FINALIST, SARTON WOMEN'S BOOK AWARD, 2016
Interview with Laura Katz Olson
1. How does a person’s relationship with their parent change when they become a caregiver?
The nature of the change depends on a number of factors, including the earlier rapport between the two individuals, how functionally and cognitively impaired the parent has become, the financial situation, and the extent of reliance on the adult child. Full time care, for example, takes a toll and can interfere with a previously warm relationship. Even a long-distance caregiver, such as I had been, may find every visit filled with constant tasks that have to be dealt with, thereby allowing few moments for relational time. And, the more you are forced to “parent your parent” the role reversal often leads to an array of emotions that can intrude on the relationship: feelings of anger, sadness, anxiety, fear, stress and the like. Further, the previous bond can be impaired because of a sense of loss, that the parent is no longer there for you. It is important to obtain as much outside assistance as possible in order to maintain a loving bond and mutual respect. However, that is challenging to accomplish if the frail aged parent is in a dire financial situation.
2. What have you learned from witnessing the experience of a person who requires the care of others?
As a participant observer, I have acquired a keener sense of the needs of the elderly and their adult children as well as the failings of our public programs that are supposed to serve them. Let me mention just of few. For one, too many legislators have used the concept of “unhealthy lifestyle choices” as an excuse for limiting or withholding assistance to low-income families. My mother had been a strong, athletic person, consumed only vegetarian and organic food, never smoked and rarely drank alcohol. Nevertheless, she was still vulnerable to the ravages of Parkinson’s disease, blindness and eventually total reliance on others. Watching my mother’s inevitable decline reinforced my view that, as a society, we must not “blame the victim” in our approach to medical and supportive services. Indeed, we are all at risk of dependency on others for our basic needs.
Another important discovery was that home care is not always an option for the low-income aged with multiple chronic conditions. As with many others studying elder care, I assumed that the recent movement away from placement in nursing homes, under the Medicaid program, would be advantageous for older people and their families alike. I soon realized that in many states, there isn’t sufficient at-home assistance for someone needing ongoing care, even if that person reached the head of the waiting line. An adult child or spouse would have to fill in the huge gaps, with devastating effects on their financial, physical and emotional well-being. My mother, who required significant help, received the maximum allowable under Florida’s plan, only ten hours a week; she would have received roughly the same limited amount in Pennsylvania.
I had also underestimated the problems and complications of long-distance caregiving. Issues tend to crop up on a daily basis, some of which require immediate attention. And the frustration of dealing with agency rules and regulations is more challenging from afar. At the same time, when a caregiver is not readily available, her imagination can blow up an incident out of all proportion to the actual problem. Importantly, an on-site advocate is essential for frail elders contending with hospitals, nursing homes, home care agencies and other establishments.
In addition, I had been aware, through my studies, that eligibility for public benefits, along with their type, quantity and duration, generally depends on where you live. What I had not fully appreciated are the complications in housing, medical insurance, supportive services, and the like when moving an older person from one state into another. Catch-22 situations abound, rendering the aged and their caregivers vulnerable and powerless.
On the positive side, it has been my privilege to meet a number of decent, dedicated professional caregivers. Despite the fact that they are overworked and underpaid, they do the best that they can with the limited resources available to them. It would have been impossible for me to have maintained my long-distance caregiving role for so long without the support and dedication of mom’s aide in Florida.
3. Now that you have undertaken elder care through both scholarship and personal experience, can you speak to the differing perspectives of a scholar and of one who has lived experience?
Academic work on elder care is, by necessity, analytical, rigorous and detached, providing us with frameworks from which we can understand larger societal concerns. My initial research had been motivated by a drive to figure out why the U.S. had such disconnect between the massive government funding for age-based services and what older people actually receive. That led to a fuller grasp of the commercial stakeholders, such as the nursing home industry, which siphon off a considerable percentage of taxpayer money allocated for long-term care. I’ve also written about the challenges faced by indigent families in their attempt to secure social services, especially through Medicaid. My studies also explored the intersections of race, gender, and class on the situation of frail older people and their caregivers.
Regardless, the lived experience adds nuances, emotional comprehension, and depth to an intellectual appreciation of social issues. When confronted with the need to find care for my mother, the paucity of assistance for the poor was no longer theoretical: a person I loved was in perilous circumstances. Likewise, I found that facts and figures do not do full justice to the frustrating reality of contending with ongoing bureaucratic obstacles to receiving adequate help.
In another example, government and academic studies of nursing home deficiencies do not (and possibly cannot) depict the full sense of what it is like for a vulnerable individual to actually encounter deplorable and even abusive conditions. It was eye-opening to personally witness the negligent and appalling treatment of my mother in two Florida facilities; nothing could have prepared me for the indifference to her physical and cognitive needs, unpalatable meals, disdain for government regulations, and slapdash approach to patient care generally. In my view, the lived experience can strengthen scholarly endeavors and vice-versa.
