I’m Diane Menio, executive director of the Center for Advocacy for the Rights and Interests of the Elderly. I’m an expert on elder care. Ask me anything!

What are some red flags to look out for when researching and visiting nursing homes?

Put it to the smell test. While odors do happen in facilities, it shouldn't be overwhelming and should be cleaned up quickly. Look at everything, residents rooms, therapy facilities, activities. And, find out how they manage resident preferences. I'd also suggest that you talk with residents and families when you visit to ask them about their experience. And, don't just talk to the admission's director (marketing person), talk with the staff providing the care.

I’m a housekeeper at an assisted living facility. Based off of your comment here it looks like my job is a lot more important than people think! I work really hard to make sure it smells good. I don’t think people understand that it’s not exactly an easy feat to keep things smelling linen fresh when you have 25+ elderly patients living in one building!

It's a hard, important job that I'm certain is undervalued. Thanks for doing this good work, it makes such a positive difference to the environment people spend these (often tough) period of their lives. (From a grandson and RN)

Your job is very important! Thank you for doing the work you are visiting a loved one, don't forget to thank the staff if they are doing a good job. Unfortunately when bad things happen, we tend to forget about the all the good that is done.

We know there's a tremendous amount of sexytime going on in nursing homes.

What are the unique ethical problems surrounding sexual contact, consent, privacy, etc. in a nursing home and how are staff and families addressing this issue?

This is a very important issue. And, questions come up in a variety of ways. If a couple is going into a nursing, can they share a room? If they do, there should be a discussion about how and when they need privacy. Sometimes residents meet in the facility and choose to have a relationship. This too should be respected. However, there are often concerns if one or both of the participants has cognitive problems like Alzheimer's Disease. It is important to note that there is no one answer in this situation just as each person with these problems is different. Their cognitive problems may not prevent them from making an informed decision.

In practice it is often difficult for staff and families to deal with these situations. But we have to remember that if someone is in a facility, it is their home and they should be able to determine what kind of contact they want. It is also important to note here that rape does happen in nursing homes and this is underreported. Sometimes families do want to control the behavior and will ask the facility to separate the individuals or otherwise limit their free will. If the older adult has the ability to make this decision, it is their decision. You may expect that those who are LGBT often do not feel welcome in facilities regardless of their desire to have a relationship. We still have a long way to go in making sure that we are honoring the individual's wishes.

You may want to take a look at the 2006 film "Away from Her" with Julie Christie.

I always hear lawyers (half) joking about making sure that your parents do NOT live in PA, since PA has and enforces filial support laws, meaning kids can legally be held responsible for their parents' nursing home and other bills.

Here's an article about it:

https://www.paelderlaw.net/pennsylvanias-filial-support-law-children-can-be-held-responsible-for-parents-unpaid-nursing-home-bill/

What's your perspective on this?

We do have that law on the books. To my knowledge, it was not used for many years. My understanding is that facilities are trying to use this in cases where bills have not been paid. Even when a person is on Medicaid and in a nursing home, they must turn over most of their income to the facility - there are times when families refuse to do this. Other times, there may have been asset transfers that make it impossible for the person to qualify for Medicaid. Any time an older adult transfers assets, an attorney should be consulted. Medicaid (not just in PA) has a 5-year look back period. If you follow the rules, it is highly unlikely that this will happen.

I had worked in a nursing home as a kitchen supervisor for 5 years. Throughout my time there, there was not a single day where the nursing department was fully staffed. The sign " Hiring, RN's, CNAs," was always up with the nurses that were there very stressed and over their heads in the amount of residents we had. That wasn't just the case at my nursing home, but any others across the country. What can we do to solve this problem?

It takes a lot of advocacy. We've been working on this for more than 40 years. We were lucky to get the Nursing Home Reform Act passed in 1987, changes were made again as part of the Affordable Care Act of 2010 and in 2016 we were successful in getting an update to the Nursing Home Reform Act. It takes a lot of patience and in the meantime working to fix whatever can be fixed.

