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Even geriatrics workers agonize over the care of aging parents

Tuesday, February 16, 1999

By Diana Block, Post-Gazette Staff Writer

Taking care of her parents has forced Anita Lopatin into some tough decisions and delicate situations. Her father died 16 years ago, and her 92-year-old mother moved into a nursing home in November.

The everyday problems of caregiving can be as wrenching as they are common. Lopatin has many advantages as a caregiver: she is the director of OASIS, or Older Adult Service and Information System, a cultural and volunteer group for senior citizens in the Pittsburgh region. Even her connections and resources haven't made caring for her parents easy.

 
   

About the participants

 
 

"Everyone thinks I am so knowledgeable because I have so much experience. But this is my mother. That makes it completely different."

The Post-Gazette spoke with seven authorities from the aging field, asking each one how they'd handle familiar caregiving scenarios. We didn't want their professional advice. Instead, we asked what they would do for their own parents. Many of our experts had helped family members through similar situations, others offered their plans and opinions.

Here are their collected stories and words of wisdom.


How would you encourage a reluctant parent to go to the doctor or consider a hearing aid?

ANITA LOPATIN: "When your mother doesn't listen to you, you say: 'This one's for me. For my sanity. Then I don't have to worry.'

"That's how I got my mother to put [an emergency] call button in her apartment, and that's how I got her to get Meals on Wheels, so I knew she would always have something to eat. I just threw a royal fit to get those."

EUNICE BOYD: "I'd make them feel, not guilty, but that we want them to take care of themselves or to help themselves so that they will be with us longer or be with their grandchildren. I would really let them know that it was important to us and that we need them. We really need them to be OK."

JAN CARR: "I think the other thing I'd look at is why are they not wanting to go? Understand that first before you dig in and try to convince them. If they're afraid that they truly are concerned that they have a life-threatening illness then you know that they're afraid from a physical standpoint. If it's a money issue, that can be dealt with totally differently. If it's an "I don't want to be a burden, it would take time out of your day" kind of issue, you can address that, and let them know that you are available. I think you have to know why they are afraid."

JED JOHNSON: "What I always try to do is say, what are the underlying issues? Who are the key people in influencing that decision, or in making that decision? Is it your mother who has the most influence, or is it a counselor of some sort who can weigh in on the decision?"



Would you consider a nursing home for your parents? If so, what would you look for in a facility?

TONY BELL: "More no than yes. My mother, both her legs had been amputated, she has very high blood pressure, she's partially paralyzed on one side of her body. But if you say anything about taking her into a nursing home, it would be a tumultuous [family] meeting.

"A lot of [the decision] would have to do with how many participants you have to keep that person home. Because that is the key. We have 10 brothers and sisters, and I'm not even talking about the grandkids. Being from a large family helps."

JOANN FISHER GAGO: "No, not a nursing home. I would sooner alter my lifestyle to take care of them, than put them into an institution.

"The most of it would be some sort of independent living circumstance, but I don't mean a nursing home where she's assigned a bed, and eats in a congregate eating facility.

"The objectionable piece for me is the fact that people do lose their freedom. They don't get to decide when they want to eat something, when they want to sleep, when they want to bathe. They don't have the freedom to do what they want to do when they want to do it.

"[My mother] needs a lot of patience to have people understand what she wants, because of some cognitive changes. There's just not enough money in the world to have people take the time to understand individual patients enough to preserve their freedom."

LOPATIN: "I have a 92-year-old mother who just went into a nursing home. My two sisters and I had made the vow to keep her in her apartment as long as we could. When one person could no longer handle her, she herself realized that we had to do something.

"Our doctor was helpful. He said that if she moved into the hospital first, she would realize that she had to move further to get help. And that's how we did it.

"Once she got into the hospital, she could tell herself how much she needed all of the help that was available. So it made the next step very simple.

"My mother herself made all the decisions, which was tremendously helpful at that time.

"[We looked for a place that was] caring, clean, bright and dedicated to the patient."

BOYD: "You always make that commitment that you're never going to put your parents in a nursing home. You just feel like that's just not the thing to do. There were three of us, and there's just no reason. We made a really good effort at keeping my father at home.... We put him in adult day care, and he lived with my brother, and my sister and I took turns going over and taking him on weekends. We all pitched in.

"But I think there comes a time when you do it more for selfish reasons just to be able to say, 'I kept my father at home.' When it got to that point, we put our feelings aside, and we looked at what the best placement was for him.

"Even though they're in a home, you're still responsible for a large part of their care. You need to be there."