4. You mention in Elder Care Journey that even your expertise could not prepare you for the many obstacles in finding care for your mother. Are there resources available for people in such a position who lack your level of knowledge?
One of my more disconcerting discoveries is that although there are numerous government HELP lines and websites, nearly all of them proved inadequate to the task of helping elders and their caregivers secure government-supported hands-on home care. The local Area Agencies on Aging are supposed to be the foremost vehicles for organizing and delivering elder services but they do not, for the most part, offer direct care assistance. In my experience with two of these county organizations, they were not even sufficiently helpful as a resource.
Another source, the “Medicare.gov Nursing Home Compare” web site, grades nursing homes from one to five stars. However, as discussed in my book, it is of limited value, especially for low-income elders. The higher rated facilities are generally not available to Medicaid recipients: none of the five star facilities in my area were willing to admit my mother unless she paid privately, out-of-pocket for a year or two. State Medicaid websites, which are more useful resources, often supply a list of available programs and their eligibility criteria. In addition, the Family Caregiver Alliance (www.caregiver.org) has somewhat valuable state-by-state contacts.
For people with adequate funds, there are ample websites by commercial and non-profit entities that assist people in evaluating residential options, locating alternative elder care services and providing general information on a range of topics related to long-term care. I have also found a number of excellent on-line support groups and advice sites, including one for caregivers of older people with Alzheimer’s disease (http://www.alzheimersreadingroom.com/). For the most part, however, elders and their families—especially those with low income--are pretty much on their own to piece it all together.
5. How has your attitude toward government policy regarding elder care (HIPAA privacy rules, for example) changed?
My outlook has altered in a number of respects. For example, despite its well-intentioned goals of privacy and patient rights, the 1996 Health Insurance Portability and Accountability Act (HIPAA), proved to be a constant stumbling block in fulfilling my role as an effective long-distance caregiver. It hampered my efforts to obtain essential information about my mother’s medical condition, secure benefits for her, and complete other tasks on her behalf, even in urgent situations. Although the legislation guarantees patients full access to their hospital, nursing home and other medical records, I was surprised at the difficulty in exercising this right, the relatively high fees charged, and the often illegible hand-written information furnished.
Another revelation that caught me unawares is the unwillingness of the Social Security Administration (SSA) and the Veterans Administration (VA) to acknowledge Power of Attorney, despite its acceptance everywhere else. SSA’s firm requirement that its agents can only address concerns and resolve issues with the actual recipient, no matter how mentally or physically disabled, hampers an adult child’s attempt to assist his or her frail older parent. It certainly impeded me.
I had also underestimated the grievous effects and onerous burdens of certain policies on individual lives. The sheer volume of needless documentation and paperwork, specific to each benefit application and recertification, demonstrates a blithe disregard for the low-income elderly and their already overwhelmed caregivers. The extent of suspicion over cheating and the degree of rigidity and harshness in agency rules, even when the applicant is a frail elderly person reliant on others, still continues to astound me. At the same time, the laxity in some policy areas, such as in regulating assisted living facilities and home health agencies, is equally disquieting. My mother endured sorely inadequate conditions in what had appeared on the surface to be a lovely senior care home, and substandard physical therapy from several government-supported home health firms. And, I hadn’t expected my sense of helplessness when confronting inflexible rules or in attempting to address deficient services.
Finally, I am even more convinced now that we should have far greater shared responsibility for our care-dependent older population. Consequently, the U.S. should enact a mandatory social insurance program for long-term care. As I suggest in Elder Care Journey, such a universal single-payer system would provide a broad risk pool; ensure sustainable per capita financing; de-stigmatize the receipt of benefits; eliminate the pauperization of middle-class households; and drastically reduce income verification requirements, recertification, and other burdensome procedures. It would also equalize access and benefits, irrespective of household income or where one resides.
It’s The Family That Must Adjust
From: www.alzheimersreadingroom.com
May 4, 2016
It’s been three years since my mother, Dorothy Katz, entered Gracedale Nursing Home, a facility that is a few miles from where I live in Pennsylvania. It had been difficult for me as a long-distance caregiver. My visits to her in Florida had been frenetic and tense as I attempted to take care of her financial and service needs while also coping with her increasing frailty and demanding personality. But after she settled into Gracedale, our previously stressed relationship mellowed and we began to enjoy each other’s company. I even discovered for the first time that mom had a wicked sense of humor and we sometimes giggled together like two young girls. She started to open up, treating me to nuggets about her childhood as well as married life with my father.