There is another problem with staffing. In my opinion, staff is the most critical to providing quality of care. Even the best staff will have problems when working without a break, covering two shifts, etc. #1 - staff is not paid enough - part of the reason you see those signs is because other settings can pay more; #2 - often staff does not get decent benefits including health care; #3 - we just don't value staff enough. And, we need to acknowledge that a part of the reason, but certainly not all, is driven by reimbursement levels. To be able to do better than this nursing homes need to balance their Medicaid payments with private pay rates. And, many nursing homes have a high census of Medicaid covered residents, some of whom privately paid until their money ran out. We need to find new ways to fix this. It definitely takes providers, funders, and advocates to make this happen. I hope you can help.

What are commonly overlooked resources available to most citizens when faced with the care of an elderly parent?

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What are financial opportunities commonly not made use of?

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What are some common financial pitfalls to look out for during elder care?

I'd like an answer to this as well. Having baby boomers as parents, this concerns me a great deal.

What are some common financial pitfalls to look out for during elder care?

I am sorry I didn't see your questions.

This is very complicated. As I mentioned to the last person, with the exception of nursing homes that are covered by private pay, insurances if you are lucky enough to have a policy, and Medicaid, other settings are determined by the state. Most states provide funding for those eligible for Medicaid to have services in their home or community. Some states cover assisted living as well but not Pennsylvania. Medicare only pays for short term rehab care.

It is important that when you decide on a facility that you look at the long-term costs. For instance in Pennsylvania, if someone is admitted to an assisted living facility and runs out of money, they may not be able to stay. If they require nursing home care, it may be more difficult to gain admission.

Mom had a stroke that left her paralyzed on the left side. Two person assist. I'm an only in another state. After rehab didnt work, she was transferred to LTC. From what I can tell, they put her at the end of a hallway and forgot about her. When I arrived a week later, she was filthy with her hair greasy and caked cream in her genitalia. Her diaper was clean and no sores, but she had not been properly cared for. She went from chatting with me in mid Oct to whispering gibberish in mid Nov. She died a week later. I was not notified about the move or her change in condition. This was in AL in 2016. What is my recourse, if any, and statute of limitations?

I am not sure about the statute of limitations. You can consult with an attorney but you should have good documentation. Did you make a formal complaint at the time? If not, you might want to let the licensing agency know although i'm not sure they will do much about it.

My condolences, no one should have this experience.

What is the best way to safe guard an elderly person’s finances from abuse?

First, look for the right facility. And, one of the best ways is to be there as often as you can. Get to know the staff. If there is abuse you'll see it. Unfortunately, many facilities do not have adequate staffing even though they may meet staffing requirements. I would suggest that you act quickly any time you see something that doesn't look right. And, listen to the resident. It is not uncommon for staff and even family to dismiss complaints because they think that the person is confused. Make sure you take all complaints seriously.

All facilities licensed in Pennsylvania are required to post signs with the phone numbers for the Long-Term Care Ombudsman Program and the Licensing agency. You may be able to solve a problem by talking with the staff and/or administration but don't hesitate to call if you are not satisfied. Everyone in the country has access to an ombudsman.

How do you recommend family deal with compassion fatigue? I'm currently my mother's carer until I move out, I have been for years, and it's taking a toll on my mental health. I only have 2 more months until I leave but caring for her is hard on me. She often says she wants me to live my life and that I don't need to take care of her but she relies so heavily on me to get everything done that it feels like I can't, hence me leaving so drastically. I want to enjoy my time with her and not feel like she is burdening me because of her illnesses.

Please get some help. There is a Family Caregiver Support program that might be able to provide some respite. You may also benefit from participating in a support group and there may be services that can be brought in to help her so that you can enjoy your time with her. I encourage you to call one of our advocates at 800-356-3606 to get help in finding resources and getting support.

Many cultures guide people into death and into the afterlife, such as the Tibetan Book of the Dead which guides people dying towards the other side rather than holding onto guilt/wrath/attachment to loved ones. What sort of ways does your facility prepare elderly for death in order to make it a smooth painless and beautiful process?

I do not work for a facility. So I'm not the best person to answer this question. But this may be a good question to ask if you are considering a facility admission.

I have a parent who lives a few states away who is in need of assisted living. What is the best way to make sure I'm finding the best option for them if I don't have the ability to spend weeks checking out nursing homes?

