This article is an excerpt from Carolyn Rosenblatt's The Family Guide to Aging Parents.
Helping from a distance can be difficult. Keeping track of aging parents when you do not see them often is a challenge. In hundreds of conversations with adult children and plenty of research on this subject, I have collected a few pointers to help the adult children who live far from their loved ones. A main consideration is safety, and we address that in this chapter. Another consideration is whether there should be a physical move. A third concerns avenues of help that you can find if you have to remain at a distance.
My husband, Mikol, and I are what is called “distance caregivers.” As I’ve mentioned before, my husband’s mother, Alice, is ninety-two years old, lives independently, and still drives. She is hundreds of miles away. So far, so good, but this will not last forever in all likelihood. I will share with you our personal experiences and what we have done to cover our bases in the event of an emergency or mishap. Here are the five points we go into in this chapter. These are things every distant adult child needs to know to be prepared for caregiving.
Plan for your parent’s possible need for help.
Keep contact information for your parents’ friends and neighbors with you.
Consider hiring a care manager to help you.
Insist on having conversations about your parents’ ability to pay for care.
Talk about end-of-life wishes so you can honor them.
I often hear clients who have loved ones in another state, or even another country, tell me their eighty-plus-year-old parent is doing fine, and thank goodness she is so independent. I am as happy for them as I am for my husband and myself that, at this moment, we don’t have responsibility for parent-care day in and day out. But realistically, we do not expect Alice to be perfectly okay until the end of her life. We are in the aging consulting business, and we know of a lot of things that can suddenly or gradually destroy an elder’s independence. We are prepared with numerous alternatives for Alice, and we hope you will be prepared in your family, too. [...]
That brings me to the first thing you need to remember:
Your aging parent will probably need your help at some point down the road, and you need to talk about it and plan for it.
Many people do not want to face the possibility of infirmity and will do anything to avoid the subject. You, yourself, may be uncomfortable with the idea that your parent could become dependent on anyone else, especially you, and you, too, may avoid the subject. The reluctance you feel is natural, but it must be overcome unless you like the feeling of panic and extreme stress better than the idea of getting past discomfort.
Panic and extreme stress are the consequences of an aging parent emergency or trauma—if you are unprepared.
Alice lives about 600 miles away from us. One can’t jump on a plane any hour and get there. Flights are less frequent than they would be to a big city. The only other family member is my husband’s sister, who is two hours’ drive away—and that’s in good traffic. California is not known for good traffic conditions.
One afternoon, my husband’s cell phone rang. He saw that it was Alice calling, and he said, “Hi, Mom.” A deep male voice said, “I’m Officer Smith, and I’m with Alice here. She seems to have fainted, and we are taking her to the hospital.” He said she was okay and responding to questions, but seemed woozy. He told us where they were. He gave the phone to her, and a few words were exchanged just before the ambulance came.
You can’t help but feel a terrible sense of urgency in this situation. What was wrong? Why had she fainted? She had high blood pressure, and we always worry about a stroke. Did she have one? What should we do?
We were partially prepared for this, but not completely. We at least had taken one step that every distance caregiver needs to take, which was to have the names and phone numbers of two of her friends in our cell phone contacts folder. Mikol called Alice’s best friends. They agreed to go over to the hospital as quickly as possible to see her and to let us know what was happening.
We also had the name of a neighbor in our cell phones. Mikol called the neighbor, who kindly went to the emergency room right away and called us to tell us Alice was being seen by a doctor. Eventually, the doctors figured out that she had passed out due to a recent adjustment in her blood pressure medication and that she was okay. She was able to return home that night.
Her friends brought Alice home and checked in on her early in the morning. Being the independent type, she wouldn’t stay at their house that night, insisting that she was fine.
The episode caused us to have many conversations about how to deal with any falls or episodes where Alice might need help immediately. She had an alert pendant (which some call a personal emergency response system), but, of course, refused to wear it. The pendant has a button on it that allows her to call someone if she falls and is conscious enough to push it. Hers has a GPS tracker on it too, so it can be used outside her home, in the car, etc. She reluctantly agreed to make better use of it after that emergency.
