Caring for an Aging Parent: Caregiving can begin as a result of a series of unsettling mishaps and warning signs that indicate a need for long term senior care. Perhaps your elderly spouse has wandered off and gotten lost several times; or a long-time friend has lost a lot of weight and rarely leaves home.
Caregiving can also begin as a result of unsettling mishaps and warning signs that indicate a need for long term elder care. Perhaps your elderly spouse has wandered off and gotten lost several times; or a long-time friend has lost a lot of weight and rarely leaves home.
Caring for an aging parent, elderly spouse, domestic partner or close friend presents difficult challenges — especially when a crisis hits and you are suddenly faced with the responsibilities of elder care. Perhaps your aging mother fell, is hospitalized with a broken hip and needs to go to a rehab facility or nursing home to recover.
You may be the only person to step in and become the caregiver, or you may be the beginning of a network of family members and friends willing to help care for your elderly senior.
Some advice to caregivers:
– Make sure you know the senior’s date of birth and Social Security number. You will need this information to access many services.
– Collect information about medical providers. If you haven’t done so already, gather details about your loved one’s physicians and health insurance. Here is some of the information you will need:
- Names, phone numbers and addresses of the senior’s doctors, dentist and pharmacy (be sure to include complete details about any arrangements the senior has made for discount prescriptions)
- Copies of health insurance policies and the front and back of all insurance cards; if your loved one is 65 or older, you will need a copy of his or her Medicare card. Medicare has prepared a helpful online booklet. To download it, go to the following website: http://www.medicare.gov/Publications/Search/Results.asp?PubID=10050&Type=PubID&Language=English
- Make a list of all medications (prescription drugs, over-the-counter drugs such as aspirin, antacids, herbal remedies, nutritional supplements — even daily multi-vitamins), dosage amounts and instructions for taking them (time of day, with food or between meals, etc.). Take this list with you to ALL of your loved one’s medical appointments to help avoid dangerous prescription drugs interactions.
- Date and results of recent medical tests, including exams, x-rays, CT scans and MRIs.
- Complete health history (also take this with you to all of your loved one’s medical appointments); if possible, include major illness and medical conditions for your loved one’s parents, brothers and sisters.
- Call a family meeting. Try to get as many people as possible involved from the beginning. Early input from them will facilitate communication and decision-making down the line. Allow all family members a chance to express themselves and their feelings about what should be done. If possible, designate a person to be responsible for each task.
- Find out if the senior has the proper legal tools and documents in place.
- Has someone been appointed to take care of business and make health care decisions in case of temporary or permanent disability?
- Has the senior made clear their wishes for end-of-life care? If necessary, consult an attorney specializing in elder law.
- These are some of the documents you should help the senior prepare if they haven’t already done so:
- Durable power of attorney for finances
- Durable power of attorney for health care
- Living will
Living Wills and Powers of Attorney for Health Care are often referred to as Advance Directives for Health Care.
Investigate your loved one’s health insurance matters.
– What kind of coverage do they have?
– Are they eligible for Medicare benefits or Medicaid?
– If so, are they enrolled properly?
– Do they have a long-term care insurance policy in place?
– If so, what exactly does it cover?
– Do they have any coverage through a private pension plan or retirement package?
Explore other available financial resources.
– What assets does he or she have?
– Do they own real estate?
– How much is their home worth?
– How much is in savings accounts, IRAs, stocks and bonds and other investments?
– What is his or her monthly income from Social Security, other government programs, private pension plans, CDs, other bank accounts, annuities and investments?
Recognize that loss of sight, hearing loss, memory loss, confusion, incontinence and depression are not normal aspects of aging. In many, if not most cases, these are treatable conditions. (They could very well be the result of prescription drugs interactions or drug side effects.) Failure to identify these conditions as being treatable could place elderly patients at risk of unnecessary functional decline.