First of all, you want to make sure you are looking for the best setting for them. There are many options available. If staying at home is an option, services can be brought in. If they are in need of some personal care and minimal medical supervision, an assisted living facility may be the answer, and if they need more complex nursing care, a nursing home might be the best setting.

Whatever setting you choose, there are considerations that may be particular to your parent and your family. Is the setting close enough to family/friends so that they can have regular visits? There are many personal issues that may be unique to your parent like particular activities they enjoy; is it important that they take their own things with them; and others. You may also want to look at quality. You can get information on nursing homes at: https://www.medicare.gov/nursinghomecompare/search.html. Others settings are not regulated by the federal government.

When you have found a number of settings that meet your criteria, Check to make sure that the facility is well maintained, that residents are occupied and engaged, and look at what is available including taking a look at the menu. You can ask to have a meal there and whatever the setting, you can ask to see their last inspection. In nursing homes, they are required to post this.

sounds good but possibly expensive... what resources are available to help absorb these costs? or is it all just patient paid?

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Roughly how much do you think assisted care, nursing homes, etc cost?

I am sorry I didn't see these responses.

I did mean to say that if you have unlimited resources, you have a lot of choices. In Pennsylvania, there is no public funding for assisted living. You should check the state where your parent lives to see if they do, many states have coverage but it is likely that the person would have to meet income/asset requirements.

Assisted living varies greatly depending on the facility and in PA we also have smaller Personal Care Homes. Its complicated but thinking about these two settings, it could be anywhere from $1,600/month to $8,000/month. Nursing homes $8,000 - $12,000/month.

if on Medicaid, a nursing home gets paid less and is not allowed to bill you for extra services like laundry.

Hello!

I've read a few horror stories about elder abuse (https://www.newyorker.com/magazine/2017/10/09/how-the-elderly-lose-their-rights comes to mind). What can we do to prevent these situations (besides not moving to Nevada), especially if we don't have kids?

This article deals with a very important issue, guardianship. This often happens when planning documents are not in place. It may be triggered by abuse or exploitation or the person may not be able to take care of themseves and do not have the ability to consent. Families can petition for guardianship. There are many problems with this system that we along with others are trying to change. This situation in Nevada was particularly disturbing and criminal. I hope this is an anomaly. It is important that we work to improve the system to make this awful situation impossible.

My parents are both in great health, mobile and independent. I imagine that will start to change in the next few years. What can I do now to get ahead of things? I live on the west coast, my (single) parents live in the midwest. TIA

Make sure they have their planning documents in place. The Power of Attorney with specific powers and naming a trusted person is very important. Advance Directives in the event there is an emergency, a will. It is a good idea to seek counsel from an elder law attorney to help with any planning documents.

Most importantly talk about it and include not just them but yourself since we should all think about what happens if we have a medical or cognitive problem. The worst time to have this discussion is during a crisis.

How much of a problem is nurse burnout in elder care settings? What can be done by employers and communities to energize nurses to provide excellent continually excellent care in these settings and protect from caregiving fatigue?

It's a problem. That's why the other writer mentioned the job notices. There are so many reasons for this and there are ways to help. But it takes work and an investment. A number of years ago we participated in a project called Better Jobs Better Care that looked at recruitment and retention of workers. There were a number of projects that looked at solutions to the problem. If you take a look at this website, you'll see some of the work that was done. Some providers work very hard to make sure they are providing what staff need to be successful but this is very individual, I don't know of any large movement to improve jobs. There is still a long way to go.

Hi, Person with a Disability here.

For the Disabled Community nursing homes are the nightmare many of us fear. Not only because of loss of freedom, but neglect as well. We have been pushing states to adopt Medicaid funded consumer direct home care as a solution to stay in our communities. Do you see a growing demand for these types of programs among the elderly population?

Yes there is and Pennsylvania as well as many other states are instituting Managed Care for Long-term Care under Medicaid with a goal of limiting the use of nursing homes. In PA, this program is for persons age 21+ (with some exceptions) who are on Medicare/Medicaid or just Medicaid and in need of Long term care.

Pennsylvania also has an attendant care program for persons under 60 that has been operational since about 1990 that helps many people with disabilities with personal care, many so that they can participate in the workforce. Older adults can get similar services from a program called Options, provided through Pennslyvania's lottery funds.

I am glad to answer any questions you have. Since we don't have any current questions, I'd like to tell you more about our organization. Established in 1977, CARIE's mission is: to improve the well being, rights and autonomy of older persons through advocacy, education, and action. Our programs extend to the entire state of Pennsylvania and beyond. CARIE is a leader in providing direct assistance to the elderly, their families, and professionals in the aging field. Through telephone contacts and site visits to long term care facilities, the agency assists older people and their caregivers to assess needs, identify service resources, and make the necessary connections to resolve elder care issues. In addition, we use the information we learn from to help improve the service system. Our community education program works to raise public awareness through informational brochures, a speakers’ bureau, a periodic newsletter, and public service announcements. We work with policy makers at the state and national level on changing practices, laws, and funding for important programs to make sure that elders are able to live their lives with dignity.

CARIE can help with any eldercare issue (and we don't have an age cutoff). Please visit our website. And you can call 1-800-356-3606 M-F 9:00 am - 5:00 pm and one of our advocates will be glad to help you.

There are several questions before this comment, would love to see answers!

I hope I answered all of them. If I missed anything or you have any other questions, I'll check back.

Are there models from other countries that we could learn from or strive to follow?

Health and long-term care systems are determined by the culture of the country and of course the commitment. We are different from many western countries for several reasons, we don't have universal health care, our regulatory and payment systems are complex and not very flexible. It can take a long time to have an innovative program funded. For instance, a program called PACE (Programs for All Inclusive Care for the Elderly) that helps people stay at home and has good results was started in San Francisco in 1971, over the years that program got a combination of private and public funding to evaluate the program, then it was expanded to other areas in demonstration. It wasn't until 1997 that the program received authorization and was able to bill Medicare and Medicaid. Regulations took until 2006 to be published. As of 2017 there were 122 PACE programs operational in 32 states serving an estimated 38,000 participants and the program is growing (the program is called LIFE in PA to distinguish it from our prescription assistance program of the same name). Several weeks ago I participated in a conference and had the pleasure of meeting Eloy van Hal, founder of De Hogeweyk at Be, the Hogeweyk Care Concept in the Netherlands, a wonderful care setting. Take a look at the website to see more about it, I can't do it justice in a few words. It is important to note that Eloy is consulting with several providers in the US to try to replicate the model. I'm sure there is much more. It is always a good idea to see what others in our country and in other countries are doing that works.

What is the definition of elderly? Is there a threshold age? What other factors are taken into consideration before the term is applied?

There are many different answers to this question. For Social Security, it depends upon your age but it is 65 and above; for Medicare the age is 65, for Older Americans Act Programs, the age is 60; and I think AARP considers age 50 and above. But, chronological age is not always the best way to answer this question. There are many factors that can have an impact on a person's aging. You may know a 100 year old who is going strong and another person may be 58 and struggling with multiple medical and other issues.

My grandmother was killed due to malpractice in a nursing home in Florida. It seems the laws heavily favor the business over the individual, how can this eventually be fixed? Also, current laws prevent cameras inside nursing homes to give a 24/7 live feed/recording of your loved ones room for security/insurance/preservation reasons. This is a huge issue. Its unbelievable what this industry gets away with due to unfair laws.

I am very sorry for your loss. I am not familiar with Florida laws but in many states families can install cameras. If a camera is installed, it should not be in a public place where the rights of other residents might be compromised. I provided training in a facility last year where a camera that the family hid in their mother's room helped to prove abuse. The mother had been complaining for months but the staff dismissed the complaints saying that she was confused. The staff were prosecuted and spent time in prison. I'm not always a proponent of useing hidden cameras but in this situation, it proved helpful. I would check the laws, while there are restrictions in many states, there may be ways to use a camera if necessary.

The article appears to be exclusively about the Golden Living chain of nursing homes. Where can I find a list of the one third of nursing homes that were dangerously understaffed in 2015?

My dad lives in Pennsylvania, has stage 4 Parkinson's disease, and requires round the clock skilled care. He is still living in his home and my sister is very close by and keeps up with quality of care. We also have a very good Elder Care Manager. My dad does not want to leave his home. His savings will probably allow this for another year or so. So we are looking for options in the southeastern Pennsylvania region. Do you have any recommendations for nursing homes that will allow him to transition to Medicaid? Also, do you have any tips on how we may be able to maintain ownership of his home after he moves to a nursing home, if this becomes necessary?

Thanks for doing this!

Check the Nursing Home Compare site to find more information about staff in particular facilities. Nursing homes license in Pennsylvania for Medicare and Medicaid are required by law to keep the resident in the home when Medicaid kicks in. I would recommend that if Medicaid is in the future, don't go to a facility that doesn't take Medicaid. You can keep the home if there is a plan for him to return to his home or if there is a dependent person living there. But you should know that even if you are able to keep it, when you do sell it, it will be subject to estate recovery for whatever amount Medicaid has provided. You can call our office for help, we are located in SE PA

I've been in social work for a few years now, and will be starting a job in Adult Protective Services in a couple of weeks. What are going to be some of the barriers or resistance I might encounter from families of the clients I am working with to protect?

First of all when you are investigating a complaint, you will want to talk with the aleged victim alone. Families who are accused of abuse will often try to keep you out - you can find out from your employer what you can do in these situations. APS workers have intensive training. I am sure that you will learn a great deal. You'll be able to answer this question next year. Good luck!

How has your work affected your own plans for your own future?

I do have my documents and my family knows what I want. I have been a caregiver to my mother who had dementia and spent her last two years in a nursing home. I learned more from this experience than the 30 years I've been working in the field and from my education.

Hello Diane.

I've been an LPN since 2013 and am in school for my RN with plans to become an NP, likely specializing in geriatric care. Countless elderly experience abuse and neglect directly and indirectly due to a lack of adequate mandatory staffing levels in nursing/rehab facilities. How can I push for legislature to support safer staffing levels?

This is something that we have been working on for a long time. In some states there has been movement on this issue. In PA, we have a requirement but it is still not adequate, about 2.6/hours pp. Research has shown it should be more like 4.5 hours. (These numbers may not be 100% accurate). Feel free to reach out to me - you can find my contact information on our website, linked above.

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Can you suggest resources for Canadians?

I am probably not the best person to do that but Canada does have universal health care and long-term care is included in that. So Canadians generally have rights to many more resouces than US citizens. I suggest you seek informtion from your local aging organization. Here we have Area Agencies on Aging, I'm not sure what the equivalent is in Canada. If you get stuck call my office and one of our staff will help.

Do you know how to contact other groups like yours in different states? I live in Southwest Michigan and I am the primary caregiver for my mother who has Alzheimer's. It's near to impossible to find any support. My mother deserves the best and I can't be the best unless I have support. Thank you for your time

Look for the Area Agency on Aging in where she lives. It would also be a good idea to contact the Alzheimer's Association, they have many programs that might help and can refer you to other resources. If you can't get any answers, call our number 800-356-3606. Good luck

A good ref book for caretaking a dementia spouse?

I suggest you contact your local Alzheimer's Association to find out what they recommend. There are a lot of books out there. Sometimes reading a book written by another caregiver can be valuable as can a support group.

We will be placing my mother in law in a nursing home but, of course, want to ensure the best care for her. I am absolutely petrified of her being sexually assaulted. What can I do ensure that she will be as safe as possible?

I understand. But, you should know that while even one incident of sexual assault is too many, there is not an epidemic. Make sure you visit often, get to know your mother in law's caregivers and listen to her if she has any complaints. And, you might want to vary the times of your visits. Stop by during the night shift (its late but might be worth it because that is when there is usually no one from outside the faclility present) to see how care is provided then and meet the night staff. I expect that if you've found the right place, by doing this you won't have to worry.

So many schools, workplaces and other youthful institutions have done great work with inclusivity and support for transgender folks, regardless of where they are in their transition. I know you can never be too old to transition, so do you see an improvement in this in elder care as well?

What can be done to help support trans support and education in elder care facilities and other support groups?

There are still many issues in long term care for LGBT elders. But there is work being done to educate providers and to become culturally competent. The leader in this country is SAGE in New York providing services and leadership nationally. Visit their website to find out more about what they are doing to change this.

Which way to Country kitchen Buffet?

Sorry can't help you!