Ten Things to Know When Caring for an Aging Parent
There are so many more than ten things you will want to know, will learn, and will wish you knew after the fact, but I thought I would start with ten things I cover (one way or another) in Holding the Net: Caring for My Mother on the Tightrope of Aging.
- GERIATRIC CARE MANAGERS (also called Aging Life Care Experts) are professionals who can help determine what services your parent would benefit from, and then get those services set up. Services range from healthcare, to home safety, to help with moving, and everything in between. BEWARE of some who only want to sell home healthcare services; always interview candidates by phone first and make sure they can provide the kind of help you need. Find Geriatric Care Managers near you at the association website.
- COMPARE WEBSITES, provided by Centers for Medicare and Medicaid Services (CMS) are websites where you can compare the quality of healthcare providers your area. I had to choose a rehabilitation facility for my mother where my sister lived (i.e., not where I lived and knew people). I used Nursing Home Compare. I was able to compare the rehab nursing homes within 10 miles of my sister’s house on things like: ratio of caregivers to patients, pain management, and cleanliness. There are Medicare COMPARE websites for hospitals, physicians, home health services, and dialysis facilities.
- THE QUESTION to ask any practitioner or professional. Of course we all know to ask about the risks and benefits of any possible treatment. But there is often so much more that goes into deciding what kind of care, supportive services, living arrangements, etc. are right for aging parents. One way to change the conversation is to ask the professional: What decision would your make for your own mother or father?
- MEDICATION LIST. One of the most important things you can do for an aging parent is to write up a medication list. Have your parent show you the bottles for ALL the medications and supplements they take, both prescription and over-the-counter. List each medication (both brand name, if applicable, and generic name) along with:
- A description (like, round yellow, or white oval)—take a picture if you can and paste it into the document,
- The dose (number of milligrams),
- Number of times and when it is taken each day,
- “Taken with” information (like, with food, not with food, etc.),
- Date started.
- Also list any medications that your parent should NOT take due to allergies, bad reactions, etc.
- Keep a copy for yourself (and send to siblings)—I kept a copy on my phone. Make sure your parent has a copy at home and in a purse or wallet. Send the list to your parents’ physicians.
- Keep the list updated! This is the hard part. Update any changes in dose or frequency. If your parent starts a new medication, add it to the list.
- If your parent stops taking something, cross it out and put the date they stopped. (Keep it on the list, as it may be important to their health history.)
- This list will save you time whenever you are asked about your parent’s medications. It can also be invaluable in case of an emergency.
- ADULT CONGREGATE LIVING FACILITIES (ACLF) are great for parents who need a little more help and supervision but still want to and can live fairly independently. They are apartments, rented by the month (sometimes without committing to a specific timeframe) that include services as part of the rental fee—light housekeeping, one or two meals a day in a common dining room, and daily check-in. If the resident misses a check-in, staff will follow-up to be sure the person is OK. Often, transportation is provided to doctor appointments, grocery stores, and pharmacies. Perhaps the biggest benefit is social—residents see each other at meals, and the facility provides activities (sometimes for an extra fee) both on and off campus. My mother loved the trips to the museum, with lunch at a downtown restaurant. Neither Medicare nor Medicaid pays for an ACLF.
- ASSISTED LIVING provides a higher level of supervision than an ACLF. Residents live in one room (using their own furniture), often shared with a roommate, and take all their meals in a communal dining room. A nurses station is staffed 24/7 with aides, licensed practical nurses, and access to an RN. The staff are there primarily to keep residents safe and for emergencies—the term “assisted living” does not mean that residents receive a lot of assistance. If your parent needs help managing medications, dressing, or getting to the dining room, you will most likely have to pay for these additional services. Neither Medicare nor Medicaid pays for Assisted Living.
- NURSING HOME BASICS. Nursing Homes generally offer two very different services—short-term rehabilitation (or skilled nursing follow-up after hospitalization) for which they are well reimbursed by Medicare or other insurances; and long-term care for which they are poorly reimbursed. Many parents will need short-term rehab and/or skilled nursing after surgery, heart attack, pacemaker placement, or joint replacement. Some parents, without the means to pay for an ACLF or Assisted Living, may need long-term care in a nursing home where Medicaid is accepted (see below). To assure the best care in both short-term rehab and long-term care, use the Nursing Home Compare website (see #2 above), and make sure someone visits often (daily, if possible) to advocate for your parent. Medicare pays part of the costs of short-term rehab (check the Medicare.gov website for details). Medicaid will pay for long-term care in some states, and only when specific criteria are met. The primary criterion is economic need—in order to qualify, your parent must have very few assets. If your parent has some, but not enough assets, be sure to study the rules for “spending down” to a level necessary for Medicaid eligibility.
- HOME HEALTH CARE is just what it sounds like—healthcare provided in your parent’s home. The “home” part means that your parent must be “home-bound” or unable to go out, except to have someone take him/her to a doctor appointment. (Tip: Do not tell the home care nurse that Mom won’t be home because she has a hair appointment.) The word “healthcare” means some kind of skilled nursing (like wound cleaning and bandage changes, intravenous therapies), not simply help with bathing, dressing, or other ADLS (see #10 below). Medicare pays part of the cost of home care, but only after a hospitalization. (Other criteria may apply, so be sure to ask up front about Medicare reimbursement.)
- HOSPICE CARE. For good information about hospice care, go to the website for the National Hospice & Palliative Care Organization. Here are just a few key points:
- Hospice care is provided in a patient’s home—private home, assisted living, nursing home, or any other place your parent lives. Some hospices have “homes” where patients can live, but this is rare. When a higher level of care is needed, the patient can be cared for in a hospital, nursing facility, or hospice inpatient facility, but the hospice must be informed and must manage the transfer to the higher level of care; this is because of Medicare rules.
- Medicare pays for hospice, but the patient must give up the option for hospitalization.
- Hospice Care focuses on comfort—physical, emotional, and spiritual—and is delivered by a team of professionals. Hospice cares for both the patient and the family.
- Hospice Care is designed for people with six months or less to live, but some hospice patients live longer and Medicare will pay for more than six months.
- Hospices send professionals to visit the patient several times a week. These professionals supplement the care of the family (or other paid caregivers).
- Hospice does NOT provide 24/7 care, except in very rare cases of some kind of crisis.
- ADLs are Activities of Daily Living. These are basic self-care tasks, including feeding, toileting, bathing, walking and transferring (such as moving from bed to wheelchair), and dressing/grooming. With few exceptions, neither Medicare nor Medicaid pays for help with any ADLs if this is the only help your parent needs. If your family can pay for help with ADLs, your parent may be able to stay in his/her own home longer with greater safety. There are many companies that provide these services, often along with light housekeeping, help with minor home maintenance, etc. A good resource is your Area Agency on Aging, which has information on a variety of services. Go to http://www.n4a.org where you can put in your zip code and find information on your local Area Agency on Aging.
CARING.COM offers a variety of resources for caregivers including information on how to find and choose supportive services for an aging parent, friend or relative, and for caregivers.