Assisted Living Checklist — Choosing the right facility: Most elderly seniors do not need continuous skilled nursing care. But, many do need help with various activities of daily living, including bathing and dressing — sometimes even reminders to eat. These people, including many seniors with early-stage Alzheimer’s disease, can benefit substantially from assisted living facilities, many of which are part of continuing care retirement communities.
Assisted living facilities vary greatly in their services and philosophy of care. Thus, it is important to find the right facility for your loved one. It will have a profound impact on their dignity, quality of life and sense of well-being.
Assisted living facilities vary widely in size, from a few residents to hundreds. They typically offer private rooms or small apartments, common areas for socializing and recreation, planned activities, 24-hour staffing and controlled access.
Most assisted living facilities offer personalized care and support services, including meals served in a common dining area or taken to a resident’s room, shuttles for errands and appointments, housekeeping, help with medication management and emergency call monitoring. Assisted living facilities also offer some resident supervision.
Step One: Determine what you can afford
Many seniors who need help with their activities of daily living will never have to go to nursing homes — if they can afford assisted living. Unfortunately, Medicare pays nothing for assisted living, and Medicaid pays very little. Instead, virtually all expenses are paid out-of-pocket by residents and/or their families.
The good news is assisted living is not as expensive as it first seems. Instead, to an extent that varies from one person to another, it simply involves a shift of expenses from one living arrangement to another.
After a person’s capabilities decline to the point where they need assistance, their move into a facility is usually permanent. When their former home is sold, most of the expenses associated with it can then be used to help pay facility-based expenses. And, the money from the sale of their home can be used, for example, to purchase a CD or annuity that pays monthly interest to boost income.
Also, since a facility’s fees usually include all meals, no groceries are needed, thereby freeing up even more money. However, several factors need to be kept in mind.
Your loved one’s income needs will increase from month-to-month due to inflation. The cost of long-term care has been increasing 4.5% per year, faster than inflation in general.
– You need to decide how many years the income should last (the longer the period, the lower the income). Some people might use remaining life expectancy in a retirement calculator to estimate monthly payouts, but that would be a mistake. By definition life expectancy is an average for all people; therefore, half of us will live longer than our life expectancy.
– Instead, you want to be as certain as possible, without overdoing it, that your loved one won’t outlive their income.
– Work with a trusted financial advisor to assist you in converting each financial asset into a stream of monthly payments.
Step Two: Select a general location. Once you’ve determined how much your loved one can afford to pay for assisted living, select the city or region where their facility should be. Include your loved one in the selection process. After all, it is their future home you are selecting. The goal of assisted living is to allow the person to retain as much independence as circumstances permit. And, it is your role as a caregiver to help them maintain as much control over their lives as feasible, not take it away; this includes allowing them to make their own decisions whenever possible. And, be prepared to accept the fact that your loved one may have strong preferences about where they want to live even though their choice may not be the one you would prefer.
Step Three: Determine your loved one’s needs. The types of care available vary widely from one assisted living facility to another. To be certain that a facility can provide the care necessary for your loved one, first determine what your loved one’s needs truly are (they may be different than you think). When you compare assisted living facilities, some factors matter more than others. No perfect facility exists. Finding one that meets your needs is Goal Number 1. But don’t underestimate Goal Number 2, that is, getting the facility to accept your loved one. When you tour a facility and interview its staff, be thorough, clear and professional. Show them that you are part of the solution and will work closely with them to achieve the best care possible for the new member of their community.
Be ready to:
- Explain the type of care your loved one needs.
- Ask the facility to describe how it will meet those needs, for example, assistance with dressing, taking medications, incontinence, or general supervision.
- An assisted living facility should provide enough care and support to meet your loved one’s needs while encouraging and allowing them to remain as independent as possible.
- And, don’t forget that your loved one may need more care as time passes; ask questions that don’t apply now, but may in the future.
- Visit several facilities; services and fees will vary greatly.
Step Four: Go.
