Things can’t get much worse,” I thought as I took my father’s limp penis in my hand and tried to guide it into the small plastic urinal. “This is just not right.”
The year was 1985 and it was my weekend “on duty” with my dad, Roland Kott. My mother, Shirley, was visiting her sister and brother-in-law in Florida, taking a much needed break. In 1977, Dad had suffered a stroke that paralyzed his left side. At first, after months of inpatient and outpatient rehab, he was able to hobble around their condo with a cane, get food from the refrigerator and even talk on the telephone.
But over the years, he could do less and less, and by 1985, he needed assistance with everything. In the middle of the night, using the plastic urinal seemed preferable to heaving him into the wheelchair and onto the toilet, considering he needed to urinate three or four times a night.
As I lay on the living room couch trying to sleep, all too soon I would hear from the bedroom a muffled “Crrrnnnyyy,” his stroke-slurred version of my family nickname, Cairney. It was all I could do not to bark, “Dad! What? Again?”
Having me put his penis in the urinal was just one of many indignities Dad had to endure. In his prime, he had been a successful insurance executive and community leader in our suburban Chicago hometown. Now he was totally dependent.
Probably the worst for him was that the stroke left him aphasic, unable to make himself understood even though his mind, at least at first, was alert. What a cruel irony that he, a Northwestern University Phi Beta Kappa who had been a popular public speaker, was now forced to grunt and point. Over time, he gave up, spending most of his days in a recliner, staring at the television without bothering to change the channel.
As the years wore on, my two sisters and I began weekend stints with Dad, but Mom bore the brunt of his care. She hired a daytime caregiver so she could manage the telephone answering service they owned. But at night, she was “it.” And she refused to consider putting Dad in a nursing home. “No one will ever be able to take as good care of him as I do,” she snapped.
If I thought things couldn’t get worse, I was wrong. Mom’s decline over the past four or five years has been a lot tougher. With Dad, Mom was in charge. The grownup. The decisionmaker. Now, my sisters and I are the grownups. We find ourselves second-guessing each decision we’re forced to make.
At first after Dad died, Mom, then only 70, blossomed. A ’50s stay-at-home mom, she had run the elementary school PTA and, later, their business, with skill and style. Now, still slender and elegant, she bought new clothes and began socializing again. Every Thanksgiving and Christmas, she flew to Ft. Lauderdale to visit my aunt and uncle and went on Caribbean cruises with them.
During those years, we four “Kott girls” – Mom, my younger sisters, Judy and Susan, and I – also had fun getaways, shopping, eating in nice restaurants and giving each other facials and pedicures before bedtime.
In the early ’90s, Mom recovered quickly from hip replacement surgery. Always well organized, she signed a durable power of attorney for healthcare and a living will beforehand.
Gradually, her energy began to ebb and she was diagnosed with chronic bronchitis. After several episodes, one involving paramedics and an emergency room visit, Mom became increasingly anxious about flying to Florida, worried that she would have a dizzy spell or a coughing jag. Finally, she stopped traveling altogether. Since most of her friends had moved away or died, she rarely socialized. And as her vision began to deteriorate because of cataracts and macular degeneration, she left her condo by herself only to shop for groceries and get her hair done.
My sisters, both of whom lived nearby, stopped in as often as they could, taking her out for meals or clothes shopping. I came from Milwaukee once a month for a “pajama party”: After eating take-out fried chicken, Mom got into her pajamas and went to bed around 7 p.m. while I “partied” by reading a book or watching television.
When we celebrated her 80th birthday (“Not an age I ever thought I’d reach,” she said as we toasted her), we brought up some possibilities: senior living complexes, moving to Florida near my aunt and uncle, moving into the lower level of my Milwaukee duplex. “I want to stay in my own place as long as I can,” she said. “With assistance, of course.”
At that point, perhaps my sisters and I should have pushed harder. But we didn’t. Who were we to tell our strong-willed, sound-of-mind mother what to do?
Then she fainted at home. When she came to, she couldn’t get up. She later told us tearfully, “I thought I was just going to die there.” To get help, she began inching herself across the carpet on her back until she reached the kitchen door and began kicking it. Eventually, the neighbor across the hall, who had a key, heard her, opened the door and called the paramedics.
After a thorough workup, we got the bad news: a leaky aortic valve and chronic obstructive pulmonary disease (COPD). This was hardly a surprise, given Mom’s 50-plus years of smoking. The heart specialist suggested valve replacement surgery. Mom, a sometime Christian Scientist, refused.
A day before she was to be discharged, the social worker warned that Mom needed around-the-clock care for a few days. We selected an agency recommended by an acquaintance – hardly an in-depth search, but time was short. The first caregiver was a delight. A Nigerian immigrant in her 50s, Abby was warm and nurturing and studying for her certified nursing assistant license.
