Ties That Bind

Taking care of elderly parents isn't a job for the weak

There was a time, not too long ago, when Carol Neuhaus used the front of her refrigerator to display pictures drawn by her son. Now, however, she's using that space to show off a lovely image of roses in a vase, drafted by her 91-year-old mother, Leona Rosner.

Rosner drew it to mark her wedding anniversary during an art class held at Oro Valley's Desert Point--La Reserve retirement community, where she lives. She's proof that it's never too late to try something new, and she discovered she had artistic talent to boot.

Things have come full circle, Neuhaus said, and the picture represents a reversal of the women's roles as mother and daughter. Neuhaus observed that it's strange how much influence a daughter can exert over her elderly mother, after decades of having the influence flow the opposite direction.

"They're dependent on your opinion, so you do have kind of control of them," Neuhaus said. "I don't want to become her mother, but you become their source of everything."

Rosner had lived all her life in Pennsylvania when she moved to Desert Point in 2004. Contrary to the stereotype that some seniors desperately cling to the stable and familiar, Neuhaus' mother relished the opportunity to try something new.

And there was never a question Rosner would live in a retirement community like Desert Point, despite the preconceptions many people have about nursing homes. Living with her daughter wasn't an option for Rosner, because Neuhaus saw the potential for it to be isolating for mom and alienating for her.

"Women and men who are elderly need their own lives and their own opportunities to live independently," Neuhaus said. "I really don't think I would do her a favor if she did live with us, because (parents) become secluded and dependent on their daughters. I do truly believe that if adults can live on their own, then they should. I don't think in this day and age, parents living with their children is a good idea. Everybody needs privacy."

By all accounts, Rosner has flourished in the Desert Point community, making friends and maintaining her independence. According to Neuhaus, recent dinnertime topics covered by her mom and her mom's pals included the dryness of the pork chops and Paris Hilton's prison-induced regression into childhood.

Neuhaus has also grown into her environment, just up the road at the SaddleBrooke Retirement Community. Both of the women joined a mother-daughter group, which gets them mingling with others--but Neuhaus also attends meetings of a group solely for daughters who are responsible in some way for ensuring the care of their mothers.

It's called--simply enough--the Daughter Group. It's a forum for daughters to chew over the emotions and practical issues they have in their roles as caregivers.

Such groups could be an excellent tonic for the frayed nerves that can come with taking care of an elderly parent. They also touch upon a demographic revolution that's in the wings: The first wave of baby boomers is due to hit retirement age in about four years. (The U.S. Census Bureau estimates the older-than-65 set will double between 2000 and 2030, from 35 million to 72 million people.)

The elderly are not as well off as they were some years ago, with increases in health-insurance costs, longer life expectancies and the decline of pension plans. The number of seniors who live in nursing homes has decreased in the last 30 years, which the U.S. Census Bureau attributes to more and more people either living at home or living in assisted-care facilities like Desert Point. For those living independently, the help of family and friends in their everyday lives is often essential for financial and personal reasons.

Therefore, anyone who has a baby boomer parent fortunate enough to reach retirement age could face any number of scenarios, because how we take care of the elderly is very much in flux.

All the women in the Daughter Group agree that it can be a difficult experience navigating the emotions of caregiving--to say nothing about the practical aspects.

Laurie Brussel founded the Daughter Group. She and her husband, Bob, moved to SaddleBrooke from New York about five years ago with Laurie's mother, Rose Segall, who was 87 at the time. Rose had been living alone; many of her friends had died, and her link to the outside world was her hired caregiver. The move was meant to give Segall the chance to make new friends.

It started off well, but Brussel--who has a thick accent giving away her New York roots--was not happy having her mother in her home. A warm, busy and pleasantly neurotic artist who is adamant about sharing credit for the group's successes with other women, Brussel maintains an agent in New York and is involved in lots of art-related side projects in the community.

She was running herself ragged balancing all her personal commitments with the commitment to her mother, who was blind in one eye, dependent upon oxygen and was mostly wheelchair-bound.

"I had a lot of trouble dealing with my mother, who needed my care, even though I did have a caregiver," she said. "The whole situation was very overwhelming. I ended up getting sick with Bell's palsy from stress."

Resentments festered. Brussel was mourning the fact that the mother she knew was fading before her eyes, but Segall's dependency also touched off feelings of anger and guilt.

"I wasn't able to do a lot of things I wanted to do, because most of our friends moved here without their mothers," she said. "So they were out socializing and enjoying retirement, and we were schlepping my mother places. I gave up a lot of my life for my mother, and at times, it made me angry. I think a lot of the daughters feel guilty about that, but you can't help it."

So Brussel attempted to reach out, as she had done in the past, expanding a mother-daughter luncheon group that already existed in the community to include an offshoot group that brought in speakers--psychiatrists, nurses and other experts--to talk about what the daughters were going through. And, of course, the daughters also share with each other.

"I felt that the women ... need a tremendous amount of support, because if you're a caregiver, you need other people to talk to and compare notes," she said. "Even if your mother isn't in the condition that my mother was, you need someone to talk to."

Through the group, Brussel learned that she wasn't the only one who felt resentment. And after a lot of thought, she came up with a solution: Brussel and a friend, Diana Perault, rented an apartment at Desert Point for their mothers without their knowledge.

"We were sort of resenting each other, in a way," Brussel said about her mother. "Before she moved to Tucson, she had her own home and her own possessions. When she moved in my house, she just had a room. She would sit there and watch TV all day, and her caregiver would sit with her. I felt guilty, because I had to get paintings out to my publisher and my agent back in New York, and I couldn't play with her."

Segall wasn't warm to the Desert Point move right off the bat.

