Chapter 3: Moving Your Aging Loved One into an Assisted-Living Facility or a Nursing Home
Excerpt. © Reprinted by permission. All rights reserved.
THE PROGRESSION OF LONG-TERM CARE
The progression of most elderly people through increasingly deeper levels of long-term care (LTC) is a gradual process. LTC can be provided in the home, where it is delivered by both formal caregivers (paid professionals) and informal caregivers (family and friends), or in a facility. LTC facilities vary according to the amount of care they offer. They range from assisted-living facilities, where each senior has a small apartment or a private or semiprivate room, receives meals in a common dining hall and is assisted by a trained support staff that regularly checks up on the residents, to around-the-clock nursing care facilities, which resemble hospitals and that provide constant medical care in addition to assistance in normal daily tasks. Also, there are continuing care retirement communities.
The (CCRCs). Medicare defines CCRCs as “retirement communities that offer more than one kind of housing and different levels of care. In the same community, there may be individual homes or apartments for residents who still live on their own, an assisted-living facility for people who need some help with daily care, and a nursing home for those who require more care.”
Hospice care is an option for the dying loved one. Hospice care is something that can be delivered in a hospital, a private home or a private facility when the end of life is imminent. If your loved one is terminally ill and wishes that no further extreme medical interventions be performed on his or her behalf, hospice is often preferred, because of the philosophy behind the treatment. Receiving food, water and pain management continue in a hospice situation only for as long as they are requested. By contrast, doctors and hospitals often intervene to keep their dying patients alive right to the bitter end.
When you see that your aging loved one needs assistance, in lieu of providing care yourself, you can:
- Hire an assistant to come to the home to provide your loved one with in-home care.
- Move your loved one into an assisted-living facility, which offers a relatively independent lifestyle, though trained personnel are on the premises to assist in daily tasks. In the first level of assisted living, residents are free to come and go as they please. In the second level of assisted living, such as would be needed by a patient in an advanced stage of dementia, for their own protection, residents are unable to leave the facility unaccompanied.
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Move your loved one into a nursing home, where, in addition to assistance with activities of daily living, skilled nursing care is offered 24-7. Nursing homes have a medical doctor on call and registered nurses on-site at all times.
4. Move your loved one into a hospice, where end-of-life care is provided by health care professionals and volunteers trained to give medical, psychological and spiritual support to dying patients.
An assisted-living facility may help your loved one by preparing and serving meals, doing laundry, supervising the taking of medications and providing transportation to doctors and dentists. The more services your loved one uses, the higher the price tag is likely to be. In many facilities, residents make a monthly payment based on the cost of each individual service. Assisted living is not “free,” as some people think it is. In fact, it is extremely costly.
You can keep itemized costs down by participating in many ways in your loved one’s care, just as you would were your loved one living with you. By divvying up different tasks between family members, the workload is lightened and care remains a family affair. Be aware that you cannot “toss” your loved one into a long-term care facility and expect the facility to do all the work of caring for your loved one for you. For emotional reasons, the entire family needs to visit the loved one in the facility on a regular basis and—if possible—to take him or her out from time to time. By no means is long-term care a substitute for participating in the life of your family.
Families should always establish a routine of regular visits to check on the comfort of your loved one.
How often has the facility changed ownership within the past five years?
If there has been more than one owner within a five-year period, ask why. And if the ownership changes again, find out if your existing apartment rental contract for your loved one will be grandfathered in with the new owners.
What is the likelihood that ownership of the facility will change again in the next two to three years?
The facility where my father lived for five years changed hands once a year the entire time he was a resident. If I had known this would happen, we might have chosen a different facility.
What are the potential ramifications if ownership of the facility changes hands?
If ownership of the facility were to change hands, this could have a direct impact on you and your loved one. Therefore, it is important to learn before signing on with a facility which aspects of your arrangement are protected from change. For instance, you should find out if the admissions protocols (for example, protocols that allow or forbid the acceptance of residents diagnosed with dementia or another illness) and rental agreements are protected from change. The new management could very well impose a rent increase if you have no such protection. In my dad’s case, I had to fight continually with new management to keep his charges down. At one point, his rent was increased every six months. Don’t think that the rent you originally agree to will stay the same for an entire year; it could increase monthly or every six months. In our case, one new management team wanted to evict residents with dementia. Before they could evict Dad, we changed his diagnosis on his paperwork from “dementia” to “motor-cognitive disability” and he was permitted to stay.
