Wednesday, May 10, 2017
“What are your daily visiting hours?” was one of the many questions I asked the intake person in a New York (NY) nursing home (NH) office last year before my late wife was admitted. I was told that I could visit each day between 10:30 a.m. and 8:30 p.m. I was also given several booklets explaining patient rights, administrative policies, and various NH routines, but nothing in any booklet discussed visiting hours. Those same visiting hours, 10:30 a.m-8:30 p.m., were also posted by the entrance desk where visitors had to sign in and out. Twice I came at around 10:15 a.m. and each time I was asked to wait in the lobby until 10:30 because I was “too early.”
Imagine my surprise when I recently learned that I should have been told that I could visit my wife anytime, day or night, as long as she wanted me to be there. Every NH in the United States that accepts Medicare/Medicaid funding, I now know, must allow immediate family members 24/7 access to visit residents.
Section 483.10 (j) (1), subsection vii of the Federal Nursing Home Reform Act of 1987 guarantees visitation rights at any time for immediate family members of NH residents. Whereas the law does state that non-immediate family visits may be subject to “reasonable” restrictions, "immediate family or other relatives are not subject to visiting hour limitations or other restrictions not imposed by the resident."
In 2009, The Center for Medicare and Medicaid services (CMS) attempted to clarify the meaning of subsection vii of Section 483.10 (j) (1) in “Guidance to Surveyors of Long Term Care Facilities.” CMS provided “Interpretive Guidelines,” emphasizing that “Immediate family or other relatives are not subject to visiting hour limitations or other restrictions not imposed by the resident." CMS further provided one question that NHs must be able to answer in the affirmative to be in compliance with federal law: “Do residents and family members know that they are able to visit 24-hours a day?"
CMS also provided revised guidelines that became effective in November 2016 that broadened NH visitation policies. They said, in addition to the provision allowing unrestricted access by immediate family members, NH residents now also have the right to “have visitors at any time, as long as you want to see them, and as long as the visit doesn't interfere with the provision of care and privacy rights of other residents." Similarly, the “Visitors” section of Medicare’s “Skilled nursing facility rights” document now states: “You have the right to spend private time with visitors at any reasonable hour. The SNF must permit your family to visit you at any time, as long as you want to see them.”
New York State NH Regulations
Once I learned about federal law pertaining to 24/7 access to residents by immediate family members, I went online to access the New York State Department of Health regulations for NHs. Surely, I thought, NY had sought a waiver from federal law as it pertains to family visits in NHs; otherwise, why would I have been told to restrict my visits (at one of the best NHs in our state) to between the hours of 10:30 a.m. to 8:30 p.m.
What I discovered was alarming. NY Health Department regulations mirror the federal visitation guidelines in all but one respect: there is absolutely no mention that NHs must provide immediate unrestricted access for immediate family members. The NY visitation regulation states that residents may have visitors, with their consent, “subject to reasonable restrictions and [their] right to deny or withdraw consent at any time.”
The NY Health Department issues a document, “What to Look For When Visiting a Nursing Home,” to help consumers select a good NH for their loved ones. In the section, “Following is a list of some policies to check,” visitation rights are only mentioned in one phrase: “visiting hours should cover a 10-hour period including 2 meal times,” but there is no mention of checking to ensure that the NH provides unrestricted access by immediate family members.
I then contacted the Commissioner’s office of the NY Health Department to ask one question: Has NY sought a waiver from the federal government regarding NH visitation rights, or is NY simply out of compliance with federal law?
I ended up being referred to and speaking with thirteen different individuals in the NY Health Department before one official was finally able to answer my question. She said, “of course NY is in compliance with federal law.” When I noted that the subsection on unrestricted visitation rights by immediate family members does not appear in the state guidelines, I was again assured that the state was in compliance despite no mention of unrestricted access.
When I then related my personal experience, I was told that I could file a complaint! When I asked if the official thought a clarification should be added to the Health Department guidelines, she said that was unnecessary. Incredulously, to me at least, she said that NHs should make visitation guidelines clear but there is no state regulation requiring them to do so, and there is no state requirement for NHs to have anything about unrestricted visitation rights in writing.