After Mom was strong enough to be on her own again, we signed her up for a “lifelines” service, where the elderly person wears a necklace or bracelet linked to a call center that dispatches paramedics if needed. The intake social worker for the service told us, “Your mother is very isolated and depressed, and it will only get worse if you daughters don’t do something.” Again, Mom refused to move.
Recovery from cataract surgery in early February 2000 necessitated another round of 24/7 caregivers. Abby wasn’t available, so the agency sent a series of weirdos, one who lit candles in the living room until midnight. Mom called Susan the next morning. “I couldn’t sleep,” she said. “I was afraid she would burn the house down.” The next arrival was 19 years old and talked on the telephone incessantly. “Sounds like she’s got boyfriend trouble,” Mom said. “But at least she’s not lighting candles.” The next one spent most of her time in the hallway on her cell phone.
The next two years passed uneventfully, with Mom leaving home mostly only for doctors’ appointments. She clung to her “I want to stay in my own home with assistance” mantra.
Then, in March 2002, she fell again. The cardiologist said she basically had no choice but aortic valve replacement. The surgeon breezed into her hospital room and handed Mom a thick binder with information about the procedure. “In six months, you’ll be a new woman,” he said cheerily.
Short of Mom dying on the operating table, just about everything that could have gone wrong did: One lung collapsed, her white blood cell count became elevated and she developed a bladder infection. When I asked a nurse how the infection occurred, she laughed, “Oh, there are lots of infections around here. We’re all walking petri dishes!”
Then Mom’s heart became arrhythmic. When this couldn’t be brought under control with drugs, the next step was “cardioversion” (think of the paddles on “ER”). To get permission for this, one morning at 6 a.m., the hospital staff called Susan, who in turn called me.
“Should we say yes?” she asked.
“I guess so,” I said foggily. “They must think it’s the best thing to do.”
Mom also had a choking incident, which prompted the staff to restrict her intake to soft solid food only – no liquids, not even water. This led to the rapid deterioration of her ability to swallow. Unable to eat, she quickly lost weight. Before the valve replacement on April 1, she weighed 112 pounds; by August, she had dropped to 92, on a 5-foot-8-inch frame. The staff put a feeding tube in her nose and down her throat; she yanked it out. So they inserted a tube in her stomach (a “g-tube”), a grueling surgery that knocked her out for several days.
Then one night, an aide forgot to put up the sides of the bed, and Mom, who was dazed from being anesthetized, shocked and medicated, tried to climb out. She fell on the hard linoleum floor, hitting her head, bruising her entire right side and detaching a muscle in her right buttocks. She also tried to pull out the g-tube. To guard against another “escape,” she was put in restraints.
Visiting her was heart-wrenching. The restraints could come off if someone stayed in the room with her, but we had to tie her up again when we left. “Please untie my arms,” she pleaded. Often, she hallucinated. “What’s that dog doing over there?” or “Your dad and I had a nice walk down the hall this afternoon” (by then, Dad had been dead for 13 years). Her vision had deteriorated so that she couldn’t see the television or read.
Even worse was being with her during her moments of lucidity. “Please take me home,” she begged. Or, “Please, can’t I just have a drink of water? My lips are chapped and I’m so thirsty.” The best we could do was wet her lips with a tiny, water-soaked sponge.
Hospital staff tossed around lots of medical expressions to describe what was happening. One of my physician friends summed it up, without smiling: “ODTAA” – one damn thing after another.
Finally, three and a half weeks later, Mom was discharged to a well-regarded sectarian rehab facility, where she spent the next two months re-learning how to sit up, walk, chew and swallow. She hated it. “I’m sure they’re keeping me here so long just to get the Medicare money,” she complained. But motivated to go home, she submitted to daily therapy sessions.
During both of Mom’s hospital rehab stays, we interacted with scores of healthcare professionals. I started carrying around a big folder labeled “Mom,” stuffed with business cards and scraps of paper with names and telephone numbers.
Some of these professionals we wanted to strangle; others we wanted to hug. Among the creeps: The cardiac liaison nurse who barked at us after we asked several questions about Mom’s condition, “Well! All of these questions are just excessive!” The cardiac surgeon who arrived one morning for a post-op checkup unshaven and reeking of alcohol. The ophthalmologist who, without looking up from his chart, growled at Judy, who had asked what might be causing Mom’s blurred vision, “I do double vision. Dr. M. does blurred vision. You’ll have to talk to him.”
The ones we wanted to hug tended to be the lower-paid staff: aides who cheerfully changed Mom’s diaper, nurses who tracked down doctors for a consultation. At the rehab facility, I once heard a patient yelling at Diane, the physical therapist, “Goddammit, I’m sick of your f—ing exercises! They aren’t doing me any good anyway!” Diane calmly replied, “Well, J., let’s just take you to the P.T. room anyway.” When I commented that it must be tough working with people who are so resistant, she laughed, saying, “If they stop complaining, I’m not doing my job.”