Will management allow you to tour the entire facility?
When looking for an assisted-living residence, don’t be fooled by what they want you to see and hear. Remember, this is a business! The sales manager will promise you a unique balance of home living, workshop activities, excitement, entertainment, socializing and, above all, relaxation and love for your loved one. During the sales presentation, never take the word of the sales manager or get excited by what you see on the first f loor or in the common areas of the facility. When you walk into the lobby of an assisted-living facility, notice if it looks like the grand ballroom at a fancy five-star hotel or an expensive Beverly Hills art gallery. Is the lobby filled with beautiful chandeliers that hang from vaulted ceilings? Are there amazing paintings on the walls? Is a baby grand piano playing softly in the background? Once you and the sales manager walk through such a lobby, the next step is to take you to a beautifully decorated resident “showroom,” where you’ll imagine how happy your loved one will be as a resident at the facility.
Don’t be fooled! Ask for a tour of the entire facility, and check each floor level, the kitchen, the public bathrooms and the workshop rooms. You may be shocked by what you see and smell. In multistory facilities it is often the case that the higher up the f loor, the more intense the smell of urine. Remember, all f loors and areas in an assisted-living facility are not created equal!
One of the best ways to identify good care providers is to get recommendations from other families who have direct experience with the facility.
What are the visiting hours?
Can you visit your loved one whenever you like or only during special visiting hours? If there are designated visiting hours, run, run, run! Limiting visitation to certain hours allows staff members to put on a good show when visitors are around. Everything may be great during visiting hours, but what happens to the residents in between? You want to be able to visit your loved one 24-7, and it is best to look for a facility where this is possible. This will allow you to ascertain what is going on all the time, and the staff will not have anything to hide.
How many times has this facility been charged by the state licensing division for misconduct?
Find out about any specific misconduct on the part of the facility or any violation cited and how it was remedied. Know the answer before you pose the question to the facility’s sales manager. Do your homework!
What is the typical rate increase?
Find out how often there will be a rate increase and what the usual percentage increase in the rate is. Remember, long-term care is a business. The facility will charge for everything possible and has an incentive to increase its rates. Some facilities bill from month to month. If a facility does so, this entitles management to increase your rent whenever it wants and nickel-and-dime you. Given the high cost of care in general, this could lead to financial hardship. It is imperative that you know how often the facility changes its rates.
Are there any extra or hidden charges?
Determine if there are any extra or hidden charges, such as charges for room cleaning and laundry.
What is the turnover rate among staff members at the facility?
Your loved one needs to feel that he or she is in a stable environment. Unhappy staff leads to unhappy residents. If there is a high rate of staff turnover, this is not a place where you want your parent to live. Run, run, run!
How many staff members work during the night?
The number of staff members working between 9:00 p.m. and 6:00 a.m. must be sufficient to meet the needs of all residents.
How many staff members work the evening shift?
The number of staff workers on duty between 5:00 p.m. and 9:00 p.m. must be sufficient to meet the needs of all residents during these busy hours.
What are the evacuation procedures?
All assisted-living facilities and nursing facilities must train employees in emergency and evacuation procedures when they begin working at the facility. To ensure that employees stay up-to-date on new procedures, many facilities periodically hold unannounced staff drills. Find out if intercoms are used in the hallways for emergency and evacuation purposes.
Who helps the residents get ready for bed, and how long does this process take?
This is a very important question to ask the intake sales manager. Typically, there is an employee shift change between 8:00 p.m. and 9:00 p.m. When staff members on the night shift first arrive, they are quite busy, as they get briefed about the day’s events and receive updated patient information. Sometimes, your loved one may not want to change into nightclothes while the day shift is still on duty. If this is the case, make sure that there is a procedure in place to ensure that your loved one gets assistance from the night shift if needed. Assistance in changing clothes could save your loved one from falling and causing great unnecessary harm. You don’t want the staff members on the two different shifts to get caught up in the blame game, pointing a finger at the other shift for neglecting your loved one. Get all protocols in writing!
Are there any licensed nurses or nurse-practitioners on staff? What type of training and credentials does the staff possess? How many hours of the day are they available?