Make an appointment for a tour. Ask to see more than the public areas. Visit several residents’ rooms. Ask if both you and your loved one can join the residents for lunch or dinner. And, if possible, stroll through the facility on your own. This will allow you to experience it without an official interpretation. Talk to the residents; ask them what they like most — and what they feel could be improved.
Assisted Living Checklist
Choosing a Facility
Name of facility: _________________________________________________
Phone number: _________________________________________________
Date(s) of visit: _________________________________________________
Contact: ________________________________ Phone: ________________
General rating on a scale of 1 (poor) to 5 (excellent)
Circle one:12 3 4 5
Personal and Health Care. Not all states require assisted living facilities to write a plan of care for each resident. If your state does not require it, it would be wise to request a care plan for your loved one. This assures that the staff has evaluated the resident’s condition and developed written guidelines that promote communication and consistency.
Care plans begin with a comprehensive assessment of the resident, including level of function and social, emotional, mental and medical condition. The plan should focus on maximizing independence and functioning at the highest level possible. The assisted living facility should revise the plan every three months or whenever the resident’s condition changes.
Ask the facility to specifically describe how it will meet your loved one’s known care needs, e.g., incontinence, mental health, supervision or dementia. If you hope to avoid having to move your loved one again, take into consideration the fact that they may need more care in the future.
Personal Care Needs
– How will the facility determine if it is the appropriate facility for my loved one’s needs, or if another type of facility would be more appropriate?
– How will the facility evaluate my loved one’s needs?
– Who will do the assessment?
– What are his or her qualifications?
– How often are reassessments done?
– How does the facility help residents maintain their ability to care for themselves, especially toileting, dressing, and eating?
– How does the facility accommodate residents with changing needs – what if they need more physical assistance, become confused or incontinent?
– For patients who develop confusion, how does the facility help determine whether it is due to problems with medications or because of the onset of Alzheimer’s or dementia?
– How often does a staff member check on a resident’s whereabouts and well-being?
– If a resident’s behavior changes and becomes verbally or physically abusive, what steps will the facility take?
Health Care Needs
Assisted living facilities do not actually provide medical care. But, in your absence, the facility you select should manage your loved one’s medical care. This includes notifying you of material changes in your loved one’s condition, and assisting or supervising your senior with their medications.
This is especially important if the facility encourages aging in place. This philosophy allows residents to remain in the facility as they become more infirm, and to receive more care as needed, in many cases until they need 24-hour-a-day care or supervision. Consequently, it is important to evaluate the facility’s capacity to manage a broad range of health care needs even if your loved one is relatively healthy now.
The Plan of Care
– Does the facility prepare a written plan describing how it will care for my loved one?
– If yes, how often will it be revised?
– Every three months?
– After every change in condition?
– What professionals/staff are involved in the development and implementation of the plan?
– How will my loved one, my family and I be involved?
– What involvement does a confused resident have?
– What if I don’t agree with the plan of care?
– Does the plan focus on maintaining independence?
– Does it cover every aspect of a resident’s life — physical, psychological, social and medical?
– How often does the staff consult the plan?
Providing the Required Care
– How will the facility monitor my loved one’s health?
– Is there a nurse on staff?
– What are the nurse’s hours and responsibilities?
– Who is responsible when the nurse is not on duty?
– If a nurse is not on staff, are there regularly scheduled visits by a nurse or another health care professional?
– Does the nurse or other health care professional see each resident regularly? or only when the resident doesn’t feel well?
– If a resident doesn’t feel well, how quickly and to what extent will they receive medical attention?
– Will the staff set up medical appointments for my loved one?
– What health care services are available at the facility:
– physical therapy?
– wound care?
– hospice care?
– social services?
– Under what circumstances does the facility call the family? — the resident’s doctor?
Who decides when to call 911?
Are there written policies about how that decision is made?
What kind of emergencies are the staff expected to handle and how are they trained for them?
