroad.
The house is a trove of keepsakes. But he can’t reminisce about them with his wife that way he used to.
"A lot of stuff you read tells you the same person is still in there," says Sponougle. "You want to believe that, but it’s not. The relationship is changing. It’s hard to have a relationship without communication. And the communication is disappearing."
Sue Fox is with the Center on Aging and Community Living at UNH: "It’s that loss of the person you were in love with and shared everything with."
Her research found that older caregivers felt more socially isolated than their younger counterparts. "Especially for the male caregivers," she says. "They felt their friends and family abandoned them."
That’s one of the reasons Woody Sponougle launched a monthly caregivers’ support group in Dover. His group is for men only and is the only one in the state.
"We just talk," says Sponougle. "One guy will say, sounds like you’re getting depressed, is something happening here? Or, I don’t know what the hell to do. You can admit things like that. It’s out there. You need help."
In January, a new state lawtakes effect that intends to help. It requires hospitals to notify a designated caregiver when discharging a patient. Hospitals will also have to give basic training to caregivers, some of whom give shots, intravenous fluids or set up catheters – as if they were nurses.
Doug McNutt with the AARP, says that "traditionally, people get instructions to deal with when they get home. The purpose of this is to make sure you’re actually shown how to do it, so you don’t just get home with instructions and think, oh gosh, how do I do that?"
The federal government is also looking at the issue of family caregivers.
With people living longer and having fewer children, more people will need care. But fewer will be around to provide it.
A bill before the Senate would create a FamilyCaregivingAdvisory Council. The idea is to give caregivers more resources — and more respite.
That’s important to Bette Moore, who falls into the fastest growing age group, those over 85.
She wants to keep her husband at home. But what if she falls ill?
"What do I do with him? Where do I take him? Who comes and gets him? How will they know what to do with him?"
The questions are only going to get bigger.