Nurse-practitioners, who are RNs with additional clinical training, are allowed to administer, and in some states even prescribe, medications. Certified nursing assistants (CNAs), by contrast, can only hand a resident a pill and watch him or her swallow it. If there are no nurses or nurse-practitioners on staff and only assistants, you will need to develop a Plan B in the event your loved one ever needs medical care when the licensed nurse or nurse-practitioner is not available.
How are the sundowner’s patients’ behavioral issues addressed and handled?
Health care professionals are trained in dealing with patients who suffer from sundowner’s syndrome. Often, the patient’s agitation will come on suddenly and at any time and can entail shouting, the use of strong language and possibly even violent actions. There is customarily a trained professional on staff who will help calm the patient and help the patient move past the agitation and thus prevent anyone, including the patient, from getting hurt. Some dementia patients seem to have more behavioral symptoms in the evening. The reasons vary from person to person. For example, sundowner is afternoon fatigue that follows a 24-hour cycle of less cognitive stimulation later in the day. A sundowner person can spend the entire day trying to cope with the confusing perception of a new environment, which is frustrating to patients with dementia. The caregiver of a sundowner patient is physically exhausted as well, which is why it is very important to have trained professionals to help you.
Are the residents allowed to wander around during the night?
If so, what does the facility offer these patients in terms of activities during the night? If your loved one is sleeping, you want to ensure that others do not disturb him or her. If your loved one sometimes wanders at night, you want to ensure that he or she is peaceful and receives the attention he or she needs. Creating an environment that engages the person can often reduce wandering.
How often does a physician visit the residents?
In assisted-living facilities it is typical for a licensed physician to visit once a month or to be available on an on-call basis. In a nursing home, a licensed medical doctor must be on the premises 24-7.
Is transportation to medical facilities or to routine doctor and dentist visits available?
Find out whether the facility provides transportation to doctors’ and dentists’ offices and other medical and rehabilitation facilities. And find out the location of the nearest hospital, in case there is an unexpected emergency.
What is the charge for dispensing medication?
Inquire whether the charge for dispensing medication is by the pill or by the dose or is included in the overall monthly rent. Make sure you understand what you are paying for before you sign any papers. Aim to get an all-inclusive rate for rent plus the distribution of medication. Personally, I would never pay a per-pill charge. In assisted living your loved one is likely to be given medications by a certified nursing assistant (CNA), who merely oversees the process, and so a per-pill charge seems exorbitant for the service performed.
How many times has the facility been closed due to a quarantine?
Find out if there have been outbreaks at the facility of scabies, a contagious skin infection stemming from an infestation of the skin by the human itch mite; MRSA (Methicillin-resistant Staphylococcus aureus), infections caused by a staph bacterium that is resistant to antibiotics and thus difficult to treat; or any other communicable diseases.
Unfortunately, catastrophic diseases such as COVID-19 have affected our loved ones who are living in assisted-living facilities, nursing home facilities, or long-term care facilities. According to the Centers for Disease Control and Prevention (CDC), many cases of COVID-19 in the United States have occurred among older adults living in long-term care facilities. This uncontrolled disease affects everyone emotionally, especially the caregiver and family members who are not permitted to visit their loved ones.
For caregivers, the CDC suggests that if your loved one cannot ask questions or otherwise communicate with facility staff, please help by taking the recommended actions below.
Carefully follow your facility’s instructions for infection prevention.
Notify staff right away if you feel sick.
Ask the staff at the facility about the steps taken at your nursing home or long-term care facility to protect you and your loved ones, including if and how they are limiting visitors.
In addition, I highly advise you to ask the facility if a staff member can schedule a time to help your loved one call family members if they are not able to dial a phone. Staying in touch with your loved one during this time is important.
Pandemic Planning Guidelines for Long-Term Care Facilities
NYSDOH’s letter to owners, operators and nursing home administrators: www.coronavirus.health.ny.gov/system/ files/documents/2020/03/nursing_home_guidance.pdf
CDC’s resource “Nursing Homes & Long-Term Care Facilities”: www.cdc.gov/coronavirus/2019-ncov/hcp/ nursing-home-long-term-care.html
CDC’s “Steps Healthcare Facilities Can Take”: www.cdc. gov/coronavirus/2019-ncov/healthcare-facilities/steps-to-prepare.html
CDC’s “Long-Term Care and Other Residential Facilities Pandemic Inf luenza Planning Checklist”: www.cdc. gov/f lu/pandemic-resources/pdf/longtermcare.pdf
What is the meal plan?