All too soon everything changed as Dottie slowly descended into the world of Alzheimer’s. Eventually, there were only glimpses of the loving mother I had grown to appreciate anew and now she even displayed periodic spurts of rage. Her lifelong optimism and buoyancy (I had always called her Pollyanna) alternated with bouts of despair. At first it left me frustrated and dejected as I never knew who was going to greet me when I entered her room each day.
Nonetheless, I became fascinated with the mental changes and learned to accept her fluctuating moods more dispassionately. My ongoing observations have led me to recognize the multi-dimensional nature of the dementia patient’s brain and how real each of these personality traits is to the person herself. Not only has it made it easier for me to accept my mother’s ever-changing demeanor, including her hallucinations, but also to cope with them more lovingly and effectively.
Let me share some of the roller coaster ride mom and I have taken together since the onset of Alzheimer’s disease. I’m sure many caregivers will relate to these experiences, allowing them to know that they are not alone.
Dottie is known for regularly bursting into song. One particular obnoxious drinking tune is encouraged by the nursing aides; although they think it is cute I usually grimace (mom rarely ever drank liquor in her life). But she also sings Broadway musicals, rock and roll, or whatever comes to mind, often making up the words as she goes along. Although she has a pleasant voice, initially I would become embarrassed by her loud impromptu performances. These days, I just join in, the two of us in duet as I wheel her down the hall.
At other times she threatens to hit everyone, including me, with a big stick. An aide doesn’t bring her breakfast fast enough: “I’m going to hit her with a big stick,” she says with a grin. Dottie’s water is not cold enough—again the big stick. She imagines that I am late one morning: “I’m going to hit you with a big stick,” she said.
“Mom, you can’t go around telling people that you are going to hurt them,” I told her each time, gritting my teeth in annoyance.
She would just smirk at me. “I’m going to hit them even harder,” was her usual response.
I discovered a more effective way of dealing with the situation: “I’ll get a bigger stick than you,” I told her playfully. That made her laugh and defused her rage.
Vacation time. My husband and I decided to take a two-week vacation in Florida, where we bicycled, played tennis, ran on the beach, swam and enjoyed relaxing together over dinner (he is the caretaker of his 101-year old mother). I hired an outside aide to stay with Dottie in the nursing homes for three hours each morning to keep her company. I called each day to check on her. After a week, however, mom’s friendly attitude turned vicious.
“I never want to see you again,” she spat out over and over again. “Don’t bother coming home! Stay on your vacation forever.” I had to remind myself that she was just scared, that she felt all alone in this world.
When I returned, she continued the hateful words, pushing me from her. Despite my deep hurt, I reacted by putting my arms around her and repeating “You are safe now. I am home. Whenever I leave I will always return to you.” By the third day she felt secure enough to forget that I had been gone.
One day Dottie seemed particularly pensive, her eyes closed, head cocked to the side and a slight smile on her face. Leaning forward, I blurted out in eager anticipation, “Mom, what are you thinking about.” It’s a question that had been lingering in my mind for months but I dared not ask. What does a blind woman with Parkinson’s disease, who has limited ability for activities, movement or social interaction, think about all day? Is she desperately lonely? Does she ruminate about her past? Are there precious moments that fill her head with joy?
Without hesitation she responded, “Birthday cake. I’ve been thinking about birthday cake.”
Her reactions continued to surprise, and sometimes amuse me. Dottie is tested regularly because she is on blood thinners. One day, a nurse walked into her room and proceeded to draw blood. As she was doing so I said, “Mom, they keep you quite healthy here.”
Without missing a beat she retorted, “That’s too bad for you. I’ll be your burden for a very long time.”
Then there are the weeping babies, meowing cats, barking dogs and unfed fish. In the beginning I tried to set her straight. “Mom, I can’t hear it,” I said when she complained that there was a baby sobbing in the next room.
“Put on your hearing aids” she said. “Somebody should feed the poor kid.” Her agitation spiraled noticeably. The pained look on her face made me realize that she did hear a baby cry—that was her reality. And she wanted to be useful.
I had to adjust. The next time she complained about a cat in need I said, “Okay. I’ll get some food so that you can feed it.” She gave me a huge satisfied smile.
Indeed, she always wanted to help, to feel competent and less dependent on others. “I baked you your favorite pie,” she would say. “I went to the store last night to get the peaches for it.” Or “You don’t have to bother washing my clothes this week. I did it myself.” Or “I decided to go out for dinner last night. I found a great restaurant around the corner. You should try it.”
Dottie was clearly oblivious to her incapacities. “Mom, I said. Your niece is getting married next month. I’ll tell you all about the wedding when I return.”
“Aren’t I going with you?” she asked matter-of-factly. “By the way, I’ll need a new dress and shoes since I’m sure it will be a fancy affair.”
