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Bostonia: The Alumni Magazine of Boston University

Summer 2009 Table of Contents

Our Parents’ Keepers

How to take the best care of the people who took care of you

| From Alumni Books | By Cynthia K. Buccini

Paula Span’s new book follows several families as they struggle to care for aging parents. Photo by Joshua Paul

At a certain point in her forties, Paula Span noticed that the conversation among her friends had changed: it was less about growing toddlers, day care, and pediatricians, and more about aging parents, assisted living, and geriatricians. When Span lost her mother to cancer, the subject became even more pressing — she worried about how her father, now in his eighties, would cope on his own. “It began to seem like my generation of baby boomers was coming up on this life-cycle event that few of us were prepared for,” says Span (COM’71).

A former reporter at the Washington Post and now a contributing writer for the Washington Post Magazine, Span spent two and a half years researching the topic and interviewing subjects for a book she hopes will fill in the gaps. In When the Time Comes: Families with Aging Parents Share Their Struggles and Solutions (Springboard Press, 2009), she follows several families as they grapple with caregiving for elderly parents who can no longer live independently. “I wanted to encounter them when they were still facing the problem of what do we do about Mom, where should she live, what can we afford, how does she feel about it,” says Span, who also teaches journalism at Columbia University and writes the The New Old Age blog for the New York Times Web site. “And I wanted to talk to the parents to see what they thought about making changes and how they determined which ones were acceptable and which weren’t.”

Span says her book is not a how-to manual, but rather a “survey of the landscape” as painted by the experiences of several families. “I’m just hoping that this is helpful and supportive and gives us a clue as to what lies ahead,” she says, “because there’s not a dress rehearsal for this.”

Span spoke with Bostonia about the families in her book, the decisions they made, and why The Waltons truly was fiction.

Bostonia: You spoke with adult children and their aging parents. What did your elderly subjects tell you?
First of all, almost nobody wants to move. They want to stay in their homes or in the community, and that has consequences. One reason that the average stay in assisted living is fairly brief — twenty-seven months — is that people wait until they are quite frail and have multiple health problems before they do move.

So I learned that they want to live independently, they want to stay in their homes, not facilities, if they can, and they tend to move when something forces it: a fall, a health crisis. They don’t want their children dictating to them how to proceed, but they do take their advice seriously, at least in my very limited sample. It is a discussion.

You also found that they don’t necessarily want to move in with their children when they can no longer live alone.
I think we’ve all watched too many episodes of The Waltons. We envision a hazy golden past when generations lived together in mysterious harmony. And we berate ourselves because we think that we are too selfish or too geographically dispersed or too careerist or too feminist and that we don’t take care of our seniors the way we used to.

The direction over seventy years has been for elderly parents to not move in with their children as they used to. I found it really fascinating that two economists, one at Michigan and one now at Dartmouth, went through 100 years of census data and could pinpoint almost exactly when this historic shift happened: at the 1940 census, which is when the first Social Security checks were mailed out. And they controlled for many variables — was this because women were working? But it’s simple economics: as a nation, once we gave elderly people the financial ability to maintain their own households, they took it.

Assisted living sounds like a good option for elderly people who can’t manage on their own, but what are the limitations?
This was the great hope in the nineties, when the industry really mushroomed and overbuilt. It was a perfectly fine idea — it still is. But people move in when they are in their eighties, usually. They have multiple health problems. They’re taking multiple medications. They’ve stayed at home as long as they possibly could, so that by the time they’ve moved into assisted living, it’s probably wise to see it as more of a way station than as the last home that someone will need.

I still think assisted living is a good option, especially when it’s part of a continuing-care community, with an independent living component, assisted living, and maybe a nursing home. But it has limitations, and I think often families don’t realize that. At some point, if Mom is incontinent and can’t manage it herself, if her dementia increases, those kinds of things will lead to a discussion with the director of a facility, who will say, we can’t take care of your mother by ourselves any more. And then your choice is either hire aides in assisted living, which is a very expensive option, or a nursing home.

And nobody wants to live in a nursing home.
You sometimes hear children say, “I promised my mother I’d never put her in a nursing home.” But it’s not a promise that you can really make, because there can come a time when there is not a better option — unless you are an extremely wealthy person who can have home-care workers around the clock. If your parent can no longer get out of bed and has to be turned every two hours to prevent bedsores, which are dangerous and painful, no single individual can be on the clock twenty-four hours a day. And at some point, having round-the-clock aides becomes an expense that most families can’t shoulder.