JOHNSON: "For some people, there isn't a choice of moving in with a family member. And there are people who need more intensive care.

["To choose a nursing home] I would visit not during the normal hours. I'd probably go on an evening or weekend and try to take a look around.

"For me, the most important thing is the staff and the people working there.

"You can walk into a place and sense an aura in the air, and you can really sense that there's care, compassion and community, a sense of people communicating with each other. Without that, I wouldn't feel comfortable with a loved one living there."

CHARLIE TEESE: "They would have to really require that level of care. If one of my parents were bed-bound and needed skilled care [I would].

"There's a broad range of options that I'd want to look for first. I'd want to look for home care, I'd want to look for assisted living. Particularly if cognitive impairments were involved, I'd want to look into memory support units, which allow much more freedom than a nursing home is set up to do."

CARR: "If you've done everything you really know that you can, and you have gone beyond it, perhaps, at least when that person passes away you can look back and feel comfortable that you did what you needed to do. If you end up looking back and saying, 'Gee, we should have done this,' or 'We should have done that,' the heartache is going to be with you for the rest of your life."



When one parent dies, how can you help the other parent adjust?

BOYD: "I think you can help them by allowing them to express their feelings.

"One mistake I've seen people do, and I know they do it thinking of the best interests of the one who passed, but to quickly remove things, to cover pictures up, you should never do that, unless it's the wish of the person who's dealing with it. I just think it's terrible. I think they should do it at their own pace."

JOHNSON: "My mother died quite a few years ago, and it was a difficult. And to be honest I think I would say [that] for probably about two years the roles had reversed, and my sister and I were in essence parents for my father.

"In retrospect, you realize that time heals. Allowing people to grieve, and giving them space to do that [is important].

"It's been 20 years, and only recently he's willing to interject things about her.

"One of the hardest things was [dealing with] my own needs, and having patience. I wanted to ask, 'Why can't he go through this quicker?' People heal at their own speed.

"I think it was important for him to get remarried. I think he's not the kind of person who can live on his own, and [he needed] for me to be supportive of their relationship."

GAGO: "Women particularly seem to have a unique problem because their social circles change so dramatically. Couples no longer want them. It's almost like a high school thing ... single women get ostracized very quickly.

"My mother's 75. She came from a time when, as a woman, you were somebody's daughter, somebody's girlfriend, somebody's fiancee, somebody's wife, and then you became somebody's mother, but you were never your own person. They didn't even drive. Many of these women needed to relearn that even though they didn't have someone to take care of, they had a life.

"So the actual ability and wherewithal to pull things together, it was there, but it needed to be brought out. I try to make it so that my mother knows that at every turn in the road she has a choice. And it's up to me to make sure that she knows what those choices are."

CARR: "Encourage them to tell stories, to talk about the happy times. Just let them talk and repeat and repeat. And let them know that you hurt, too. But let them know that they probably hurt more."

LOPATIN: "Just be there. Make sure they don't bury themselves at home. Make sure they stay with activities and people.

"I'll never forget, right after my father lost his sight, I found [my mother] with all the bills spread out in front of her and the checks out, and she was crying. I asked her what I could do to help, and she said: 'I'll tell you what you can do. You can turn around and leave and don't come back until I call you. Because today's the day I have to learn to do this myself.' "



What would you do if one of your parents suffered a debilitating stroke?

BELL: "The first thing you want to do is to protect them. So the first thing is to reduce any additional stress that's going to come their way."

JOHNSON: "The most important thing is rehabilitation. As quickly as you can, try to get folks in there who can assess what the current situation is and put in place exercise and adaptive supports.

"Also, deal with the emotional aspects and cognitive effects. Often there are some emotional impacts. A lot of time you only try to heal the physical affects. They may start crying, and traditionally they may be a very placid or emotionally stifled person. There may be some changes in their personality. Whether it's getting involved in a stroke support group [or something else, it's important to pay attention to these changes].

"I'm a strong believer in having people go to geriatric assessment programs. They look at a person holistically. That's really what's most important: to look at people in a systematic way."

TEESE: "The first thing I'd do is interview two or three responsible caregiving options. There are a range of at-home care giving options, there are outpatient rehabilitation clinics, and there are a number of residential options.

"I'd look for what they look for in outcomes, what costs would be incurred, and the convenience factor of getting care, because that affects how much you'll follow through.

"Then I'd interview the people who would be working. I'd want to know if I could sit in on or be part of the plan of care, because I'm suspicious of anything I'm excluded from."



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