“Everyone wants you to be there and I’d love to take you,” I responded carefully. “But it’s not possible.”
“I’m going,” she said defiantly. “I’ll find someone else to take me. You’re a bad daughter.” It broke my heart.
I found that a person with dementia, despite her mental limitations, can be quite guileful and fully capable of provoking guilt trips. Dottie frequently made statements such as, “The minute you leave, all of the aides are mean to me.” And, “Whenever you go away I never get fed.”
And, of course, empathy is a one-way street, something that is hard to get used to. “Mom, I had such an upset stomach last night. I didn’t sleep at all.”
“Is my breakfast here yet?” she responded. “I’m hungry.” A person with dementia requires as much empathy as family caregivers can muster but can’t expect compassion and understanding in return. I have to reach her where she is at any particular moment and not where I want her to be.
Dorothy Katz will turn ninety-three May 2016. For the most part, mom has faced her deteriorating physical and mental condition with acceptance and seems at ease with the multiple facets of her new, volatile self. It is me, her daughter, who is contending with the sense of loss, agonizing over ongoing matters, and regularly attempting to find new ways of relating to her. Yes, Alzheimer’s patently takes its toll on family caregivers, but, ultimately, they may grow from the experience.
Success may be as simple as focusing on two areas
McKnight's Senior Living
By Lois A. Bowers
May 31, 2016
Staffing and food. That's where senior living operators should focus their efforts, according to Laura Katz Olson. Especially staffing.
Olson possesses much knowledge accumulated through years of research in public policy and aging — she holds a Ph.D. and is a political science professor at Lehigh University. But the aforementioned advice comes from the personal experience she has gained as a caregiver for her mother, Dorothy, who has Parkinson's disease and deteriorated vision.
“The driving force of quality care is the staff,” Olson says. Communities that commit to excellence by providing relatively high wages, great healthcare benefits and opportunities for advancement for staff members, she adds, are more likely to be rewarded with minimal turnover, which means that staff members are more likely to be familiar with resident needs and care about meeting them.
Olson sees it at the nursing home where her mother lives. “Any one of them who has worked in another place tells me this is the best place to work in,” she says, noting that several staff members have family members who work or live there.
The dining experience is another way that assisted living communities and skilled nursing facilities can differentiate themselves, Olson says — an important point because meals can be the highlight in the daily life of an elderly person with declining physical abilities. Where her mother lives, “they go over backwards to let them have what they really would like to eat,” whether it be vegetarian meals, as her mother prefers, or something that's not on the menu. “The food is delicious,” Olson says. “I'm absolutely astounded at how good it is.”
Another lesson Olson says she has learned the hard way? Look beyond looks. An assisted living community where her mother previously lived “was one of the most beautiful places I had ever seen,” she says. The people who operated the small facility, however, “focused on keeping people in bed so they didn't have to do anything,” Olson says.
The place her mother lives now, her third senior living residence, is an older nursing home operated by the county in which it is located and, although it probably wouldn't win a beauty contest, it is “as good as you're going to get in an institution the United States,” she says. The nursing home holds care-planning meetings with family members every six weeks — something others are supposed to do but often don't, Olson says, and activities are “constant and interesting.”
Olson knows that there are high-quality assisted living communities out there — for-profit, not-for-profit, multisite chains and single-site facilities. Her 101-year-old mother-in-law is receiving great care and participating in the many activities at the community where she lives, she says. And Olson believes that operators that receive government funding would benefit from more of it.
But the professor also knows that many of her opinions and suggestions might not be shared or appreciated by some senior living owners and operators. More assisted living inspections are needed in some states, for instance, she believes, although she also maintains that senior living leaders should be focused on more than simply meeting minimum standards.
And she is not a fan of private equity ownership. “The model of a private equity firm is to extract as much money as you can out of whatever they have, and then sell it at a profit, and to me, that's antithetical to good care,” Olson says.
And she believes that a mandatory, government-run insurance program for long-term services and supports is needed to broaden the risk pool. “In my view, from everything I've read, I don't see how anybody could still be proposing private insurance,” Olson says. Issues related to private long-term care insurance, in her opinion, are that it is not affordable for the average person, is not very useful because of qualifying criteria and elimination periods, and as a whole will be unable to meet the needs of a growing population of adults who are living longer.
Whether or not you agree with Olson, however, you would be smart to take her seriously. You can be certain that policymakers and your potential residents and their family members will. Many of them will be reading her latest book, “Elder Care Journey: A View from the Front Lines,” which details her experience, the issues she has encountered and the solutions she proposes.
Lois A. Bowers is senior editor of McKnight's Senior Living. Contact her at lois.bowers@mcknights.com. Follow her on Twitter @Lois_Bowers.