Telephone Survey of 10% of NHs in NY
I then decided to contact NHs directly to find out if the situation at my late wife’s NH was unique or if many other NY NHs were also not informing consumers of their right to unrestricted access for family members. I went online again at the NY Health Department website to find a list of all 624 NHs in New York.
I called every tenth NH on each list, 63 NHs altogether, providing me with a good sample size of 10% of all the NHs in NY. (I actually ended up calling 70 NHs because 7 NHs did not answer, even though all calls were made on Saturday or Sunday afternoons between noon and 4 p.m.). I also made sure that each NH was Medicare/Medicaid certified and therefore subject to the Federal Nursing Home Act regulations allowing unrestricted visitations for immediate family of residents.
I asked one question at each NH, and if not given complete information I asked a second question. My first question was, “Can you please tell me your visiting hours?” If told that the NH didn’t have any set hours, hours were 24/7, I can come anytime, or a similar response, I simply said “terrific” or “that’s excellent,” said thank you, and hung up the phone. If given a set time for visits, eg, from 8 a.m. to 8 p.m., I then waited several seconds to see if they would say something like, “unless you are an immediate family member.” None asked me that question, but a few did hang up and I had to call them back! After that pause, or call back, I asked a second question: “If I place my mother at your NH, can I visit her on the way to work an hour before visiting hours begin (whatever time they gave me, I’d pick an hour earlier; so if they said visiting hours begin at 8, I’d ask if I could visit at 7.) I asked the same about visiting on my way home from work at an hour after the limit time they provided.
Results were very disappointing. Given pre-existing federal law and recent updates, every Medicare/Medicaid eligible NH in every state in 2017 should respond the same way when asked about visiting hours for residents. The policy in every NH should be that there are no set times to visit; all visitors may come anytime, 24/7. Immediate family members should face no restrictions, but all other visitors may be asked to wait temporarily if a provision of care or privacy rights of other residents should apply at that time.
Of the 63 NHs I contacted, only 24 responded correctly to my first question by saying that I can visit anytime. When I asked my second question at the other 39 NHs, responses were of five types: ignorant, encouraging, discouraging, very discouraging, or absolutely out of compliance.
Ignorant responses were variations of “I’m not sure” and when asked to check they would return to the phone and continue to say they weren’t sure. Encouraging responses were like this: “Yes, but the doors are locked before and after those times, so just ring the bell and someone will let you in.”
Discouraging responses were often like this: “You can try to get permission from a social worker or a supervising nurse; if we have that permission on file, then someone will come to open the locked door at those times.” Or, “We try to avoid that, but usually we’ll usually let you in.”
Very discouraging responses were often like this: “Our doors are locked and the person with the keys is at a fixed station and doesn’t walk around that much. So you can ring the bell but it may take a long time before anyone comes to let you in.”
However, 5 responses were completely non-compliant with federal law, all variations of “no” such as ... “I’m sorry, but our doors are locked before _ a.m. and after _ p.m.” Or, “No, you must come between those times.”
Obviously, NHs in NY have not yet gotten the message that since 1987 immediate family have been allowed to visit with their loved ones whenever they want, and now other visitors may also visit at any time, albeit subject to some possible restrictions due to resident privacy and care issues. Posting limited visitation hours is not in accordance with federal law, unless those posted visiting hours say 24/7 or “come visit your loved ones anytime.”
For immediate family members and relatives of loved ones placed in NHs in New York, it is both outrageous and sad that so many NHs are actively violating the law and illegally restricting and/or discouraging visits from caring family members.
So, is your facility in compliance with federal law?
Published in Annals of Long-Term Care, May 9, 2017. Access online only. Access at: http://www.managedhealthcareconnect.com/blog/your-nh-visitation-policy-compliance-federal-law
Note: Direct links to all sources quoted in this article appear in my blog at the Annals access site.