My sisters and I, a tough crew to intimidate, became advocates for Mom. I am a former social worker and have, as my daughter so tactfully puts it, a “strong personality.” Susan, an attorney, is a vice president of a multinational insurance company. And for 30 years, Judy taught in one of Chicago’s toughest inner city neighborhoods. I wonder what happens to families that don’t have our collective savvy.
After two months in rehab, Mom was discharged, armed with a referral to a home health agency that would provide in-home physical therapy, nursing checkups and an aide for light housekeeping. She also had prescriptions for three heart medications, high-potency vitamins and a super-strength nutritional supplement that she could drink or have put in the g-tube. We installed a toilet riser, shower grab bars and a shower bench and arranged for Abby to stay with Mom to help her get on her feet.
A month later, the idea of Mom “getting on her feet” seemed increasingly remote. Her heart was healing fine, but she had no energy. Worse, she had no appetite. “Too much food,” she said, no matter how little was on the plate. The only way we could keep her weight from continuing to drop was to give at least three tube feedings a day. We learned how to insert the supplement into the g-tube, flush it out with water and clean and re-bandage the area around the incision. Abby worked 24/7 on weekdays; my sisters and I took over on weekends. It was the Dad scene all over again.
We started looking around for some place where Mom would be cared for without us having to juggle so many case management tasks. We settled on an assisted-living facility, part of a national chain. It was near Susan’s home, so her family could help out, and they would allow us to feed Mom through the g-tube until she could eat enough on her own.
The facility was like a high-end bed-and-breakfast. It had faux-Colonial architecture, lush landscaping, a dining room “bistro” (complete with popcorn machine) and a very perky staff. We selected a two-sectioned room with bath and kitchenette.
It was expensive ($1,500 entrance fee, $135-a-day base rate, plus additional charges for services like helping Mom get dressed and to meals, none of it covered by Medicare), but at least it didn’t require the huge up-front payment of the three-stage facilities ($50,000 or more). At that point, Mom was comfortable financially because of her and Dad’s investments and because Medicare and her supplemental insurance had paid most of the hospital, doctor and rehab fees. At that daily rate, her funds would run out in four or five years, but we decided to put Mom in the best place we could afford while she was still aware of her surroundings.
Breaking the news to Mom that she would be moving in two weeks was tough. The condo wasn’t the house we kids grew up in, but Mom had lived there for more than 30 years. At first she seemed to acquiesce, but as moving day approached, she balked. “I really want to stay close to home. Can’t we look at places in town?”
The night before the move, I came down for a final “pajama party,” weeping as I navigated the Friday night traffic on I-94. I was afraid that packing up much of Mom’s life would be dreadful, but we actually had some laughs. As we sorted through furniture and household items, we came across some priceless family treasures, including the usual elementary school art projects: a misshapen pencil holder, a lumpy ashtray.
Susan and I gave Mom a g-tube feeding, helped her into her pajamas and tucked her in bed. As the door closed behind us, Susan sobbed, “She has become our child.”
At first, her new life seemed to go well. Using a four-footed cane, she walked to the bistro for lunch and dinner, and she could dress herself. This resulted in another of those “can’t get any worse” moments for me. Mom didn’t want go to outside of her room without a brassiere, but her arthritic fingers couldn’t manage the hooks. Thinking that a stretchy sports bra might be the answer, I bought one and tried to help her into it. As I struggled to maneuver her large, sagging breasts into the cups, I again thought, “This is just not right.”
Throughout all of this, Mom had maintained her sense of humor. When an inhalation therapist at the hospital asked if she had been a smoker, she replied, “Well, only for 50 years.” During a case conference at the rehab facility, the nurse conducting the meeting asked Mom to lower her trousers so we could all see the detached muscle on her buttocks. As she did, she exclaimed, “At last, a social success!”
And during the initial interview at the assisted-living place, Mom asked if she could have wine with her meals in the bistro. The marketing director said yes; in fact, the staff would serve her from her own bottle, to which Mom replied, “Oh, darn! I’ll have to upgrade from those screw-tops.”
Over the next six weeks, our relief gave way to worry and more decisionmaking. Mom still wasn’t eating much. She spent more time in bed than out of it. She fell several times. My stomach clenched each time I got a call that began, “This is Angie. I’m calling to update you about your mother.…” Mom developed pneumonia and had to be hospitalized.
I arrived at work one Tuesday morning to find a voice-mail from Susan: “Mom is having congestive heart failure. You’d better come down.” Mom was barely conscious, with labored, “death rattle” breathing. The doctor reviewed the options, which boiled down to more diagnostic tests and medications, with no assurances about the results. Or letting go.