That brings me to the second thing to remember:
Have your aging parents’ immediate contacts, friends, and neighbors in your cell phone or mobile device so you can reach them at a moment’s notice.
It could be a call you receive in the middle of the night from a paramedic or from an emergency room. You might be so shocked by a call you receive that you can’t remember where or whom to call. Keep the information in the most likely form for you to be able to find it, even if you are not thinking clearly. “Mom’s Friends” might be the name for a folder where all the necessary information is kept.
You also need to discuss this with your aging parent. Who are the best friends? The most willing neighbors? The closest people able to assist? One thing to keep in mind is that if your parent is among “the oldest old,” his friends might be in the same age group and not able to step in, drive, or be of help to you.
Alice has been widowed for a few years now. She does not want to move closer to either of her adult children, since her friends, her familiar community, and her enjoyment of life is where she is now. What could we do if we needed “boots on the ground” in a hurry or for rehabilitation after an event?
Again drawing on our considerable experience in the field of aging and elder care, I suggested that we get a professional care manager to “be in the wings, so to speak, should we ever need someone to help us with Alice in an emergency.
Most people have never heard of a professional geriatric care manager (PGCM). The field is not one which is licensed, so the title can mean just about anything. There are some ideal standards of what a care manager is supposed to do, but there is no licensing body to ensure that those standards will be met. Because our aging population is increasing rapidly and people are living longer than ever, the need for professional help with our aging parents has created a newer kind of worker. The geriatric care manager is usually a nurse or licensed social worker. However, there are many geriatric care managers who are neither one of those and who have no license in any field. They may or may not have training in gerontology (the study of aging). Some have had a lot of experience in the community caring for their own aging parent, and they set themselves up in the field, since they have learned all the local resources and can be of help in connecting clients to these resources.
A care manager is a person who will interview your parent, assess her needs, and develop a care plan or management plan with you or your loved one. The best managers know a variety of workers and resources to meet the needs they identify in their assessment of your parent. They should know good geriatric doctors, senior centers, and programs appropriate for your parent’s situation.
For example, if your father is getting frail and needs help with chores at home, the geriatric care manager could find and refer you to a competent and reliable home care agency, so your parent could get help at home. If various things are going on at once, the care manager can coordinate transportation, workers, medical visits, and other supports.
When a crisis hits, a nearby geriatric care manager can get to the parent faster than you can if you live at a distance. Further, the care manager can do a lot of preventive care for elders and can promote safety and good quality of life.
That brings us to the third thing to remember:
A care manager can be your eyes and ears nearby your parent.
You will not typically meet a care manager through your doctor or health clinic. You will not find their services covered under Medicare or most other health insurance plans. Payment is out of pocket, and rates vary from place to place and state to state. There is no standardization of their hourly fees. An easy way to find a care manager is through an Internet search, which is how we found one for Alice.
Because no license is required, care managers are not monitored by state departments of health or social services. Yet, this kind of service can make a world of difference in what happens to your aging loved one and how he is cared for. You need to be a good consumer and ask questions when you search for a manager for your parent.
Care managers, even if they are licensed nurses, do not provide direct care themselves. Rather, they are the ones who can see that care is provided. (A licensed nurse can only deliver care through a licensed agency that provides home health care.)
Some of the things a care manager can do for you include the following:
Make doctor and dentist appointments for your elder, and accompany your elder to the appointments. [...]
Interview, screen, and monitor in-home helpers, such as companions, aides, and other workers. [...]
Visit the elder—when you are unable to do so yourself—and report to you. [...]
Act as an advocate for your elder at the hospital, assisted living facility, or other location where your elder may not be able to speak well for herself. [...]
Maintain records your elder may need, such as medical, prescription, financial, or legal papers, and make them accessible to you when you need them. [...]
Help you with the decision to move your family member out of the family home when the time comes, and assist with all the details of moving. [...]
Provide information about social activities, safety, adult day health services, senior centers, equipment, transportation, meals, and other things your elder’s community may offer to enrich and improve your elder’s life. [...]
What Is the Availability of a Care Manager?