Plus, nursing homes are the only government safety net. The only government program that will pay for long-term care is Medicaid, which is meant for the poor. But it’s very simple for even a middle-class person to become poor, to spend down your assets, if you’re paying the average $7,000 a month for a nursing home. So you want to have the nursing home option, because for very sick people, where else can they go?

It sounds as though there is no single solution when it comes to caring for an aging parent.
That’s the reality. In the end, these decisions are highly individual and they change over time. And I think people have to make their peace with the fact that solutions are imperfect and they are not always long-lasting and everybody tends to grope through this period hoping for the best and doing the best they can. And sometimes that’s all you can do.

You Asked, We Answered
Readers took advantage of our invitation to ask Paula Span about caring for an elderly parent. Here are some of those questions, along with Span's responses.

QMy mother is 82 years old. Although fairly healthy for her age, she is beginning to falter. She lives in NYC, and I live in San Francisco. I am exploring the possibility of helping her control her finances so that her bills get paid on time, but it seems overwhelming, especially being so far away from her. Any advice would be much appreciated. — Cinna Hunter (SAR'97)

AI think you’re wise to be thinking about this before a crisis hits. Many cities have chore services and bill-paying services for the elderly; some operate through local social service agencies and some involve private companies.

But a better answer for worried long-distance children is to consider hiring a geriatric care manager. This is a fairly new profession whose members are usually social workers with additional training. You pay them by the hour for whatever service you need: to assess the older person’s needs and capacities, to help arrange home care or bill-paying services, or to visit the client every few weeks and serve as your local eyes and ears. If a GCM has been working in a community for a number of years, she will know the reputable facilities and companies.

GCM’s don’t come cheap, but neither does flying cross-country every few weeks. You can learn more through the National Association of Professional Geriatric Care Managers at www.caremanager.org

QMy mother died one and a half years ago. My parents were married for 44 years, and my father, who took care of my mother because she had multiple sclerosis, remains very depressed. He has memory problems he does not acknowledge, he is lonely, and the house is basically a shrine to my mother. He has tried counseling and medication, neither of which have improved his situation.

I am at a loss as to how to help my father and would appreciate any advice you have. — Noah Starer (SSW'94)

AA sad situation, Noah. I doubt it’s unusual to mourn a spouse for a year and a half. Would your father agree to attend a bereavement group?

Clinical depression, if that’s what he has, is not a normal part of aging; it’s a treatable condition. At any age, however, many people who suffer from depression need to try a variety of medications and therapeutic approaches before they find a combination that works for them. And dosages and therapy approaches effective for younger people don’t necessarily work for the elderly. I hope you can persuade him to see a geriatric psychiatrist.

Beyond that, remaining in one’s home — the option most older people prefer or insist on — can sometimes be quite isolating. Perhaps your father would agree to attend an adult day program a few days a week. These centers, most of which accept participants with chronic health problems including cognitive impairment, provide social stimulation, hot meals, health monitoring and medication dispensing, a range of activities, and transportation, yet the older person goes home to familiar surroundings at the end of the day. The prices are affordable compared to assisted living or nursing homes, and a variety of financial help is available through Medicaid, state and federal programs, and the Veteran’s Administration. Contact the National Adult Day Services Association to learn about programs near your father.

QMy sister helps to care for my parents, who live in their home in New Jersey. My father had a stroke and has an aide that comes twice a week; my mother has had heart surgery. I have a husband and child, and can only go to see them twice a year because of work and financial limitations.

I frequently feel guilty about not being there for them, and my sister is often angry about my absence in the lives of my parents. Can I get some advice from you about my dilemma? — Imani (STH'88)

AIt’s usually the case that one person becomes an elderly parent’s primary caregiver, most often a daughter or daughter-in-law, and it’s not unusual for that person to grow resentful about the workload she’s shouldered, especially if siblings don’t seem to be doing their share. I assume you keep in touch with your folks by phone and mail, but if traveling to see them is a problem, let’s think about other ways you can help.

