"It Shouldn't Be This Way" - Long-Term Care

If you haven’t already, it is likely that you will one day find yourself caring for an aging, sick relative. Once upon a time, this kind of caregiving was done at home and indeed, when I was a child, many of my friends and playmates helped with that care. “I can’t go to swimming today, Ronni,” they would say. “I have to take care of gramps while mom goes shopping.”

Today, for a variety of reasons, home care is frequently impossible, or impractical, so you will need some form of professional long-term care. And it will not be easy:

“[Long-term care] is the country’s best-kept embarrassing secret. Almost every adult in this country will either enter a nursing home or have to deal with a parent or other relative who does. Few people, however…are prepared to deal with a system that is seriously flawed.”

Those are the opening words of a book by brother and sister, Robert L. Kane, M.D. and Joan C. West - It Shouldn’t Be This Way: The Failure of Long-Term Care - which tells the story of their quest for appropriate, quality care for their mother over the final three years of her life following a stroke.

I met Dr. Kane recently in St. Paul where I shared a panel with him during a taping of a PBS series titled, Life (Part 2). He holds an endowed chair in long-term care and aging at the University of Minnesota School of Public Health. His sister is an educator, currently an adjunct professor at St. Joseph’s College in Patchogue, New York.

Their story is harrowing in the practicalities of choosing appropriate facilities as their mother’s health declined. Assisted-living has as many definitions (and regulations) as there are states, and there is no mechanism, even in the age of the internet, to properly assess the suitability of facilities, especially as they are operated by chains of for-profit corporations:

“Most assisted living facilities have a sales office. Although the sales people were friendly enough, we knew to approach them with the same caution one employs in a used-car lot. They have a product to sell. No assurances are too great, no claims too exaggerated.

“Because family, not the resident, is often the real customer, many assisted-living facilities invest heavily in the look and feel of the common areas. This is what people see when they come in. Little of it is ever used by the residents, however. For them the salient aspects are rooms where they live, the food, and the staff.”

Following each chapter, Kane and West provide an excellent checklist of important points to remember, “Lessons,” which in the case of choosing an assisted-living facility include:

• Make sure you see the actual room promised, not just the common space or some showroom.
• The term assisted living has come to mean anything a vendor wants it to…In general, you get what you pay for, but the formula is never that simple.
• Assisted-living facilities will continue to look to family members to intervene in crises and to provide services.
• Most assisted-living facilities do not view themselves as health care providers and are very likely to respond to a resident’s health problems by sending the person to the emergency room.

When your relative can no longer live at all on his or her own, a nursing home is the next step. They are an entirely different animal from assisted-living facilities with fixed rules and regulations, but can still vary widely in quality. Some of Kane’s and West’s “Lessons” from that chapter:

• It is essential to shop carefully for the right nursing home…Try the nose test: If it smells like feces and urine, get out. If it smells like disinfectant, beware; to much may be sacrified to achieve cleanliness. But if it smells like chicken soup, this could be the place
• Informal caregiving, the jargon for family care…never stops, even after a person enters a nursing home.
• Nursing home residents need active family advocates. Like it or not, squeaky wheels do get the grease.
• No matter how “out of it” a person with dementia seems, moments of lucidity are possible.

This and the rest of the knowledge and advice in this book are hard won. Even Ms. West and her brother, a respected gerontologist with a worldwide reputation in his field whose mother had substantial financial resources often felt nearly defeated by the long-term care system in the United States. Their experience can help you navigate the labyrinths.

While recounting their mother’s story, Kane and West cover rehabilitation facilities, assisted living, dementia units, nursing homes, doctors and hospitals and informal (that’s you) care. They are clear-eyed, informative, compassionate and angry about the state of long-term care.

“No organized voice speaks for long-term care consumers and their families. Most nonprofit advocacy groups are organized around a specific disease…The time has come to create a national organization to build a groundswell of concern and attention for long-term care,” they write.