Medications The licenses of many assisted living facilities limit their nursing staff to only supervising residents when they take medications; no hands-on assistance is allowed. Residents keep their medications in their own rooms. This can lead to serious mistakes, e.g., forgetting to take their medications; forgetting that they had already taken them and taking another dose, etc. Mistakes with medications are often cited as one of the primary reasons seniors must be taken to hospital emergency rooms.
Other facilities allow their nursing staff to handle all aspects of a resident’s medication needs, including refills, selecting the appropriate medications to take, and physically helping seniors take their medications. These facilities generally keep all residents’ medications in a central location away from the rooms of residents.
– Are there any limitations on how the staff will handle your loved one’s medications?
– What safeguards are in place to ensure that your loved one gets the appropriate medications on time and in the correct dosage?
– How are prescriptions filled? Must a resident use the facility pharmacy? What are the costs?
– Who gives out medications?
– If not a nurse, how are staff trained and supervised?
– Who reviews medication procedures and how frequently?
Health Care Transportation
– How does the facility handle transportation to medical appointments? Are there any limitations?
– Is the transportation wheelchair accessible?
– What are the fees for using the facility’s transportation?
– What is the training/certification of the people who care for residents? What are the trainer’s qualifications?
– Are background checks performed on all staff members? Who does it, how and when?
– What is the staff-to-resident ratio? In general, facilities that offer care for Alzheimer’s or other forms of dementia should have a ratio of about 1-to-4. On the other hand, if most residents are lucid and need minimal assistance, the ratio could be much higher without endangering the safety of the residents.
– Is the staff trained to deal with aggressive residents? Wanderers?
– Is the staff visible?
– How long are staff shifts?
– How is staff members’ morale? Observe their demeanor and their interactions with each other and with the residents.
– Do staff members know residents’ names? Do staff and residents greet each other in passing?
– How does the staff respond to your questions? Trouble signs: Are they rushed, uncomfortable, angry?
– If either the resident or staff members are not native English speakers, can they communicate effectively with each other?
– What is the procedure for notifying families of any changes in routine or medical condition?
When looking at a facility’s activities, consider your loved one’s preferences. Some people enjoy group activities such as bingo, word games, card games, crafts, etc., even discussions of current events. Others prefer to enjoy their activities privately — they aren’t generally “joiners,” preferring instead to read a book, watch TV or go for walks. And others may prefer cultural or community events such as museums, theaters and concerts. With this in mind:
– Look at activity schedules. Are they varied? Are your loved one’s interests reflected? Are activities planned with residents’ involvement in mind? Are they designed to be fulfilling, that is, something residents look forward to — or are they designed primarily to keep residents busy?
– Who develops and supervises recreational activities? What is their background?
– Do residents have any input into the activities offered?
– Are residents involved in the community outside the facility? If so, how? What staff members are included?
– Are field trips available?
– Is it okay for a resident to go to an event by himself/herself or with a friend. If yes, what are the rules? Is transportation available by the facility or must the resident arrange it himself/herself?
– Are there recreational facilities such as game rooms on site?
– Does the facility offer opportunities to exercise? Are the exercise facilities pleasant to be in, and the equipment easily accessible and in good condition? Are there organized exercise programs, or are residents left to themselves to exercise if and when the whim strikes them?
– Can residents take walks outside? Are there protected/enclosed walking areas for residents with dementia?
– Are residents encouraged to be as independent as possible? Ask residents and staff, and make your own observations.
– Are residents allowed to have pets in their living quarters if they are able to care for them? If yes, what are the rules?
– How does the facility meet the religious/spiritual needs of residents? Does it provide transportation to nearby churches and synagogues? Or, are worship programs conducted in the facility itself?
– Is there a resident and family council? How often does it meet? Has the council taken any action recently?
Resident Services Are the following services available? If yes, note whether they are included in the basic fee or cost extra:
– Beauty parlor or barber
– Bed linens/light housekeeping
– Transportation for shopping/errands/non-medical appointments.