Perhaps you can make some of the calls she now makes to insurance companies or Medicare. Perhaps you can take over online bill-paying, or make calls to local social service agencies, such as adult day programs and Meals on Wheels, to locate additional help. What if you arranged to spend some of your vacation days in New Jersey with your parents, so your sister can get a break and get away? Caregivers need respite; even a few days off-duty can make a difference.

And money always helps. You mentioned financial limitations, widespread these days. But if you can come up with, say, $40 a week, that might be enough to have that aide come a couple more hours, and that might make a difference.

So have a talk with your sister, and ask her what she needs, what specific tasks you might be able to take on. Sometimes, just calling and listening to her vent might be a useful service.

QWhat advice do you have for professionals that work with families who are caring for an aging parent?— Tala Kerton (SSW’08)

AFirst, I’ll say a big thank you. Our society is going to need a lot more people with skills in geriatrics and eldercare, from home care workers to geriatricians to home modification experts.

I hope you will launch and sustain some serious outreach programs to let a still-not-very-aware public know who you are, what you do, how you can help. And I hope you’ll help get the conversations started, the conversations nobody particularly wants to have, about what our parents want and how we will respond when they need help. This is not a hypothetical discussion — two-thirds of older people will need long-term care at some point — but the time to start thinking and learning and talking is when it still feels hypothetical.

QWhat are your thoughts on the purchase of long-term care insurance?— James Greenquist (SED’53)

AVery few Americans, fewer than 10 percent of seniors, have availed themselves of this option. It’s expensive. Some policies are so restrictive that they won’t supply the kind of coverage we need. And prospective buyers worry about insurance companies’ ability or willingness to pay benefits 15 or 20 years down the road.

But because the costs of long-term care are so steep, and because the only government safety net for now is Medicaid (which requires spending nearly all your money and which mostly provides nursing home care), I do have a long-term care policy, purchased through my credit union.

If you decide to investigate a policy, look for one that will provide money to use for care in the setting of your choice: your home, assisted or independent living, a nursing home. Make sure it covers dementia care as well as physical disabilities. Look for inflation riders that allow you to buy more coverage if costs keep rising.

You’ll find some reliable guidance from the National Association of Insurance Commissioners at naic.org

QI appreciate your insight and comments in Bostonia. My question to you is with regards to the final stage - my mother needs a nursing home because she can no longer get out of bed and has to be turned every few hours. She lives at home with aides but due to turn over and vacation needs my sister and I are having to fill in which is most difficult. My mother runs out of all her cash in 6 months, therapist says keep her at home as long as possible. Only other asset she owns is her home. Do we have to sell the house and not have any estate for grandchildren even if she moves from primary resident to nursing home? My sister and I share living in the house 1/2 time tending to her need. We are torn. What do you recommend?— Carrie McIndoe (MET’86)

AFirst, if your mother has been diagnosed with a terminal disease, please call a local hospice organization now. Don’t wait. Hospice is a wonderful service for those at the end of life, and it helps patients at home or the place they call home – which can include a nursing home. Medicare pays for it, and your stressed family will get knowledgeable support in keeping your mother comfortable and cared for. So many families wait until a loved one is within days of death before they call hospice. Nothing can make this time easy, but hospice can make it easier, on all of you.

If this is not a terminal illness, however, you probably need to begin planning for nursing home care now. Many nursing facilities require that residents enter as private-pay patients, who pay the monthly tab (it will be shockingly high) for several months, before they qualify for Medicaid. If your mother spends all her money on home care, she won’t have any left when she needs a facility, and many facilities will not accept her.

An elder law attorney can help you figure out Medicaid, whether she can keep her house, and other legal issues. You can find one through the National Academy of Elder Law Attorneys (www.naela.org), but I’d also recommend getting referrals from people in your community.

QPaula, thank you for a well-written book about something most of us end up thinking about eventually! You say that while aging parents don't want their children to tell them what to do, they do seriously consider their kids' advice. When a crisis arises, though, there's not always time for reflection and advice-gathering -- a decision has to be made, promptly, and not everybody is happy with it. In the families you followed, how did they they deal with any post-crisis second-guessing by other family members or the parents themselves?— Fawn Fitter (COM’88)

AAnother reason to strive to have these conversations before a crisis hits! But nothing makes caregivers crazier than handling a difficult situation, then hearing from siblings and others about what they should have done.