Good long-term care makes a big difference in the lives of those who need it and their families. Good care does not happen by accident. It must be actively pursued and it can, say the authors, be done:

“Universal long-term care is feasible. Other countries have developed universal programs that cover long-term care. Some use public monies; others use a combination of public and private money.”

I read a lot of books on various aspects of aging. Few are worth the effort due to too many feel-good platitudes and not much new thinking or information. It Shouldn't Be This Way is extraordinarily worthwhile, filled with hard facts, compassion, understanding, instruction and good ideas we will all need one day for as the writers report:

“…40 percent of all adults in this country who live to age sixty-five will enter a nursing home before they die. Even more will use some other form of long-term care. Few people, however…are prepared to deal with a system that is seriously flawed.”

When one of the most respected gerontologists in the world – someone who can pull rank to speak directly with physicians and directors at long-term care facilities – cannot get through the bureaucratic maze without superhuman effort, what will the rest of us encounter? Dr. Kane’s and Ms. West’s guidelines are an indispensable guide.

[EDITORIAL NOTE: Dr. Kane has graciously agreed to answer any questions readers may have about long-term care. Please leave them in the comments below. The cutoff date is 31 March and I will post a followup-story with Dr. Kane’s answers shortly thereafter. Please keep in mind that he cannot comment on specific health conditions or facilities.]

UPDATE: Questions are now closed.

Comments

[MrsR]

Hi Ronni,
I'm a long time reader but infrequent commenter. Thank you for today's post in particular. I just wish to make you aware of non profit organizations in the US and Canada that are dedicated to supporting the family caregivers throughout their journey, including the research of long term care facilities. In Canada I lead a provincial organization that does just that. We realize that family caregivers often lack the time and energy to navigate the health care system due to the responsibilities of caregiving. My organization and similar ones in the US are also working fast and furiously to influence public policy in order to gain more resources for family caregivers.
Thank you for all you do Ronni, I learn something almost every time I read your blog.
Sharon Reashore, LL.B., EPC
www.caregiversns.org

[Alexandra]

I look forward to reading Dr. Kane's book. I was lucky enough to be able to interrupt my life to care for elderly parents. Before I decided on home care with hospice for the last six months of my mom's life, I visited nursing facilities in the USA, but had also been in excellent nursing homes in Sweden and France. I believe no one can give a person better care than a loving family member. Home care is not an option for everyone, it is true. My mother was fortunate we were able to accommodate to her needs, and I am so glad I chose home care, such a rewarding experience! (I wrote a blog about it, as you know.) Mom passed away in November, at 97. Slowly I am becoming militant about this choice as friends share their own experiences with supposedly excellent assisted living facilities. Thank you for alerting readers to this problem.

[Cop Car]

Dr. Kane--What is your experience with the Long-Term Care Ombudsman program that is Federally mandated to be in place in each state of the US? Although the ombudsman's jurisdiction is only within state-licensed facilities, I should think that the program would be having a distinct impact.

Does the statement, "...40 percent of all adults in this country who live to age sixty-five will enter a nursing home before they die." include those who use a nursing home in the short term (for a few weeks following surgery, for example)?

Comment: The statement, “Because family, not the resident, is often the real customer...." reflects unethical behavior. If the resident is not considered to be the "real customer", their best interests are not being served.

[Rain]

My experience with assisted living has been through parents-- so far. My mother and father died before they required such care and that was a blessing as both would have hated it even when it's good. My husband's father had a few days in a nursing home for end of life care but he and my mother in law lived several years in an assisted living facility where you got housekeeping, social events, and 3 meals a day provided.

We ate with them at various times and it was fairly good cafeteria food, individual tables where you were served sometimes and other times went to a buffet for your food. They liked it.

When he reached the end stages of pancreatic cancer, they moved to another facility closer to us. It had caring people, nice (in their case one bedroom) apartments, activities planned, a bus, pretty good food whenever we visited for a meal.