It was an afternoon I hope never to relive. My sisters and I weighed the options, tried to envision outcomes and kept asking, “What would Mother want?” Finally, reminding ourselves of her Christian Science background, we decided she would probably not want any more invasive procedures.
We made the painful decision to stop medical treatment and replace it with “comfort care.” Also known as hospice care, this is actually a federally funded program providing a range of healthcare services to terminally ill patients. This meant that Mom would receive no more medication to cure anything, just painkillers and/or sedatives if she needed them.
And so, tears running down our cheeks, we followed as her bed was wheeled to the hospice floor of the hospital, a definite improvement over the cardiac floor. It had around-the-clock visiting hours and a family room with television, videos and a fridge stocked with snacks.
The three of us settled in for a final “pajama party.” As night fell, we told stories, sang silly family songs and asked Mom, who drifted in and out of consciousness, to share her memories of her childhood and of Dad. She was a tad confused (“Are Bobbie and Jack [her parents] still alive?”) but as funny as ever (“Are we going to have to listen to Cairney snoring tonight? If so, I’m leaving.”).
Mom slept peacefully, snoring and grunting occasionally. We hardly slept. I kept getting up to check on her breathing, the way I did when my kids were infants. I waited for her last gasp.
It never came.
In the morning, Mom was a different person. As the medications left her system, she became much more lucid and gobbled up the hospital breakfast. Then she ate the hospital lunch and made Susan go out for tacos. It seemed like every time I came into the room, she was eating.
The staff cautioned us that hospice patients sometimes rally before going into a big decline, but Mom held steady. So steady, in fact, that the staff announced she would have to leave in a few days. “She’s not dying fast enough for them,” I muttered to Judy. Mom could barely sit up, much less walk to the bistro, so returning to the assisted-living place was out. We began yet another rushed search, this time for a nursing home. We found one, also part of a national chain that was near Susan’s home and didn’t smell bad.
Upon arriving at yet another new “home,” Mom was understandably confused. She flunked the “admissions test”:
Nurse: “Shirley, what day is it today?”
Mom: “Tuesday?” (It was Thursday.)
Nurse: “Shirley, what year is it?”
Nurse: “Who is president of the United States?”
Nurse: “Who was president before him?”
Mom: “Hmmmm. I can’t remember.”
Me, laughing: “That’s because he was a Democrat. Mother doesn’t like Democrats.”
Nurse, not laughing: “Hmf.”
Later, when I asked the on-call physician for an update, she said Mom’s admitting diagnosis was end-stage COPD and dementia. I bristled at the latter. Mom, age 83, had been in six different places in the past six months. She was disoriented, not demented.
As I write this, Mom has been in the nursing home for five weeks. She stays in bed, eats and drinks very little and is on continuous oxygen. Judy, Susan and I divvied up the contents of the condo and put it up for sale.
If there are no “comfort” medications in Mom’s system, she is quite lucid. She asks about my work, my daughter’s recent wedding, my son’s high school classes. But if she is on medication, she speaks gibberish, sees things that aren’t there, plucks at her bedclothes and tries to get out of bed even though she is too weak to stand.
I give her back rubs and neck rubs and sometimes just climb into bed and hold her. Last week, as we were snuggling, she said, “Cairney, I really don’t know why I’m here.”
Me either, Mom.
Postscript: Shirley Kott died on November 7, 2002, six days short of her 84th birthday.
Carolyn Kott Washburne’s February 2001 feature, “Mind Healers,” won the National City and Regional Magazine Association’s gold award for service journalism.
How to Find Help
“One mother can raise 10 children. It takes 10 children to help a mother in her old age.” – Folk Saying
hances are, if you aren’t personally dealing with the needs of an older adult, you know someone who is. An estimated one in four Americans is the “caregiver” of an older adult, helping them with tasks ranging from cooking and shopping to administering medication.
Much of this caregiving involves difficult choices. How long can Mother stay in her own home? What is a good assisted-living facility? When should we stop aggressive medical treatment?
“Nobody wants to know this information until they need to know, and then they need to know everything,” says Gary Knippen, president of Senior Resources, which publishes a print and online directory of senior housing and healthcare resources in the Milwaukee area. “Certain situations are much more time-sensitive. You might only have 24 to 48 hours to find an assisted-living, adult daycare or skilled-nursing facility.”
Compounding the problem is that in the Milwaukee area, there are many more options than a decade ago. “When we first started, there were six homemaker companion services; now there are 50,” says Knippen. “The options are just amazing, but it can be tough to make an informed decision.”
Perhaps the toughest part is getting the elderly person to agree that it’s time for a change. Obviously, the best way to prepare for dealing with sudden illnesses and other crises is to talk to parents ahead of time about their needs and wishes and plan accordingly. “But we are often reluctant to discuss such matters – and so are they – so decisions may be postponed. This may be too late,” says Marianne Ewig, owner of September Managed Care for Older Years Inc., a private senior care management agency.