Thursday, April 20, 2017
Friday, April 14, 2017
It’s now been one year since the death of my wife, Clare, after her ten year struggle with Alzheimer’s disease (AD). As an AD spouse for ten years, I experienced more days of sadness and grief than I can count. On some days, my sadness led to severe depression. I wanted to continue living so I could be with my children and grandchildren, as well as with special relatives and friends, but at the same time I questioned how I could ever again find happiness again similar to what I had experienced with Clare. On some days I literally did not get out of bed because I was so depressed. I felt married and widowed at the same time those last few years as Clare’s AD worsened to where she no longer knew my name, or that I was her husband.
There were several inspirational thoughts that keep me afloat during my darkest days as a caregiver, and some of these thoughts were extremely helpful as I dealt with the sadness, grief, and tremendous feelings of loss that I experienced for many months after Clare was gone. I present them here in the hope that one or more of these inspirational thoughts may also be helpful to you.
For many months I kept singing along to two Katy Perry songs ... “Roar” and “By the Grace of God.” On my worst days I sang them aloud, over and over and over again, shouting more than singing, both at home and in my car. In “Roar,” 1 Perry sings about having “the eye of the tiger, a fighter,” and that she is “a “champion.” I wanted to feel like a champion. I wanted to feel in control of my life again, and feel that I was going to come back from my despair and depression.
In “By the Grace of God,” 2 Perry sings about how, after a love break-up, she finds herself lying on her bathroom floor. She sings, “I picked myself back up, I knew I had to stay, I put one foot in front of the other, I looked in the mirror and decided to stay.” She also sang about how “the truth was like swallowing sand,” a fairly good description of how I felt on some days knowing that I was losing Clare more and more each day and soon would be widowed ... and how I felt after I had to face the reality that she was now gone forever. Sadly, the only certainty with AD is that death is inevitable ... there are no AD survivors.
There were many other phrases in "By the Grace of God" that I related to ... lines such as "Running on empty, so out of gas" and "Found I wasn't so tough." But that song also had the line, "I am not giving up." Louder and louder, over and over again, I would shout out that song ... and it helped me. A lot.
Something else that helped me a lot was re-reading the “Serenity Prayer” 3 that I keep posted in my home office ... “God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.” These words reminded me that I had to accept the reality that Clare was dying and there was absolutely nothing I could do to change that reality. All I could do was make sure that Clare was receiving the best care possible and was as happy as possible.
Those same words were just as valuable after I lost Clare ... I had to accept that she was gone from my life, but also accept the reality that I needed to move on with my new life as a widower. I also knew I had to accept the fact that I now had to make some important decisions in my life and not dwell on what might have been or could have been. I had to focus on what I needed to do in order to give myself the best opportunity to live a reasonably happy and healthy life as a widower.
I also came across some very wise words from Swiss psychiatrist Elisabeth Kubler-Ross, who wrote this about grief: “The reality is that you will grieve forever. You will not ‘get over’ the loss of a loved one; you will learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again but you will never be the same. Nor should you be the same nor would you want to.” 4
And that brings me to the last inspirational thought I want to share, words that led to my “Aha” moment. I no longer remember where I read these words or who wrote them, but the author said that when you lose a loved one, instead of looking back with sadness at your loss you should think instead about how fortunate you were to have had your loved one in your life for all of those years.
When I read those words, I literally looked at a picture of Clare and cried ... but I also smiled, recognizing how incredibly lucky I was to have been with Clare for all those years, and how instead of mourning her loss each day I should feel incredibly happy and lucky that I shared 51 years with her. I know that I will grieve forever, but each month I am making progress in learning how to live with that grief.
These inspirational thoughts continue to keep me going even now. I sincerely hope that one or more of these thoughts may also bring solace to others. A caregiver watching a loved one die of a degenerative disease such as Alzheimer’s ... a disease that is without any hope of “remission” or “survival” ... cannot avoid deep emotional pain and anticipatory grief. An Alzheimer’s widow or widower may find that pain and grief remaining for a long time after the death of a loved one.