Meals: Before selecting an assisted living facility, join the residents for a meal or two. How does the food taste? Are residents offered a choice of foods at each meal? How often does the menu change? Or, do residents get bored with the same old food all the time?
TIP: Residents often resent the fact that they have reached the point where they can no longer take care of themselves and have to live in an assisted living facility. This can lead to a negative attitude which sometimes manifests itself as complaints about their meals, even though they are very good, nutritious and varied. So, despite what some residents may say, we suggest that you keep an open mind until you have eaten one or more meals at the facility.
– At what times are meals served? Is the meal schedule flexible?
– If your loved one has special dietary needs, how will they be accommodated?
– Does a nutritionist or dietitian review meals and special diets? If yes, how often?
– What happens if your loved one is late, misses a meal, or refuses a meal? Is the answer different if a resident is confused?
– Can your loved one ask to have a tray delivered to their room? Is there an additional charge?
– If a resident doesn’t like a meal, what are the alternatives?
– Is the dining area pleasant?
– Is the food attractive and nutritious?
– Is the food culturally familiar?
– If necessary, will the staff go to a resident’s room to remind them of meal times?
– Does the staff help residents get to the dining room if needed?
– Does the staff help residents eat if needed?
– Are snacks available at any time? What kind?
The Assisted Living Facility Bedroom/Living Space
– Is there an emergency call button near each bed? Or, do residents wear pendant or wrist call buttons? If so, do the pendant or wrist call buttons work outside of their room?
– If there is a separate living/sitting room, does it also have a call button?
– Is there a call button in the bathroom?
– How often are call buttons checked to see if they are working correctly?
– Is the bedroom/living space big enough?
– Is it well-lighted?
– Does it have a window?
– Is it clean and pleasant?
– How often is it cleaned?
– Can residents bring in their own furniture and personal belongings?
– What measures are in place to prevent personal property from being stolen?
– Is there a private bathroom?
– Are there grab bars in the shower? next to the toilet?
– Is the bathroom wheelchair-accessible?
– Are the living quarters private or shared?
– How many roommates would there be?
– How are roommate(s) selected? by matching their needs and personalities? or based only on which beds are available?
– What’s the policy if roommates have problems getting along with each other?
– What if one roommate has habits or mannerisms that upset another roommate, e.g., staying up late at night, yelling, going through personal possessions of others, keeping a TV’s sound too loud, etc.?
– What does the facility do if problems such as those in the previous question arise?
– What’s the policy on choosing or switching roommates?
– Can you and the senior meet the prospective roommate(s) in advance?
– Are separate rooms available for private visits?
Fees and other Costs
– What is the facility’s base monthly fee for your loved one?
– What services are provided for that fee?
– What additional services are available, and what are their costs? Extras such as laundry, room delivery of meals and incontinence supplies can be costly.
– Is an initial payment required? If yes, is any of it refundable?
– Can any of the fees/charges be changed? Under what circumstances? Who will be notified? How much advance warning will be given?
– If your loved one has to temporarily leave the facility in case of hospitalization, recovery in a skilled nursing facility, etc., how long will the assisted living facility hold his or her living quarters? What fees/charges would apply during your loved one’s absence?
– What happens if funds run out? Is there any financial assistance?
Answers to these questions will help you clarify a facility’s ability to care for people with health and behavior conditions that are more difficult to manage. It will also help you determine if you have recourse if you are asked to leave.
– What behaviors, conditions, or other circumstances are reasons for discharge?
– Is there an internal appeal process? What is it?
– How many days’ notice is given and to whom?
– How does the facility assist you if they proceed with discharge?
– What are the eviction procedures?
– Does the facility offer a separate insurance policy that covers theft or damage to a resident’s property, or is theft or damage to a resident’s property covered under the facility’s own insurance policy, or will a resident’s property be uninsured (the latter situation is usually the case)?