Phyllis Mensh Brostoff, co-owner of Stowell Associates, also a private care management agency, and SelecStaff Services, a home care staffing agency, says that the biggest issue for adult children is knowing when to step forward when the parent may be faltering. There are three key questions: Is my parent able to comprehend the information about the problems she is facing? Is she thinking about that problem in a way that is consistent with how she thought in the past? And is she able to communicate a decision about how to handle the problem?
“If you have to answer ‘no’ to one or more of these questions, you may well have to intervene in your parent’s decisionmaking,” says Brostoff. “If not, you need to accept the decisions she is making, even if you disagree.”
Some families are able to research care options on their own, and hospital discharge planners can often help. But as the range of resources grows ever wider, Milwaukeeans are seeking guidance from professionals. “People only know to ask for what they know how to ask for,” says Miriam Oliensis-Torres, co-owner of Geriatric Support Associates Inc., a private care management agency. “The field is so complex and there are so many ways to put services together in a package for the individual.”
Geriatric care management, either through a public social service agency or a private one, is a specialty that has developed in the past two decades. Its practitioners, typically nurses, social workers or geriatric counselors, help families understand the issues and decisions they face, identify options and recommend and arrange appropriate services and resources.
Most public care management services are free, but private agencies charge by the hour, a fee that can range from $60 to $95, depending on the training and expertise of the counselor. Some long-term care insurance policies pay for this service. As little as one or two hours of consultation can provide a workable care plan. Care managers are especially valuable for adult children who live out of state.
“Ultimately, we save people money because we keep them from wasting time,” says Oliensis-Torres. “Bad decisions can be physically, emotionally and financially costly.”
For an overview of resources, consult Senior Resources, an invaluable tool that lists all of the housing and healthcare resources for seniors in Milwaukee, Ozaukee, Washington and Waukesha counties. To get a free copy of “2001/2002 Senior Housing Options,” send $3 shipping to P.O. Box 285, Milwaukee, WI 53022-0285. The guides are also available at www.seniorresourcesonline.com.
Publicly Funded Programs
Milwaukee County Department on Aging’s ElderLink provides information, services and programs for people 60 and over (289-6874; toll-free 866-229-9695; www.milwaukeecounty.com). Family Care (formerly called the Community Options Program, then the Waiver Program) is a new way of organizing Medicaid (Title 19) funding and services. In Milwaukee County, the Family Care program’s care management organization is called Act III, which provides services such as home visits by nurses and social workers, medication management, personal care, home-delivered meals, rehabilitative services and adult day care. Most participants who have Medicaid pay nothing more for the program. Participants need to be at least 60 years old, have long-term healthcare needs and live in Milwaukee County. Similar programs exist in Ozaukee (262-284-8120), Washington (262-335-4497) and Waukesha (262-548-7848) counties. Nationally, Eldercare Locator connects callers to resources in every community in the United States (800-677-1116).
Family Caregiver Support Network/Interfaith Older Adult Programs (220-8600; 800-449-4481 for out-of-area caregivers). Through this program, more than 2,000 volunteers in Milwaukee County provide services such as transportation, shopping and friendly visiting to give caregivers relief.
Living Options Program, a United Way-supported program of the Family Caregiver Support Network (220-8600; 800-449-4481; www.living-options.org) provides information about older adult living options, including in-home care, senior housing and assisted living in the seven-county area.
Community Care Organization Inc. (385-6600; www.cco-cce.org) administers the PACE (Program of All-Inclusive Care for the Elderly) and the Wisconsin Partnership programs. Both offer alternatives to nursing home care by helping elderly people continue to live in their community. The services are covered all or in part by Medicaid and Medicare.
Curative Care Network (Milwaukee, 259-1414; Waukesha, 262-574-9147; www.curative.org). This Milwaukee-based care coordinator and operator of a senior center in Waukesha provides homemaker, shopping, personal care and dementia respite services.
LinkAges Program of Jewish Family Services (390-5800; www.jfsmilw.org) provides geriatric care management on a sliding fee scale for Jewish and non-Jewish clients in four counties.
Alzheimer’s Association of Southeastern Wisconsin (479-8800; 800-922-2413; www.alzheimers-sewi.org) is an invaluable first stop for families of those with Alzheimer’s disease.
Many agencies serve clients regionally.
Carefinders Inc., Whitefish Bay, 964-5151.
Creative Dimensions in Care, Glendale, 906-9040.
Geriatric Support Associates, Milwaukee, 964-5030; Hartford, 262-670-6164; www.geriatricsupport.com.
HealthSpan Inc., Greenfield, 529-4700. Also provides services in its own community-based residential facilities, adult family homes and in people’s own homes.
September Managed Care for Later Years, Milwaukee, 774-5800.