But if one can find some comfort in the words of others, the path to moving on with one’s life during and after caring for a loved one with Alzheimer’s may be somewhat easier. I know it was that way for me.
Published in AFA Care Quarterly, Spring, 2017, pp. 8-9. NOTE: This issue has a wedding picture of Clare and me on its cover, along with another picture of us in happier times, and includes several more pictures of Clare and me alongside my article. This issue can be accessed online at: http://www.alzfdn.org/Publications/afa-care-quarterly/
Tuesday, March 14, 2017
Although my wife passed away last year after her ten year battle with Alzheimer’s disease (AD), as a former spouse caregiver I will always remain an advocate for improving the diagnosis and treatment of people with Alzheimer’s. Here is my wish list to improve the lives of caregivers as we begin a new year.
1. I wish that our government provided much more money for AD research to find ways to prevent, effectively treat, and cure this horrible disease. If we funded AD research at the level we fund research for cancer and heart disease, perhaps we could come up with effective treatments sooner and maybe even learn how to prevent Alzheimer’s disease.
2. I wish that there were more support groups designed solely for AD spouses. Most AD support groups are open to all caregivers, but spouse caregivers have unique mental, emotional, and financial needs. Spouse caregiver groups should be able to meet weekly when possible, but at least on a biweekly basis. For a spouse with a pressing need, waiting one month to discuss that need is much too long.
3. I wish that national and local AD organizations provided support groups designed exclusively for recent AD widows and widowers. Whereas there are some support groups available to all widows and widowers, those for AD widows and widows are few and far between. Organizations already providing support groups for AD spouse caregivers should continue providing support for those same caregivers after they lose their spouses to AD.
4. I wish that there were more social daycare programs specifically tailored for those with AD. Generic daycare programs for seniors are fine, but too often they are staffed by personnel who have had no training for how to deal with those seniors with forms of dementia. Ongoing staff training should also be provided at assisted living facilities, nursing homes, hospice, and any other facilities where people with AD receive care.
5. I wish that there were more social daycare programs with extended hours for those with AD. Caregivers who are still working or who simply need more respite time would have a lot less stress in their lives if there were more available programs that begin early in the morning and end later in the evening.
6. I wish that more high profile entertainers, athletes and professional sports teams “adopted” their local AD organization as one of their favorite charities. Promotion of local AD organizations through public announcements, charitable events, and annual gifts by high profile public personalities would raise the visibility of AD organizations and possibly encourage more gifting and support.
7. I wish that local AD organizations more extensively explored “partnerships” with neighboring town senior citizen programs to seek greater local, state, or federal funding grants to support more local AD programs.
8. I wish that local AD organizations distributed brochures describing their programs to the local offices of general practitioners, internists, neurologists, geriatric psychiatrists, memory disorder clinics, hospitals, and anyone else in the medical field working with patients who may be experiencing AD. Doctors should give these brochures to their AD patients and caregivers, and also have brochures available in their waiting rooms for anyone worried about AD or memory issues.
9. I wish that local AD organizations sold items with their logos on them (shirts, sweatshirts, baseball caps, umbrellas, shopping bags) so their “advertising” would alert others both to their existence and their availability to help caregivers.
10. I wish that all doctors who prescribe AD medication would become more knowledgeable with the research on the efficacy of those meds and avoid automatically renewing prescriptions for costly AD medication that cannot possibly be effective anymore, if they were even effective at all for the first year or two. Money spent on ineffective medication could be much better spent on other patient and caregiver needs.
If you would like Dr. Vann to respond to questions or comments about this article, please email him directly at email@example.com. You can learn more about his journey with Alzheimer’s at www.allansvann.blogspot.com where you can also read his articles that have been published in caregiver magazines, medical journals, and in major newspapers. All of his columns on The Huffington Post may be accessed at www.huffingtonpost.com/allan-s-vann.
Published in Today’s Caregiver, January/February, 2017,pp. 14-15.