Ask the intake sales manager to describe the facility’s daily and monthly meal plan. Typically in a private assisted-living facility environment, there will be a head chef on staff. If your loved one is not on a restricted diet, ask if the kitchen can prepare his or her favorite dish on special occasions. Chances are the chef will welcome the new idea, and he or she may even incorporate the dish into the menu so that other residents can try it.
Will the facility accommodate special dietary needs?
If your loved one is on a special diet, such as a low-sodium diet, you must ensure that the facility can accommodate it.
Does the facility offer personal care and regular transportation to shopping and beauty salons?
What are the fees for personal care?
Find out the charges for personal care, such as hair, nail and beauty treatments. Many facilities do offer this service at an additional cost.
What activities, exercise programs and daily routines does the facility offer?
Find out if the facility offers bingo, card games, jigsaw puzzles, board games, movies, dancing, aerobics, parties and excursions. You do not want your loved one to live in a place where everyone is sitting around in wheelchairs, staring at the walls. If you see this, run, run, run! Choose a facility where scheduled activities are available on a daily basis. Your loved one must stay active if he or she is physically able to.
Are any religious activities provided?
If the facility does not offer any religious activities, ask if there are churches, temples, mosques or synagogues in the area that could send visitors or offer religious services at the facility.
How often does laundry get done?
Find out if there are any additional charges for washing and folding your loved one’s clothing. If you decide to have the facility clean your loved one’s clothes, it is your responsibility to label the inside of each garment with a black marking pen. In many cases, even when you go through the trouble of labeling each item, chances are your loved one may not ever see that garment again, or if they do happen to see it, someone else will be wearing it! I recommend that you take the time and wash your loved one’s clothing yourself to ensure this doesn’t happen. Missing clothing is pretty typical in assisted-living residences and other long-term care facilities.
Who is held responsible for lost or stolen items?
The incidence of pilferage in care facilities tends to be high. Keep your loved one’s valuables at home with you. Label all personal items with your loved one’s name, document each item on a list and have the facility sign the list for the record. If the items are listed and registered with the facility, then management is ultimately responsible for any missing or stolen items. While it is best practice to keep your loved one’s expensive items at home, he or she may refuse to part with a wedding ring or other piece of jewelry. Make sure everyone at the facility knows how important it is to your loved one to wear that item. In addition, make everyone aware that management has been notified about the jewelry. By doing so, you’ll minimize the possibility of the item’s theft.
How would you compare the facility to other similar care facilities?
Before asking the facility’s sales manager this question, visit at least five potential facilities in your area to assess and compare their quality of care. Do your research. The National Family Caregivers Association has created an online resource called SNAP for Seniors (SNAPforSeniors.com) that is a current, comprehensive and objective guide to all licensed senior housing in the United States. It can help you determine which facilities in your area have the best quality of care. For comparable information about nursing homes’ quality of care, you can also search online using Medicare’s Nursing Home Compare tool (Medicare.gov/nursinghomecompare).
During your search, ask for advice and leads from people you know who have loved ones residing in a long-term care facility. Contact your state licensing department and ask quetions about facilities’ citations and awards, or about anything that can help you make the best decision possible.
What is their policy regarding life-sustaining measures?
Ask if your loved one can have a statement regarding their wishes and choices readily available by having their will and advance medical directive for health care placed in their chart. Although this is an uncomfortable topic to even think about at the time of your loved one’s admission, facilities are required to ask about it. This is the step toward assuring that your loved one’s wishes about end-of-life care and resuscitation are respected.
Special note: this applies to assisted living, long-term and terminal care facilities.
Where can you voice your concerns?
Ask if the facility has a resident council committee that can take problems and complaints to the administrator. Typically, all facilities should be able to address your concerns and questions. But the real truth of the matter is that high-quality care is hard to find, especially if your loved one has a special need, such as dementia. Also, if you depend on Medicaid funding, you may not be able to find an ideal place.
You can use all these questions as a guide to help you decide which things are most important to you and which ones you are willing to compromise on.
THE FOLLOW-UP: IMPORTANT QUESTIONS TO ASK ONCE YOUR LOVED ONE HAS MOVED INTO A CARE FACILITY
Does your loved one feel safe in the facility?
It is very important to listen, listen and listen to your loved one…
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