If you find that your family unity, or your ability to handle the next crisis, is seriously imperiled, I’d try to set up a conference call or a visit involving all parties – including your parents -- to try to talk through these differences. A geriatric care manager or family therapist might make a good mediator and arbiter, if you feel you need one.

And maybe some of these second-guessers can get more involved in their parents’ care. Even from a distance, they can take on the bill-paying, the inevitable insurance snafus, the follow-up calls to physicians or labs. Sharing the responsibility can make it less burdensome on one individual, and might create a team whose members are less likely to snipe from the sidelines.

QI'm 90, male, vet, alone, no health problems, no medications, no relatives, busy on living. What steps should I take if I shouldn't live forever?— Fred Blackstone, Jr.

ACongratulations on being a healthy and active nonagenarian, Fred. If you are not planning on immortality, I’d get in touch with your local Veterans Affairs offices, both federal and state, so that you are connected to their systems, can take advantage of services you’re eligible for, and know where to turn should you need help. Party on!

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On 17 August 2009 at 2:49 PM, Karen Thaw (CAS'68) wrote:

I will have to read your book. Somehow, our family is at a loss as to how to treat my mother's dementia. Just two months ago, she had good days and bad. Now, when I speak with her by phone, she argues with me about what day of the week it is and what is the date. I know that once we embark on the proper facility to send my mother, she will begin spending down her assets. This is the crux of the matter. My 92-year old mother will not spend down her assets. We set her up with an aid (3x per week) but she fired her. This routine was repeated again. We basically leave my mother alone now. She is still physically able to get to her meals (in an independent living facility) and can still dress herself. Either mental illness or dementia will put her in a facility where there are other persons suffering from similar problems. My mother will not be able to tolerate this because she takes great care in associating with people she likes. So, the end all is that my mother is independent although she has a form of dementia. And we cannot convince her to spend her money to help herself. From the previous comments, I will begin by hiring a geriatric care manager, but my mother may refuse to see her. She is suspicious that we will place her in a nursing home-type facility. There is nothing we can do unless we are willing to spend our own monies to help my mother. As long as she controls her assets, she can do as she pleases. And many social workers will not help unless the person in need is willing to cooperate. It seems that we have nothing else to do except wait for an intervention, i.e. someone on the premises of her retirement community contacts us. We have had many discussions with my mother and she uses her dementia to undo us.

On 12 August 2009 at 10:50 AM, Carol Rodman (SPH) wrote:

Your article misses the point for many, probably for the large majority of elders and their adult children who are not wealthy, do not have a milion dollar house to sell for assisted living & privately hired home health aide costs, and believe that this high-end option is anot a good one, just a delaying tactic for 2 to 3 years of an elder's decline. Most of all, it misses the real issue for those of us who believe that home with supportive care and public financing for it, as in many European countries, is a better option for most middle class elders and families caring for their loved ones. Programs like PACE and SCO need expansion for working & middle class elders. We need to develop more options like these for elders living in public and non-profit, as well as private housing, because real social security during the frail years is about coordinated, comprehensive supportive care, not based on prior earnings and current income, but about a society's standards for the old,! frail and infirm.

On 11 August 2009 at 5:09 PM, Allison (CAS'99) wrote:

I am caring for an elderly parent now and would love if someone from PACE in Boston could contact me so I could learn more about this. Many thanks.

On 14 July 2009 at 1:11 PM, Aimee Kindorf (SPH'06) wrote:

I also work for a PACE program (Program of All-Inclusive Care for the Elderly) here in Boston. What is at the heart of PACE programs is exactly what Span found through her surveys, and is of no surprise, that seniors have a desire to remain in their homes. PACE programs help to put in place services that make this possible in a way that can prolong an elders time at home and if possible, avoid nursing home placement. PACE programs can offer a long lasting solution for participants and families who are willing to participate in the mutually designed plan of care. PACE programs are available to seniors in all income categories - either at no cost to Medicaid eligible or through a buy-in option for seniors who exceed Medicaid income and asset rules. I also hope that more providers, families and seniors come to learn of the value and benefit of PACE and the program continues to expand in this country.

