Are you in need of an elder care agency for a loved one, but don’t know what you should be looking for? I’m here to help you get started.

A few years ago, when my father began to experience cognitive decline and difficulty with organizational and household tasks, he was diagnosed with Alzheimer’s disease. He became anxious when left alone, even for a short amount of time, so my family decided to hire a home health aide.

The agency we chose didn’t charge too much for caregivers, and they could take him out to lunch or to do errands. But personalities between my father and the few caregivers on staff didn’t mesh, so we hired a different agency about a month later. These caregivers lasted six weeks before they burned-out. After a lot of research, we found a larger agency with several caregivers and years of experience caring for people with Alzheimer’s. Because of reasons too complicated to discuss here, it took more than a year before the agency found a few caregivers that my father felt he could trust. And, in the event of illness, there was a large pool of others to fill in. The agency assigned a nurse case manager to oversee the caregivers, to trouble-shoot glitches in schedules, and to coordinate medical appointments. More than two years later, due to policy changes and poor communication from management regarding updates about my father’s condition, we fired them and hired another agency. That was about a month ago and, so far, things are working out well (I’m keeping my fingers crossed).

If you’re in search of an elder care agency, I’ve gathered a list of questions to ask whoever is in charge. But, first, it’s worth noting that private home care agencies are for-profit businesses; they’ll work hard to convince you that they’re the best ones to oversee the care of your loved one. So, before signing your name to a contract of any kind, think of the following as an interview – you do the interviewing:

1)  “Does your agency accept Medicare?”

If the services being provided are for activities of daily living – bathing, dressing, feeding – Medicare will not pay. They will only pay if skilled services like dressing changes or physical therapy are needed. Most likely you, or whoever is receiving care, will either have to pay out of pocket or use long-term care insurance, if you are fortunate enough to have a policy (see #2).

2)  Is your agency registered with the state?

Long before he was diagnosed with Alzheimer’s, my father  bought long-term care insurance, in the event he would need care for an indeterminate amount of time. His policy doesn’t cover the cost of care with agencies not registered in the state in which he lives. I didn’t know this until after we hired the second agency, which was not registered. But Long-term care polices can be costly. I recently learned that most companies no longer offer insurance because they don’t have enough funds to pay benefits; however I heard that New York Life still does.

3)  Does your agency meet federal requirements for safety and health?

4)  How long has your agency been in business and do you have experience caring for people with Alzheimer’s, etc.? What are the primary services your agency provides?

5)  How experienced are your caregivers? Can I see references?

6)  How often do you conduct performance reviews? How are your home health trained, and how do you monitor their skills? Are they licensed? How do they handle emergencies like choking or a heart attack? Are they trained in CPR?

7)  Are caregivers able to drive clients to appointments, to lunch, etc.?

8)  Is there a lot of employee turnover? If so, why?

9)  Are you affiliated with local hospitals? If so, which ones?

10) Do you have case-managers? How often do they visit clients? Will they go to medical appointments? Are they available for emergencies? What are the fees for these services?

Depending on the agency, the fees can range between $125 and $165 per hour. Though it’s expensive, if your family can afford it, it’s worth it.  Case managers help coordinate all aspects of care, including assigning caregivers, and following-up with physicians. And they advocate for their clients.

11) What are the fees for caregiver hours?

12)  How often do you bill? Do you bill directly to long-term care insurance companies, or do clients have to pay upfront?

13)  How do you communicate with family? By email and/or phone. How often? Who are you allowed to speak with? All family members, or just a designated individual like a health care proxy or legal guardian?

If you’re the one designated to speak to the case manager and other staff, I urge you to remind them to send you updates on a regular basis, otherwise they will forget. Remember, you are your loved one’s voice.

Feel free to offer feedback.

Good-luck!

Most of us avoid talking about death. The topic is not, well, the most pleasant one to address because, inevitably, it means a discussion about what happens before we breathe our last breath. Dying. That’s the part of the conversation where you say, “I hope I go in my sleep,” or “I hope it’s quick and painless.”

Since we can’t run away from dying or lock it up in a closet – sorry – I thought I’d share what Atul Gawande has to say about it in his latest book, Being Mortal. He takes an anxiety-producing topic and fearlessly broaches it through mind-boggling research and affecting stories. Though, I should warn you, the book is not emotionally easy to read. The stories come one after another: Alice’s frequent falls and car accident, Bella’s descent into blindness, Ruth’s stroke, Sarah’s lung cancer.

For much of history, death just happened. People literally dropped dead: you had a sore throat, and the next day you died. Our bodies didn’t “crumble” over time like they do now, thanks to advances in medical technology (28).  We have antibiotics, breathing machines, intravenous fluids, dialysis, chemotherapy. There is always one more drug, one more experimental therapy a physician can pull out of the medicine cabinet to keep you alive, even if it’s only for a few more weeks. Physicians, especially surgeons like Gawande, are trained to fix people. But, in doing so, are we causing more harm than good? Are we denying the aged, and terminally ill, sought after comfort?

But some people are willing to do anything – surgery, take pills – with the hope of maintaining independence, but, as Gawande says, “what do we do when it can no longer be sustained (23)?” Perhaps your parent has have lived on her own for the past fifty years, tending the garden, walking the dog, driving to the grocery store, and so on. But now, due to poor balance and a broken hip (FYI: about 350,00 Americans fall and break a hip every year), she can no longer engage in any of those activities. She can no longer safely cook her own meals or walk to the bathroom. She needs someone to be with her, 24/7. How do we keep the aging population safe while, at the same time, foster their independence? Who will be the one to care for our frail grandparents, parents, or spouses? These are just a few of the difficult questions that lack a single-dose answer.

Through interviews with patients, his dying father, other physicians, and proponents of institutional change, Gawande, and readers, learn that the “sustenance of the soul” is possible through imagination: community co-op living, mobile teams to check in on the elderly, and greenhouse living – long-term care facilities designed to look like a home (128). He debunks the myths of hospice – to do nothing and “let nature take its course (160).” If anything, hospice allows the aged and ill to live a bit longer in their own homes by fostering patient dignity and autonomy.

How all of this comes to fruition may not sound so simple, but Gawande guides us, with a cheat-sheet of questions to ask those who are dying:

1)   What do you understand about your illness, or prognosis?

2)   What are your fears? Goals?

3)   What do you care about?

4)   Given the circumstances, what trade-offs are you willing to make?

5)   If your health deteriorates, how would you like to spend your time, and whom do you want to make decisions for you?

Medicine is not only about repairing people’s hearts or fixing their broken bones.  It’s about maintaining an individual’s well being, emotionally and mentally. It’s about helping human beings live meaningfully by encouraging them to be the author’s of their own lives, up until the very last sentence.

Gawande, Atul. Being Mortal. New York: Metropolitan Books. 2014. Print.