Stowell Associates, Shorewood, 963-2600; Waukesha, 262-521-3016; www.elderselectstaff.com. Also operates SelectStaff Inc., providing housekeepers, companions and personal care aides.
For a referral to an out-of-state geriatric care management agency, call the National Association of Professional Geriatric Care Managers (520-881-8008).
Staying in Your Own Home
It may be surprising to know that only 6.2 of Wisconsin residents over age 65 live in a skilled-nursing facility on any given day, according to Phyllis Mensh Brostoff of Stowell Associates. She adds that in Wisconsin, 28 percent of people over the age of 85 live in a skilled-nursing facility, compared to 32 percent nationally. Programs like these make it possible.
Community Options Program, a statewide program administered at the county level, assists people who need nursing home care but want to remain in their own homes. Milwaukee (289-6874), Ozaukee (262-284-8200), Washington (262-306-2222), Waukesha (262-548-7212).
Meals on Wheels (Mobile Meals) and senior meal sites. One or two nutritional meals are delivered daily, typically at midday, by volunteers. Call the Milwaukee County Senior Meal Program (289-6995) for mobile meals. For senior meal sites, call ElderLink (289-5797; 866-229-9695).
Personal emergency response system Often called a “lifeline,” this allows people living alone to get help even if they cannot get to the telephone. Users carry a button on a chain to summon designated responders who have a key to their home. There is a one-time setup fee and $35-$45 monthly fee. Call ElderLink (above).
Adult day services More than 40 centers in the four-county area offer an alternative to nursing home or other forms of institutional care. Fees range from $35 to $50 per day. Some centers offer a reduced fee based on ability to pay. Wisconsin Adult Day Services Association (877-406-0899).
Homemaker/companion services There are more than 50 such services in the four-county area providing housekeeping tasks, personal care, shopping, cooking and transportation. Families can also hire their own companion privately or through an agency. With a private placement, the family pays the companion’s liability insurance and employment taxes. Using an agency costs more per hour than hiring privately but assures you of coverage when the aide is sick, on vacation or quits. Also, the agency carries liability insurance and pays employment taxes. Services can be arranged for a few hours a day or for 24-hour coverage. Fees range from $23 to $25 per hour (often less for 24-hour coverage). Some lower-cost services are also available through community, religious or service organizations.
Home health services These state-licensed services – more than 40 in the four-county area – provide skilled nursing care, rehabilitation services and personal care in the older adult’s current living environment. Services can include intravenous therapy, wound care, ventilator management and diabetic care. Some services may be reimbursable through Medicare and Medicaid.
Where to Live
In the past, even 20 years ago, there was only one way to grow old: Stay at home or move in with a son or daughter until forced to enter a nursing home. That has all changed, and today there is a dizzying array of options: independent senior apartments and townhomes (some 78 facilities in the four-county area), federally subsidized apartments (147 facilities), continuing care retirement communities so you can “age in place” (43 facilities, with more in the planning stages), community-based residential facilities (185) and residential care apartment complexes (34). And as the over-65 population increases, so will the choices.
Ideally, the way to choose a residence is to evaluate price, quality and location. But more often, the choice is dictated by “location, location, location,” according to Phyllis Mensh Brostoff of Stowell Associates. “Is it better to choose a beautiful facility that’s halfway across town or one that’s not as nice but five minutes from the daughter’s house?” she asks. “Being able to visit easily is usually the most important factor.”
Three good resources can provide a list of all of the options in the area: Senior Resources (www.seniorresourcesonline.com), Interfaith Older Adult Programs (291-7500) and Living Options (220-8600; 800-449-4481; www.living-options.org). In addition, Interfaith makes available state reports of violations and deficiencies for licensed facilities. Also, any facility must make available a copy of its state inspection survey on request. For anyone considering residential care, ElderLink provides free pre-admission consultation.
Nursing homes Frail elderly persons may need to consider a skilled nursing facility. There are still approximately 80 stated-licensed skilled nursing facilities in the four-county area, but the number is dropping due to low Medicare and Medicaid reimbursement rates. These facilities provide long-term care for residents who require daily assistance and who need more than seven hours a week of nursing or personal care. Many also offer rehabilitative care, typically of a month or less. Some will accept Medicaid (Title 19) after a resident’s insurance or private pay funds have run out.
Current and past inspection reports and complaints are available by calling 220-8600 or 800-449-4481. But given the high rates of staff turnover in these facilities, the reports become quickly out of date. Says Miriam Oliensis-Torres of Geriatric Support Associates: “Care is only as good as the staff at that moment.”
You can also consult a national report card that rates individual nursing homes on 10 different measures, including percentage of patients who experience pain, infections and bedsores (800-633-4227; www.medicare.gov/nhcompare/home.asp).