"My mother, at first, thought that I didn't love her, and that I wanted to kick her out," Brussel said. "I tried to explain to her that I wanted her to be with people her own age, and that she seemed bored to me. I wanted my mother back. I didn't want us to be resentful of each other."

Perault's mother, Ruth Rothery, had already lived with her for 11 years when the family moved to Tucson from Massachusetts. She and Brussel struck up a parallel friendship (with parallel Boston and New York accents) to the one struck up by their mothers, who were about the same age. Their mothers also died six months apart.

It was difficult to have her mother move to Desert Point, Perault said. But Rothery had become dependent, and Perault and her husband had no life as a result. She didn't anticipate the feelings of resentment that bubbled up, because she and her mother were always so close.

"She was getting to the point where we couldn't go anywhere at all," Perault said. "She needed to be with other people. She was able to get out and do things with other people, but she just didn't want to. Laurie was going through the same thing with her mom."

Rothery supported the move with some hesitation, Perault said, because she had gone through a similar experience with her husband's mother.

"My father's mother moved in when my mother was pregnant with me, and she never moved out," she said. "She was with them until she ended up going into a hospice situation. I can remember before I got married, my mother almost hated her (mother-in-law), because she really never had time with her own husband. I think it's just something you go through if you have a parent living with you."

So the mothers went to Desert Point together. As it turns out, both were happy there. They made friends quickly and were fortunate to live just up the road from their daughters, should they need anything.

"They were there until they passed," Perault said. "And it was so nice, because they had each other."

In a way that might not seem intuitive to some, having their parents move elsewhere actually brought them closer together, Perault said.

"It gets really tough, you know, having them there, because they get very demanding and expect you to be there 24/7," she said. "There was so much suffocation that I just felt bitter about the whole thing for a while. Having her move, it was like we got our mothers back. Instead of having someone you had to watch over every minute, we were kind of back to the point of mother and daughter, rather than nurse and mother."

Brussel's mother died in 2004. She had willed herself to live long enough so she could attend her grandson's wedding back in New York, walking down the aisle without the usual oxygen tank.

"That's all she wanted to do, was to travel back to New York and be at his wedding," Brussel said. "We got her to New York, and we got her with her oxygen, and we arranged her oxygen every step of the way. I dressed her and undressed her, and made sure she was OK. It was my own child's wedding, and I sweated bullets to do this.

"But that's how my mother was. She was such a strong, determined lady. I think I learned a tremendous amount from her as a role model."

As a tribute to her mom, Brussel is continuing to lead the Daughter Group. She also teaches the art classes that opened the door to a whole new world for Rosner.

Marilyn Nevins' mother is 92, and she lives with her daughter, after moving from Kansas 3 1/2 years ago. Nevins joined the group after Brussel, her neighbor, invited her.

"I thought it was important for both my mother and I that I join the support group to see how other people were handling it, and get some support for myself," she said. Everyone's situation is different, but Nevins wanted to get feedback on issues she was experiencing. She had also hoped that her mother could meet women her age during the joint luncheons, but that hasn't materialized.

Her mom, who is almost totally blind and suffers from dementia and severe osteoporosis, doesn't have a caregiver, so Nevins provides all her support. Her mother mostly stays in her room.

"It takes its toll, because you're pretty well housebound a lot of the time," she said. "It is difficult."

Someone comes forward every so often to allow Nevins and her husband to get away. She has four siblings in other states, but, according to her, they're not "willing or able" to help out. That sounds like a bitter pill to swallow, and Nevins admitted that sometimes she gets depressed.

"It'll be going fine for a long time, and then it will just kind of hit you that they're always there," she said. "There's a lot of joy--my mother and I have always been very close--but you pay a toll to always have to be there. We can get away some during the day, but we can't go anyplace at night, because she's on some medications that have to be given at particular times.

"You're entering your retirement years, the years that you think that you'll be able to travel, to see your children and things like that. We can't do any of that."

Meanwhile, Nevins' mother talks nonstop about moving back to Kansas to be closer to her favorite granddaughter, who has periodically visited with the great-grandchildren. Nevins said she's told her mother she can move to an assisted-living facility, but it has to be in Arizona. Her mom makes a fuss--and there's no reasoning with a woman who suffers from dementia, Nevins said.

"I don't blame her--she's always said she'd never live with any of her children," Nevins said. "I wouldn't want to, either. But this is the reality, mother--this is how it is."

Like the Neuhaus and the other women, Nevins has also noticed how the relationship to her mother has changed.

"I have all the power, and I don't like that, and she doesn't like that," she said. "You know, you might want all the power in some other situation, but not in this. It's an unfair power."

Nevins reiterated that it's not easy seeing your mother grow old.

"Now my friends see her, and she's not the mother I knew," she said. "They don't get to know the mother I knew; they get to know the person who asks what time it is five times while we're having dinner.

"I know my mother doesn't have a very good life right now. She can't see; she hurts. But I'm powerless to do a whole lot to improve it."

Because she was closest to her mother out of all her siblings, Nevins volunteered to take care of her. Like the other women in the group, she had words of warning for other children who are considering taking the same step. They all said they didn't anticipate how difficult a job caregiving can be.

"People really need to think this out," she said. "Think of how many years it could be."

And no matter what, it's important to have connections with other people who are in the same boat, the women agreed.

"Before you meet someone else, you think you're the Wicked Witch of the West," Perault said. "You just get these awful feelings, and I kept thinking, 'Oh my God, I'm just such a terrible person.'

"But as it ended up with the Daughter Group, you could talk to someone else and say, 'I'm having these feelings. I love my mother to death, but she's driving me out of my mind. Am I an awful person?' We found out that we were normal, that these are normal feelings to have and that we're not awful people. It's because you love your parents so much that you're torturing yourself."

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