Access online only at: http://www.caregiver.com/magazine/digital/caregiver_jan_feb17/8B998B3E5DB3BD1337AC6BF4C9011
Caregivers for loved ones with Alzheimer's disease (AD) often experience significant stress caused by their daily caregiving responsibilities. Some caregivers who feel the need for respite may be able to rely on family or friends to assume their caregiving responsibilities for a brief period of time at no monetary cost. Some caregivers may live near facilities or organizations where they can enroll their loved ones in social day care programs which would then allow caregivers a period of respite each week. Costs for such programs vary around the country. Similarly, some assisted living facilities and adult homes may admit a person with AD for a limited number of days to permit the caregiver to have some respite, but such facilities may charge a considerable fee for such a service.
However, there are some programs that provide periods of respite for AD caregivers at no cost. Readers who want to learn more about these programs should go to the websites of these organizations to learn more.
The National Administration on Aging (http://www.aoa.gov/AoARoot/AoA_Programs/HCLTC/Caregiver/index.aspx) provides information on respite opportunities that may be available to you through their National Family Caregiver Support Program (NFCSP). This program funds state partnerships with community service groups to provide support for family caregivers. Another federal government site, Alzheimer's Help (http://www.alzheimers.gov/help.html) also provides information for AD caregivers about respite opportunities, with suggested contact information for additional organizations.
The Senior Companion program (http://www.seniorcorps.org/rsvp/senior-companions/) is one of several programs provided by Senior Corps, a national volunteer program that coordinates volunteers aged 55 and over to provide assistance in their local communities. If your community has such a program, volunteers may be able to provide free respite for AD caregivers by providing several hours supervising loved ones or helping with household chores.
The U.S. Department of Veterans Affairs (http://www.caregiver.va.gov/support/support_services.asp) offers programs designed specifically to support caregivers of veterans, including up to 30 days of respite per year, either in the caregiver's home "or through temporary placement of a Veteran at a VA Community Living Center, a VA-contracted Community Residential Care Facility, or an Adult Day Health Care Center." The VA will also provide respite care "in response to a Family Caregiver's unexpected hospitalization, a need to go out of town, or a family emergency."
State Lifespan Programs (http://archrespite.org/lifespan-programs) are offered by various states that have applied for grants provided by the U.S. Department of Health and Human Services through its Administration for Community Living. More than 30 states have already received such grants to provide respite programs. To see if your state is a recipient of a Lifespan grant, readers should go directly to the Lifespan website. Different states offer different programs.
The Family Caregiver Alliance (http://www.caregiver.org) is a non-profit organization that maintains a resource center in the San Francisco Bay area of California that provides respite opportunities. The Alliance also maintains a map with a separate Family Care Navigator (https://www.caregiver.org/family-care-navigator) where caregivers can click on their own state and be referred to specific information about caregiver respite programs available in that state.
Hope Health (http://hopehealthco.org/HopeDementiaRespite) is the largest non-profit hospice and palliative care provider in New England. Caregivers in Rhode Island and Massachusetts are able to apply for three types of respite grants ... in-home care, adult day care, and in-facility overnight care ... once each year. The in-home grant provides a nurse at no cost for three three-hour periods to allow caregivers to attend Hope Health support groups.
Road Scholar (http://www.roadscholar.org) is the nation's largest not-for-profit educational travel organization, dedicated to inspiring adults to learn, discover, and travel by enlisting world-renowned faculty and local experts to immerse participants in experiential learning activities. In 2015, Road Scholar created The Caregiver Grant (https://www.roadscholar.org/about/financial-assistance/caregiver-grants) to provide respite time for family caregivers by providing grants of up to $1300 to help offset costs of an educational travel experience. Individuals 50 and older living in the United States and currently serving as caregivers ... or caregivers who have lost loved ones within the past two years ... are eligible to apply for a grant, regardless of whether the loved one is receiving or had received home care, adult day care, hospice care, memory care, nursing home care, visiting nurses, or comparable or related services.