Finding the right nursing home can be challenging. Charles Nelson, chief operating officer of the Congregational Home in Brookfield, says your first impressions are crucial. “Does facility appear to be clean and odor free? Are there staff readily available?” he asks. “Common sense things will tell you a whole lot more than any marketing brochure.”
Tips from the experts.
Get a thorough geriatric evaluation. Many area hospitals have elder services departments that work with teams, including geriatricians, nurses, social workers and other healthcare professionals. These clinics offer comprehensive geriatric assessments and care coordination.
Consider a geriatrician. For most older people, a competent family practitioner or internist can provide good primary care. But when an older person develops more chronic illnesses or diseases common in aging – falls, memory disorders, bladder incontinence and multiple medications – seek out a geriatrician.
“A geriatrician can help to direct, lead a team of multiple disciplines in order to set the goals of the care and to help the person to function at their best,” says Dr. Michael Malone, medical director of the Aurora Geriatrics Institute at Aurora Sinai Medical Center.
Take advantage of SeniorCare. This new state program, which took effect September 1, 2002, will pay for most prescription drugs. There are different levels of program participation, depending on income, and only income is considered, not assets. If prescription drugs are covered under another health insurance plan, you can still be enrolled in SeniorCare, which will coordinate coverage with your other plan. 800-657-2038; www.dhfs.state.wi.us/seniorcare/index.htm.
Monitor medications. Skilled facilities are required to have a review of patients’ medications every month by an outside consultant. Group homes are also required to have periodic reviews. “The problem is that out in the world, a patient can go to many doctors,” says Ted Tousman, a nursing home medications consultant. “They can have possibly conflicting prescriptions filled at different drugstores.” If your loved one is in a facility, ask to meet with the consultant and review the medications. If your loved one is living independently, seek a pharmacist for a consultation.
Healthcare Power of Attorney. This delegates decisionmaking about healthcare to someone who will act on the older person’s wishes if that person is incompetent. The HPOA (also called a durable power of attorney for healthcare) does not mean, as many older people fear, giving up control over their healthcare decisions. As a safeguard, an HPOA cannot be activated until two medical doctors certify that the person is really unable to make decisions.
Public health departments are excellent resources. Also, the Visiting Nurse Association of Wisconsin provides home-care visits, home-delivered meals and flu and pneumonia vaccinations at community sites. 327-2295
Nearly one out of every two persons 65 or older may spend some time in an assisted-living situation or nursing home, where costs can range from $30,000 to $60,000 annually – a quick way to deplete an older person’s life savings.
Many funding sources can be used to cover or partially offset medical costs and some long-term care expenses. Others are available to help reduce daily living expenses and increase a loved one’s ability to remain at home. ElderLink provides information on benefits and eligibility for some 15 current programs.
For legal and benefit counseling, contact the Milwaukee County Department on Aging (278-1222), which contracts with SeniorLAW to provide free benefits assistance to Milwaukee County residents 60 and older. Similar programs exist in other counties: Ozaukee (262-284-8120), Washington (262-335-4497), Waukesha (262-548-7848).
Also valuable is the booklet, “Elder Rights & Benefits 2002,” from the Coalition of Wisconsin Aging Groups Elder Law Center, Madison, 608-224-0660; www.cwag.org.
Some older adults “gift” their assets to their children to qualify for government benefits to pay for eventual nursing home care. Others gift their children with the understanding that the money be set aside for the eventual use of the older adult. Divestment procedures are complicated, so consult a financial planner or attorney.
Be careful to give correct information upon admittance to any facility. “I know of situations where people misstated what they could afford and were asked to leave the nursing home because they ran out of money,” says Patricia Bruce, co-director of the Family Caregiver Support Network. “Put all of your cards on the table.”
The Unexpected Gift
I really didn’t think I’d be able to take care of my mother. I wasn’t that nuts about her in the first place, and the more she focused on her ailments, the more I thought, “If she doesn’t die soon, I’m gonna kill her.”
“Soon” turned out to be three years from the day I became caregiver until the night we said good-bye. During that time, I saw a therapist, Mom prayed a lot and we spent long emergency room nights talking. The polyneuropathy (her nerves withered because they were compressed at the spine) took her down one finger, one foot drop at a time. In the end, she could not turn her head. I slept next to her so I could turn it for her.
Now I look at the three years as a gift. Without it, we would not have come together. We did two big things together in our lives. First, we teamed up to get me into this life. Second, we teamed up to get her out of it. We might not have been too great together in between, but by God, we did those things well. – Judy Bridges, Bay View
I’m 91 and live in my own home; my husband died 14 years ago. I see a lot of doctors and end up with all kinds of pills, but I feel well. Years ago, several doctors encouraged me to do a combination of vitamins and exercise, so I take fitness classes. I never took so much as an aspirin until I was 75 years old.