As she needed more care, the charges were increased to cover the added services. When she fell and shattered her hip, had to go to the hospital (for a hip replacement which even though she was 95, it was her only chance to live), she went to a nursing home. It was one where my husband could frequently stop by conveniently before or after work.

In my opinion, for such facilities, visiting hours should always be whenever family shows up if the place is good. It's the family's one way to be sure the care is adequate.

For someone who does not have children, I think they should make arrangements with friends to be there for them or vice versa because I do believe family or someone needs to be watching out for those who are too weak to look out for themselves.

Some places are very nice, do their best but not all. We were fortunate in the care she received but nursing homes are not pleasant places because the people are all severely disabled in one way or another. In most, there is no privacy, not your own space beyond a dresser and the bed you are on. It's definitely a harder time than when assisted living is enough. As they say-- old age is not for sissies.

[Bonnie]

I am 68 years old, cared for my mother who died at 81 in a hospital long term care unit, my 96 year old mother in law who was in a foster care home then an assisted living facility with my father in law who died six months later. I am currently guardian for my 106 year old aunt who is in a nursing home 400 miles from me and am caretaker at home for my 70 year old husband who has Parkinson's and dementia. I have researched facilities in various cities and towns, hired private home care of various skills, used Hospice and public non-profit health care providers as well as home health for-profit providers.

I agree that any patient absolutely requires an advocate since illness prevents them making informed decisions.

I have told my children that I don't want any of it, because none is very good, and certainly not a dignified way to live or die. I asked them to sign me up for parachute lessons and if I forget to pull the ripcord, so be it. They don't take me seriously, but don't know the answer to this pitiful situation.

What this advanced society has been able to do is prolong life, but has not found a suitable, acceptable way to say: ENOUGH.
Instead we can keep folks alive with every kind of pill and treatment, and make anyone who thinks that is not the correct approach is called callous, uncaring, inhuman, un-Christian, and a jillion other things.

Hmmmm, I seem to have a bit of anger myself.

[Rusti]

Your blog was given to me by a friend. It is wonderful and is an inspiration to me. I started my blog as a result of my need to talk to my family and the family of others about care. I am by training a Nurse (Duke 1957--yep 50 years ago. I have spent many years evaluating care as a member of a survey team for Joint Commission, and owned my own consulting firm. I feel so strongly that my family must know my feelings, my values, and thoughts. Not that they are all pure, but that somewhere in them there is a little window to enlightment. I would like to communicate with you directly. Thanks for your leadership.

[Georjina]

Thank You for the information, I've found myself in the position of needing long term assisted care for my mother. What makes it even harder is I'm an only child, there are no siblings to compare notes with or do some of the investigation required. It's tiring, frustrating and can make one very, very angry with a system that is touted as 'the best in the world' which is sorely lacking.

[Darlene]

My 82nd birthday is rapidly approaching and the fear of having to go to a nursing home is ever present. My children all live in a different state and they just visited me. I told them I would not burden them with having to care for me should I become disabled. My daughter still has children at home and my son works 12 hour days. However, I would like to go to a nursing home near them should the need arise so they could be on-site advocates. My question for Dr. Kane is: "What are the ramifications financially of moving from one state to another after becoming disabled?" I am low income and cannot pay for more than 3 months care in a nursing home so would need public assistance. If I am able I will take the parachute lessons that Bonnie kids her children with and will fail to pull the ripcord. Yes, if possible, I will end my life my way before entering a nursing home.
Thank you, Dr. Kane for answering questions and I will certainly get your book and am looking forward to becoming better educated on this issue.

[Joe Angelelli]

Thanks Ronni for bringing attention to this topic.

When I was a research professor at Brown several years ago I gave a talk at the Gerontological Society of America annual meeting and mentioned at the end the hopeful sign of the "culture change" movement in long-term care. Bob was in the audience, and we had a spirited exchange during the Q&A when he called it "ideological" and I challenged him to do more observational research about it (It was a great theatre!) His wife Rosalie and her colleagues have subsequently done excellent research on the promise of the Green House approach -- which I wrote about in an editorial in The Gerontologist (opens as .pdf). I'm really looking forward to reading this book about his personal experience.