Caregiver Grant recipients are responsible for their own transportation to and from their travel destination, but Road Scholar will cover all other costs ... accommodations, meals, taxes, gratuities, a travel protection plan, and any fees for lectures and activities up to that $1300 amount. Specific information about Road Scholar caregiver grants, including application forms, may be found on their website.
If you would like me to respond to questions or comments about this article, please email me directly at firstname.lastname@example.org. You can learn more about my journey with Alzheimer's at www.allansvann.blogspot.com where you can also read my other articles about Alzheimer's disease that have been published in caregiver magazines, medical journals, and in major newspapers. You can read my Alzheimer’s blog columns on The Huffington Post at www.huffingtonpost.com/allan-s-vann.
Published in Today’s Caregiver, February 7, 2017. Access online only at:
A bill known as the EUREKA Act 1 ... “Ensuring Useful Research Expenditures is Key for Alzheimer’s” ... was introduced with bipartisan support (62 co-sponsors) in the U.S. Senate by Mississippi Senator Roger Wicker in 2015, and in 2016 companion legislation 2 was introduced in the House of Representatives with 37 co-sponsors. This Act was intended to “establish EUREKA Prize Competitions to accelerate discovery and development of disease-modifying, preventive, or curative treatments for Alzheimer's disease and related dementia, to encourage efforts to enhance detection and diagnosis of such diseases, or to enhance the quality and efficiency of care of individuals with such diseases.” 1
Funding for the EUREKA Act 3 called for annual award amounts not to exceed $10,000,000 for each fiscal year from 2017 through 2021, with a provision that such funding would not supplant any other NIH funding for Alzheimer’s research.
On December 13, 2016, President Obama signed into law the “21st Century Cures Act,” 4 a $6.3 billion package of healthcare legislation that incorporated some aspects of the proposed EUREKA Act. According to the press release of Tennessee Representative Steve Cohen, one of the House sponsors of the proposed EUREKA Act, the EUREKA section of the 21st Century Cures Act 5 would instruct the Director of the National Institutes of Health (NIH) “to support prize competitions to accelerate the discovery and development of treatments to alleviate, prevent, and cure certain diseases, like Alzheimer’s.”
However, unlike the proposed EUREKA Act, the 21st Century Cures Act does not allocate a specific sum of money to be spent solely on Alzheimer’s research. Of the $6.3 billion allocated by the 21st Century Cures Act, $4.8 billion is authorized for the National Institutes of Health (NIH), $1 billion for states to use for opioid abuse and treatment programs, and $500,000 for FDA matters. Of the $4.8 billion NIH funding, “$1.4 billion is for President Obama’s Precision Medicine Initiative, $1.8 billion for Vice President Biden’s Cancer Moonshot, and $1.6 billion for the BRAIN initiative.” 4
Money set aside for the BRAIN (Brain Research through Advancing Innovative Neurotechnologies) initiative, was established by President Obama in 2013 “to help researchers uncover the mysteries of brain disorders, such as Alzheimer’s and Parkinson’s diseases, depression, and traumatic brain injury (TBI).” 6 Unlike the proposed EUREKA legislation, the BRAIN initiative is not focused solely on Alzheimer’s, so just how much of the $1.6 billion set aside for BRAIN that will actually be spent specifically on Alzheimer’s research remains to be seen.
The 21st Century Cures Act legislation does represent progress. However, until our federal government commits massive amounts of money to specifically target Alzheimer’s research, as it has done for several decades to learn more about cancer and heart disease, Alzheimer’s will remain a major killer of Americans, a massive stress inducer to millions of caregivers, and a major cost burden for our Medicare and Medicaid programs.
If you would like Dr. Vann to respond to questions or comments about this column, please email him directly at email@example.com. You can learn more about his journey with Alzheimer’s at www.allansvann.blogspot.com where you can also read his articles that have been published in caregiver magazines, medical journals, and in major newspapers. All of his columns on The Huffington Post may be accessed at www.huffingtonpost.com/allan-s-vann.
Today's Caregiver, March 14, 2017. Access online only at: