Navigating the Maze of Long Term Care

This document is supplied by Gerontologist, David Hahklotubbe, as a free service in the hope that it will assist families in selecting the correct fit for their loved one, in pursuit of maintaining or improving the quality of that person’s life. Any and all feedback is welcomed:

Contact David at Choctaw House

Before you do anything.

  • Take a deep breath, remove yourself from your immediate situation and try to become as objective as possible. Now, having done that, acknowledge that no matter how hard you try, it is nearly impossible to become truly objective at this stage. It doesn’t always, but, hopefully, objectivity will come later. Denial is a powerful and effective barrier.
  • Take a few minutes to assess your situation. Are you as educated as you should be? If not, you are not alone. Most people don’t know the difference between a nursing home and assisted living or between hospice and hospitals. We have to accept that humans, but Americans in particular, do not want to acknowledge or embrace the aging process. Instead we run from it as fast as we can – this paradigm places us in a crisis when the inevitable (aging) occurs.
  • It is therefore wise to consult an unbiased source for quality information on your situation. Keep in mind that although a physician may seem to be the correct choice in asking about care options, they often are not. Also keep in mind that your diligence in seeking out the altruistic and unbiased source of information is imperative. To complicate an already overwhelming maze of confusion, there are individuals lurking behind the guise of ally. Beware of anyone who claims to offer their services for free!
  • You will need to have a comprehensive geriatric assessment done from an individual who is trained to perform one. A physical assessment can be done by a physician and a psycho-social assessment can be done by a psychologist. Or, you may choose to enlist a geriatric case manager. If all else fails, you may contact David Hahklotubbe for free advice. PLEASE STAY CLEAR OF “PLACEMENT SPECIALISTS” – these are rarely trained individuals and are unlicensed middlemen focused on placement sales. We’ll address these folks later.

Prior to embarking on finding a place, it is wise to have the following in check:

Physical Assessment

  • Ambulation
  • Any diagnosis/prognosis
  • Medications
  • Dietary needs
  • Allergies
  • Recent hospitalization

Cognitive/Psycho-Social Assessment

  • Memory impairment
  • Social requirements/Preference for interaction
  • Anxiety
  • Depression
  • Isolation
  • Inclination to wander/purposeful elopement

Financial Assessment

  • Long-term care coverage/insurance
  • Liquid/solid assets
  • Conservatorship
  • Durable power of attorney
  • Creating/Sticking to a reasonable budget

History

  • Tendencies
  • Family tree
  • Important people and events
  • Items which bring comfort
  • Important rituals

Health Care Desires

  • Durable Power of Attorney – health care
  • Advance Directives
  • End of life wishes

Your Well Being

Is making this large decision within your emotional capacity?

Are you educated? Or are you setting yourself, and your loved, one up for disappointment?

Are You Ready Yet? …..Not Quite

Before I send you out, you need to be able to speak the language. Part of the reason why the long-term care maze is so difficult to manage is because it is so jargon-laden. In this segment I will identify, define and give pros/cons of each long-term care option available.

The term “Continuum of Care” is somewhat of a misnomer, considering there is no logical or predictable path of progression as we age. Meaning, aging is a process unique to each individual – I will do my best to put each option in some sort of order – please don’t expect to necessarily follow this path.

In-Home Care: In-home care ranges from part-time non-medical “companions” who simply provide supervision and social companionship to around the clock nurses who assist with every aspect of the person’s well being.

Pros: The individual is allowed to stay in the familiarity, comfort and security of their sanctuary, their home. Giving up your home can be a major catalyst for emotional decline, perpetuating the cycle of loss.

Cons: Often this option is very cost prohibitive. 24 hour care has been known to cost upwards of $3,000 and can exceed $18,000 PER MONTH. In addition, this industry does not have a governing body or any licensing requirements – therefore, common complaints are: High turnover which effects continuity of care, Poorly screened or trained personnel, Theft and loss.

Independent Living: Aka, Retirement Living:

Independent Living is a broad term. From the structural standpoint, most Independent Living communities are set up like hotels. Each apartment’s main entrance is within the building for safety and security. The industry of Independent Living, like In-Home Care, is once again an unlicensed field. However, by law, Independent Living communities are prohibited from providing care. Although most Independent Living communities are set up with apartments boasting kitchenettes, for an extra cost, they will offer dining services – some offer all 3 meals, while others will offer only 2. Since this setting is like an apartment, and they are not able to offer care, you can obtain In-Home Care (above) as you would at home. Most Independent Living communities offer or coordinate several social activities and outings.

Pros: Although personnel cannot offer care, they can offer the safety, security and peace of mind that, in the case of an emergency, they will be there to facilitate medical attention. This setting is ideal for the elder who is highly social and incapable or simply tired of maintaining a home.

Cons: Although great for seniors who desire high levels of social interaction, for those who are intimidated or do not desire large groups of people, it may not be a fit. Because the staff are typically not trained to recognize signs of illness, memory impairment or those at risk of falling, declining elders are at risk. Most Independent Living communities do not allow wheelchairs, mechanized carts or even walkers in their dining rooms – subsequently isolating large populations of elders and limiting the stay of those who have created meaningful bonds and social circles. Since this field is NOT regulated, those who do not have family or advocates checking in on them, many elders fail in this setting as they decline unknown to anyone.

Assisted Living: Assisted Living is a very large segment of the long-term care field.

Assisted Living is a regulated entity guided by the Department of Social Services, Community Care Licensing Division www.ccld.ca.gov . The Assisted Living industry is mainly run by the smaller family-owned 6-bed “board and care”. Within the past 10 years, the hospitality field has recognized the opportunity and capitalized on the multi billion dollar Assisted Living industry. Operators are allowed to offer any range of services within the parameters set forth by DSS/CCLD. Some operators will only offer care for those with minimal needs, whereas others will offer a wider range of care, further some will offer specialized care such as dementia care or hospice care. Assisted Living allows elders to receive housing, 24 hour care, supervision, meals and activities. Assisted Living is NOT a medical model – meaning, the operator is prohibited from providing nursing care.

Larger Model Pros: Once again, like with the Independent Living setting, if the senior enjoys a larger social model, this is ideal. Larger models tend to offer a wider array of social and physical activities. Most larger Assisted Living facilities have a professional chef planning and cooking each meal. Some larger models also have an LVN, and, in some cases, an RN on staff to oversee the care personnel, recognize symptoms of illness and to correspond with physicians.

Large Model Cons: The larger corporate-owned, hospitality model, has created a tremendous competition among themselves. As a result, constant budget cutting tends to lend itself to unprecedented turnover in both, management as well as the hands-on staff, creating a lack of continuity, which directly affects the quality of life of the residents. Typically, the staffing ratios run anywhere from 8:1 to 15:1, which is not conducive to those needing real care. As a marketing lure, most larger Assisted Living communities quote a “base rate” which covers the bare minimum state-mandated level of care. Once a person needs care, for instance medication management, reminders to meals, incontinent care, extra laundry or even something simple like a newspaper delivered to their door, the fees can double and even triple from the “base rate” – a hallmark of the hospitality field which has infultrated this style of care. Lastly, many of these communities request “community fees” or “move-in fees” which can be non-refundable and upwards of 3x the first month’s rent. Buyer beware.

Smaller Model Pros: The smaller model boasts a more intimate “home-like” environment. In fact, most of the smaller communities are actual homes in residential neighborhoods. Smaller usually translates into more 1:1 care, in fact the lowest resident to care staff ratio, by definition, is 6:1. This setting is ideal for someone less social, like someone moving from home having lived alone, by choice. Additionally, meals are more often finely tuned to the residents’ liking – a major challenge for a large facility. These communities are usually more cost effective, despite delivering more intimate care. There are rarely, if ever, “community fees” within this genre.

Smaller Model Cons: Often these homes are run by altruistically caring individuals with a big heart. Unfortunately, a great deal of these operators do not have the education or credentials that one might desire. In addition, language barriers are common in this setting, making it difficult to communicate needs clearly, which only exacerbates pre-existing conditions such as hearing impairment or memory impairment.

Memory Care: Assisted Living (Dementia/Alzheimer’s Disease):

Bridging the gap between Assisted Living and our next category, Skilled Nursing lies Memory Care. If no “Nursing” or “Medical” care is needed, the elder may qualify to live in an Assisted Living community which specializes in care for those with Memory Impairments such as Dementia and Alzheimer’s Disease. The state has strict minimum requirements for operators to provide this type of care. Activities, Additional Staff Training, Condusive Physical Plant Layouts and Increased Staffing Ratios are a few examples of provisions which differentiate a non-memory impairment provider from a memory care community.

Larger Model Pros: Many larger models offer Assisted Living and Memory Care on the same campus or even in the same building but separated. The main benefit to moving into a larger model memory care unit is when a person has been in the assisted living program prior to the memory impairment. This way, they can still maintain meaningful relationships, continuity of care, recognize surroundings and decrease the trauma of the physical move. Once again, larger communities tend to offer a wider range and quantity of activities.

Larger Model Cons: Cohabitating large groups of elders with memory impairment, by nature, results in a decrease of quality of life. All dementias are accompanied by anxiety and agitation – in larger groups anxiety is a constant foe, as it only takes one elder to act out to disturb the entire community. In addition, there are 3 stages of any dementia. Most larger communities will mix all 3 stages together. There are large differences between each stage and the social, physical and emotional needs of each. While certain activities may appeal to those in one particular stage, the same activity may act as a catalyst for agitation or combative behaviors among others in a different stage. In response, a great number of elders with memory impairment sequester themselves in their living spaces due to intimidation or fear. Lastly, this option is usually out of most elder’s price range reaching as much as $8,000 a month.

Smaller Model Pros: A more intimate setting is ideal for those suffering from memory impairment. The smaller model, once again, tends to have a higher staff to elder ratio. In addition, the environment, by nature, is more manageable. Most elders with dementia are looking for home. As a result, the elder tends not to wander as much since the environment looks like (and usually is) a home, rather than a large, seemingly endless building. Activities can be tailored to the level of acuity of the group. More intimate relationships can be fostered with care personnel and with other residents, as well as the familiar faces of families who visit.

Smaller Model Cons: There is a tendency for the smaller homes to not offer as many activities. If the elder is coming from Independent Living or a Large Assisted Living community, there is often a rough transition period – “transition trauma”. Levels and quality of training are hit or miss. Again, the language barrier can be a significant problem. The elder with memory impairment is often unable to communicate effectively, a language barrier can only serve as a further lowering of a quality of life as well as a catalyst for anxiety and agitation.

Skilled Nursing: Aka, SNF, Nursing Home, Convalescent Home:

Skilled Nursing facilities offer nursing and rehabilitation care for those needing more than what can be provided in the home or in an Assisted Living setting. Licensed by the Department of Health Services, strict regulations guide these hospital-like environments. All care personnel are at least Certified Nursing Assistants (CNAs). The three main reasons why elders find themselves in this level are: Rehabilitation from a recent hospitalization, Debility and Decline, and, because most skilled nursing facilities accept Medi-cal, running out of funds. Over 50% of all nursing home patients have a level of memory impairment severe enough to be classified as dementia.

Pros: Many skilled nursing facilities accept Medi-Cal or Medi-Care. Most facilities offer expert rehabilitation services. Unlike a hospital, the personnel are trained with an emphasis on caring for the elderly, specifically.

Cons: Most skilled nursing facilities are not as esthetically pleasing as one would hope, however, some homes have adopted the “Eden Alternative” which incorporates pets, plant life, warm esthetics and expert training for staff to accommodate the elder in the end stage of their life in a home-like environment. If paying privately, skilled nursing facilities can be cost prohibitive starting at about $8,000 a month and can exceed $12,000.

Hospice Care: Aka, Palliative Care, Comfort Care:

Skilled professionals who assist in making the process of dying a pleasant experience. The general rule (there are exceptions region to region) is that once a physician gives the elder* a prognosis of six months or less to live, Hospice becomes an option. There are multiple approaches to Hospice; PPOs, HMOs and Non-Profit Hospice organizations. Hospice is typically a service, which comes to the elder**, however, a growing trend is for Hospice organizations to build facilities to accommodate the terminally ill. In most cases, particularly with the non-profits, the services of Hospice are free of charge.

* Hospice is not exclusively available to the elderly, anyone of any age who is terminally ill, can qualify.

** Hospice will come to the elder’s home. However, it is imperative that you verify (preferably before making a decision in long term care) the operator supports Hospice coming into their community – you will be shocked to find how few Assisted Living communities allow hospice in their buildings.

Pros: Where to begin? There are endless benefits to utilizing Hospice at the end of life. Not only does the elder receive warm caring service, the families receive a helping hand both emotionally and physically. A recent survey shows that in regards to the dying process, Pain is the most feared. With Hospice care, Pain Management is one of the main focal points. In addition, to be able to pass in the comfort, familiarity and privacy of your home or Assisted Living apartment, surrounded by family and caring professionals, makes the transition a pleasant one.

Cons: It’s difficult to come up with any warnings about this modality of care. The only possible exception is, if you have multiple options, research which provider has the best reputation. Often, an HMO or PPO will allow the elder to opt out and utilize a Non-Profit provider. Speaking from experience, the Non-Profit providers seem to offer better services and are more readily available to accommodate new clients. Distance is a factor – if you need a hospice nurse or medications delivered immediately, take proximity of their offices and personnel into consideration. The elder should suffer not one minute of pain.