I do my laundry and I like to iron, but I just let the windows get dirty. I use the same snow shoveling service we had when we moved in here 35 years ago. The boy was 16 then; he’s a grandfather now.
Reading is my greatest solace, and I am very active in Hadassah. My children have propelled me kicking and screaming into the 21st century. I’m learning a computer and I’m finally sending e-mail.
I want to stay here in this house. I have lovely neighbors and I have grown to like them very much. I don’t like to think ahead too much. – Frema Pittelman, Fox Point
Our father, a painter, is 94; our mother died in 1963. He has been able to stay in his home because of his geriatric care agency, which works very hard to put the right kind of person with the right kind of client. He still has a depression mentality and is not used to how much things cost now. Arlene, his caretaker, understands this and looks in newspapers for bargains and sales. They have bonded over these years. He even paints on a regular basis. She makes this possible. She comes in four days a week and someone else for three. Basically what the agency has done is kept my father going now for many years. My sister and I are deeply grateful to them. – Susan Rossen, Chicago
Help, I’m Out of Town
My aunt, who has no children, was widowed in the ’70s and lived alone in her Shorewood apartment for 50 years. She is now 94. My cousin would call me with reports: She is trying to heat the apartment with burners on the stove or she fell and cut her head and bled all over the apartment.
It was time to do something, but I went into this thing totally cold. I didn’t even know what kind of money my aunt had. The agency took over, set up a doctor’s appointment for an evaluation and visited six or seven assisted-living facilities, whittling down the list so that I only had to visit two when I came up. They got her on waiting lists and arranged for her power of attorney and healthcare power of attorney.
First my aunt was in an assisted-living facility and the agency arranged for someone to come in three days a week to cook and clean, get snacks, do laundry and be a companion, all things I would be doing if I lived there. After my aunt fell, they helped find a nursing home. The agency makes monthly checks on my aunt, and if there is a care conference and I can’t get there, she attends. They get her to doctors’ appointments and give me feedback on how she is doing. The services are expensive, but I don’t know where we would be today without them. – Janet Folstad, Hot Springs Village, Arkansas
To the Rescue
When I first saw the ad on television about a woman falling and saying “I’ve fallen and I can’t get up,” I laughed with the late-night hosts who used it. Then this service became a godsend.
My father is 90 years old and lives with my sister in West Allis. She works, so he is alone for many hours. About two years ago, he began to fall and wasn’t able to get up. Last spring, we decided to get a lifeline service. Within a week, he used it, sparing him the struggle of lying on the floor for hours until my sister came home. This service has made a difference in how secure and supported our father feels, and we feel less worried about his safety. – Kathleen Neville, Shorewood
Day By Day
About a year ago, I brought my dad to live with me after my mother died. I work full time and didn’t want him home alone all day. We found a wonderful adult day care center, but he refused to play bingo or dance or socialize. He basically just wanted to sit and sleep.
We decided he would do better in a smaller setting, so he is now in a home with three other people in the heart of the town of Waterford. He either sits on the front porch watching people or on the screened-in back porch overlooking the Fox River. Because he has disabling arthritis, I was able to get him bus transportation for $2 each way. They pick him up at 7 a.m. and bring him back at 5 p.m., and I’m home within the hour. The irony is that even though it would cost more, the government would rather I put him in a nursing home than utilize cheaper resources that take more thought and attention. I’m a social worker, so my father is lucky. Not everyone knows the system and is willing to be as aggressive to find answers. – Nancy Smiegowski, Waterford
A Good Death
My mother’s death was not unexpected. She had been seriously ill for at least a year and a half and bedridden most of that time. Dr. Larsen said we could take mother to the hospital. If they pumped out her lungs, with proper medication, they could keep her alive for three or four additional weeks. Our family decided to keep her at home.
When Dr. Larsen came to sign the death certificate, he said, “Jerry, death is never very easy to handle. But as far as deaths go, this was a good one. As a doctor, I had to suggest that you take your mother to the hospital, since I know I could have kept her alive a bit longer. But I’m so pleased you chose to keep her at home. That’s where she belonged. I see so many people put a relative away to die – in hospitals, in nursing homes, even when they could handle it at home. Sure, it disrupts the household. But that’s what families are for.” – Jerry Buerer, Milwaukee and Woodruff
My father-in-law was placed in a nursing home when my mother-in-law could no longer care for him at home. She did not drive and this nursing home was so close she could walk to visit him. But there were problems with the cleanliness of the facility and the hygiene of its residents. And everything of any value was stolen from him.
When my mother-in-law needed to be in a nursing home, we were not restricted by location. This facility is beautiful, and she is always thoughtfully dressed and always, always clean. The staff treats her, her family and all visitors with an attitude of true caring. Best of all, we can leave her personal knickknacks and new blouse with her, and they will still be there the next time we visit. – Anne Sprenger, Cedarburg