On 13 July 2009 at 8:29 PM, John L. Dunham (STH'56) wrote:

Enjoyed your article. After serving for 15 years on Otterbein Homes Bd. of Trustees[6CCRC's],I observed that the time to seek a SNF is when the elder is unable to cope with two of the ADL's. Attempts to care for the elder in their own home by the spouse ends up with damage to the spouse and perhaps to the elder themselves. The need for mobility is especially difficult when one tries to help the other up and down many times a day. This is never an easy step. Keep up the good work. Rev. John L. dunham

On 12 July 2009 at 6:53 PM, Karen Klein (LAW'82) wrote:

Paula, Great artcile in the alumni magazine. I would love to talk with you further about synergies with what we are doing at Silver Planet's site, www.silverplanet.com, a content rich site that encourages positive aging for the 55+ generation. You may enjoy our caregiving blogs, including "A Good Enough Daughter", found at http://www.silverplanet.com/blog/good-enough-daughter. We are very interested in the options you are exploring. Let's talk (kklein@silverplanet.com)

On 8 July 2009 at 10:30 PM, Marcie Franzone (SAR'79) wrote:

No question, just a comment. I work for a PACE program (Program of All-inclusive Care for the Elderly) in Schenectady, NY. It is truly the way of the future, and addresses your findings that the elderly want to stay in their own homes and communities. Our program does a wonderful job of providing a total network of support, from medical care and up to four aide visits per day to socializing in our day center to ongoing therapy. I understand that start up costs is a major reason why PACE programs have not expanded at a faster rate. Hopefully programs like this will one day be available everywhere.

On 8 July 2009 at 2:29 PM, Barbara Atwood (CFA'72) wrote:

Hi Paula - I really don't have a question, but I wanted to let you know the choices I made and am still making for my 83 yr old mother. I live in Boston and widowed mother lives at Leisure World in Silver Spring MD. I had to take over her care when she fell into a depression and stopped taking care of herself. I had to go down to Maryland, get her power of attorney and find a caregiver for her so she could stay at home. It was difficult managing things long distance and this past Christmas I had to go back down there when she stopped walking and chose to stay in bed. Mentally, she was still depressed which was exacerbated by the drugs she was taking that were prescribed by the doctors at the Leisure World Medical Center. I decided to take her to a doctor who practices functional medicine which looks for the root cause of problems in the body rather than just treating the symptoms. You see, my mother has no chronic diseases - NONE; no heart disease, no COPD (although those problems run rampant in my family), no cancers, no diabetes (although she loved to eat sweets, especially chocolate), not even arthritis, although she does have an "essential tremor" in her hands (it's not Parkinsons - she been tested). She seems to have some dementia, but it's not Alzheimers-like. The new doctor is an advocate of Dr Mark Hymen's teaching on the Ultramind solution to mental problems which says that if you adjust what's happening in your body, you mind can be healed. The new doctor took many, many blood tests, saliva and stool tests and concluded that my mother's thyroid was off and that she had a lot of inflamation in her body. He put her on a restricted diet, weaned her off the drugs the other doctor's! had given her and has her on a thyroid medicine and many vitamin and mineral suppliments. After 3 months, she seems to be improving but it will take time. I looked into placing her temporarily into a residential assisted living home. These homes are usually owned and run by registered nurses and they can accommodate anywhere from 4 to 16 residents. I worked with an agency called Loving Decisions and saw several good places, but, in the end, I decided that it was best for my mother to stay in her condo assisted by her caregiver because I could be more assured that she would be on the restricted diet and would be given the many supplements as prescribed. In addition, she is now getting physical therapy to rebuild her muscles so she can walk again. I decided to take this approach because my mother is so healthly physically, but I think other elderly parents could be helped by this approach. Oh, by-the-way, my mother's old internist at Leisure World decided he would no longer see her because she is now on a thyroid pill. I wish us "boomers" would be more medical advocates for our aging parents. Taking the non-traditional medical approach is VERY expensive and it should be more available to more people so the elderly can have a better quality of life in their later years. There are so many parts of this testimony I didn't add for the sake of time, but I'm glad you have written your book. As my mother improves, I would like to be able to let people know that there is hope that their elderly loved ones can be with them longer and in better health.

On 7 July 2009 at 8:51 PM Ronnee Greenstein (SAR’72) wrote:

This is incredibly timely. Last week my mother moved to my home to live with my husband and me due to her decreasing physical abilities and middle stage of dementia.She did not want this but it is the only safe option (she was living in a senior apartment with home care aides 7 hours/day) as we await an opening in a nearby nursing home.

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