W A R N I N G

Please keep in mind that another failure of our country-wide long term care system is that there isn’t a common lexicon or “universal language” of long term care. While, most terminology spans borders, the terms may have slightly, or in some cases, dramatically different meaning. The terms used above are 100% accurate in California, as for other states, I recommend you verify this with a knowledgeable and reliable local source.

OKAY, now it’s time to make that person-environment fit!

Where to start:

  • Choose the type of option you think your elder needs & call them.
  • Ask specific questions: if the provider won’t take the time to answer questions over the phone, can’t answer or dodges questions, put them on the bottom of the pile – don’t be lured into any community to take a tour before you determine whether it’s a possible fit – your time is valuable – don’t take a tour just to find that the community doesn’t meet your needs.

Remember, this field has become highly competitive which translates into high pressure sales and creative marketing gimmicks.

  • Don’t be afraid to ask how much the care costs. In order to get a truthful quote, be truthful about the needs of your loved one. Remember: OBJECTIVITY! With luck, the provider will be truthful about the costs! Caveat Emptor! (Buyer Beware)
  • Understand that most long-term care providers will quote the “base rate”, if they quote at all. Be sure to ask what that “base rate” includes. You will be shocked, more than once, to find out how “basic” the services are in the “base rate”.

Where are the highest rated facilities? Call the people who know:

  • Long Term Care Ombudsman (volunteer service – watchdog for the state) – To locate an office in your region: www.ltcombudsman.org/static_pages/ombudsmen.cfm
  • Local hospital discharge planners
  • Skilled Nursing rehab units and discharge planners
  • Word of mouth experience – Although most won’t openly discuss the experience of placing a loved one, it’s more than likely that you know someone who has – try the office, church, school etc. You’ll be amazed at the common threads.

Start Your Engines!!

You should now be fairly well equipped to start your physical search. There is a statistic that is lurking out there that I would love to see change. “Most people while searching for care for an elder call 6 providers and only visit 1.5” Please, I can’t express it enough, do your research. Visit the ones with the great reputations first, but to confirm your decision, pop in on the ones with the not so stellar ones as well. If nothing less, this will allow you to sleep at night, knowing that you made the right decision.

Before we get started with your tours, let’s discuss the power of being in the heat of the moment.

Never underestimate the magnitude of being in the moment. There is NO way that you will remember to look for all of the following, nor will you be able to remember what questions to ask the provider – they know this and plan for it.

SO, I’ve done you a favor – the lists below have been placed into a downloadable format for you to bring as a cheat sheet on your tours. Simply click on the blue butterfly to download. For most providers, the educated consumers are intimidating. For some, because most marketing personnel come from sales from outside the industry, you may have more knowledge than they do, I’ve seen it, it’s quite embarrassing and reveals a lot.

What to look for while on tour:

  • Do the clients look well kept?
  • Is there an odor?
  • Does the food look palatable?
  • What is the attitude of the staff?
  • What is the energy?
  • Do the clients resemble your elder?
  • How is the general cleanliness?
  • Speak to a resident and ask them their opinion
  • If able, speak to a caregiver and ask them their opinion.

Key questions to ask your potential provider:

  • Are there any openings? – male/female?
  • What range of services do you offer?
  • Do you offer services for memory impairment?
  • Do you offer hospice?
  • What is your facility’s philosophical approach to elder care?
  • What is included in monthly fees?
  • What services are extra? Each nickel and dime count!
  • What are the qualifications of the administrator?
  • What are the qualifications of the staff?
  • Who conducts your geriatric assessments?
  • How involved is the assessment (how long is it)?
  • What is your staff:client ratio?
  • Is the facility fully staffed?
  • How many of the staff are less than 6 months employed? (Turnover )
  • Is there a “move-in fee” “Community fee”? How much?
  • What is the community fee/deposit/move-in fee for? Is it refundable?
  • What does your facility do to prevent care giver burnout?
  • How often do you and your staff take vacations?
  • California state requires the most recent audit to be posted – ask to see it and read it

Be Prepared: What you will need prior to moving into any care home:

  • A physician’s report – care home will provide this
  • T.B. screen – on the physician’s report
  • Updated medication list – get from physician(s)
  • Time to read and understand the admission agreement – don’t sign anything without looking it over closely!
  • Time to assist with the comprehensive geriatric assessment

What if things go wrong; Contacts for assistance:

  • Local Long Term Care Ombudsman
  • Department of Social Services/Community Care Licensing Division
  • Local Adult Protective Services

This material is intended for the private use of those seeking assistance in bettering the quality of life of elders. Any other use of this material, without written consent, is strictly prohibited.