I'm wondering if he would share his perspective about this thing they call "culture change" with the blogging world? What does he see as the single biggest barrier to getting more organizations on board with it? Is there a public policy response to help move it beyond the early adopters?

[Mage]

My husband and I are taking care of an old friend. Four of us have formed a sort of caretaking committee to take care of our friend Duck....he stutters and Dick became Duck one day. One of these friends is ill. One travels. Another lives out of state. My husband has his power of attorney and medical power of attorney, so we are the ones who are there with him every day.

There are millions of elders who, like Duck, have only their Social Security and Medical. Single men or women, gay or straight, who find themselves with Alzheimers or dementia also find themselves helplessly unknowing.

If Duck hadn't had friends to take him to the hospital when he had a thrombosis in his brain, anything could have happened that day. And again when he fell later at home, we are all so grateful that he remembered how to use the speed dial on his phone. Again hospitalized, and this time placed in long term nursing care, he can't be put on the street but is unwanted.

He's so like many others....dapper, dressed perfectly, charming, smiling, and unable to remember anything that happened during his day. We care. We are there every day. We follow every suggestion, and because they don't have a bed for him there, we have been on hold waiting for a final decision for two months.

There are so many like me writing blogs everywhere. In Open Diary I can name ~Voyageur, Georgette, and Redcat as just three. Blevins wrote about her experiences here, in Ice Cream Dementia, and her words touched us all.

If there are any suggestions on how just friends can help an older friend when dementia or Alzheimers has taken their lives away, we would appreciate it. What preparations could be made in advance for the single person who has no family or few friends remaining?

Thanks.

[Kay Dennison]

This is my worst nightmare and has been for quite some time not a day goies by that I don't worry about wshat you've said here. Nobody takes care of me but me and for various reasons, I doubt that will change. I've seen some of the abuses you;'ve mentioned and I'm scared as hell.

[Cop Car]

For those who are seriously opposed to going to a nursing home, who wish make the most basic of decisions for themselves, there is the Hemlock Society.

Membership in the Hemlock Society is now handled by the
Compassion and Choices web site. I am not a member if the society, know no one who is; but, I certainly support their "mission".

[Joared]

This book's contents as you describe it sounds excellent. I am intimately familiar with the issues of patients and caregivers in the settings you describe, both personally and professionally.

I have seen first hand the well-meaning good intentions of some non-family member patient advocates, sometimes strangers to the patient, sometimes members of some "senior" group, who inject themselves into trying to "help" patients but end up doing just the opposite. Are there any enforceable criteria all individuals who choose to do so must or should meet in order to be such an informal helper?

I would highly recommend caregivers with a loved one requiring skilled nursing care seek admission as a community patient to the skilled facility of an existing retirement community as a first preference. Be sure to find out what your costs will be once Medicare Part A benefits are denied which can be less than 100 days.

"The squeeky wheel gets the grease" is an admonition I've given for years. Empowering patients whenever possible to know as much as they can about their own condition, needs, do as much for themselves as they are able, AND overcoming the reticence of many to speak up for themselves should be facilitated, often more than once on the same subject if necessary.

Unless the patient is in an exceptional placement, a caregiver visiting on a frequent (daily in some places) basis is recommended; get to know the staff.

I look forward to reading the Kane and West book. This is certainly a long overdue topic for updating, and this is the first book of which I'm been aware that sounds as though it addresses the topic, since one I came across many years ago, used to selectively distribute a paperback edition, or loan out for reading, but the references are now outdated.

[Peggy]

I have 2 primary questions:
First, I too am single without children but still quite young. What can I do to prepare for these circumstances? What other suggestions do you have for single, childless people?

Second, what do you suggest as to ways we can influence policy? Is this primarily something we should be speaking to our state legislators or federal legislators about?

Peggy