The PGCM is typically available to you twenty-four hours a day, seven days a week. In many ways, hiring this kind of assistant for your family is an investment in the safe keeping and quality of life of your elder loved one.
What Are Care Managers Not Allowed to Do?
A care manager cannot give legal or financial advice. Some care managers assist with budgeting and household money management, such as paying bills, and can even help with selling the family home. However, a care manager is generally not a money handler for the elder’s estate and must avoid any impropriety concerning the elder’s finances. If there is no local family member to handle an elder’s finances, it is best to have a licensed professional, such as a fiduciary, do this.
If a care manager takes on the task of paying bills or other chores which permit access to the elder’s bank account or other money, a family member should monitor all financial expenditures. Ideally, this is done online, so that another responsible person can see the activity in any account and can check for questionable activity or mistakes.
Is There Any Way to Pay for Care Management Other Than out of Pocket?
The national range of charges from a care manager may vary from a minimum of $80 dollars per hour to $200 dollars per hour. If your elder loved one has the resources and wants to stay in her own home, this option may help you to accomplish that for your loved one safely. Some kinds of long-term care insurance, especially newer products purchased since 2007, may provide for some kinds of professional care management in the home. Some policies of long-term-care insurance may even provide their own care managers.
Otherwise, care management is generally not covered by Medicare, Medicaid, or private health insurance. The cost is usually paid out of pocket.
How Do You Find a Qualified and Experienced Professional Geriatric Care Manager?
A search in your local community is one place to start. There is also an organization, The National Association of Professional Geriatric Care Managers (NAPGCM), and you can check the website for listings of geriatric care managers. This website enables you to compare and contrast professionals before you contact someone you might want to interview.
The National Association of Professional Geriatric Care Managers is located at:
1604 N. Country Club Road
Tucson, AZ 85716-3102
Telephone: (520) 881-8008
It is helpful to be cautious of any person you hire to help with caring for aging loved ones. Without licensing requirements, there is no criminal background check, fingerprinting, competency requirement, or testing to determine whether the person calling himself a geriatric care manager is actually qualified to do the job properly. Those who hold a license in another discipline, such as nursing or social work, are tested, screened, and checked by the state to establish at least minimum competency for that licensing. [...]
As a retired RN myself, I admit to a preference for licensed nurses as care managers. My reasons are that the person has been vetted and fingerprinted by the state licensing board, and the RN can ask sophisticated health questions, see the known side effects of many medications, and communicate with your loved one’s MDs in a way most non-nurses can’t. If they visit regularly, they can also spot signs of developing health problems that may require attention.
Since my husband and I do not know all the resources in Alice’s area, we went to the care manager website. I looked for Alice’s city, and searched for an RN. I found one and contacted her and asked her to see Alice, who is much more independent than most ninety-two-year-olds. She went and did her assessment, and we expected her to be available in the event of any problem, which was the point of having her. When a problem did come up, we called.
She was out of town. She did not have a backup. She had not notified us. This was very unprofessional.
Although we had gone through the expense of hiring her and paying a sum for her assessment of Alice, she clearly was not going to be there when we needed her—back to the website. We found another RN who gave the impression of being much more responsible. She visited Alice more than once and later updated her information with Alice by phone. We expect that if we need her, she will be there.
Alice, who is stubbornly independent, did not think she needed a care manager and was very reluctant to let us hire one. We paid for the expense to lessen that resistance. To us, after the panicky feelings we had at the time of her fainting episode, it is worth it. The care manager has had little to do, since Alice has not had any emergencies of late, but we feel safe in the knowledge that someone is there if Alice’s needs or situation changes.
Resistance to talking about money creates a serious problem for the adult children of aging parents. As we have described, most of us are reluctant to face the real possibility that we could ever become dependent on others for care or that we will even lose any of our independence. Ignorance about a parent’s finances and resistance to facing the probable need for care is a risky combination. You can get stuck with a sudden responsibility you don’t want or are ill prepared to handle.
This brings us to the fourth thing every adult child must remember: start and insist on the conversations about parents’ ability to pay for care.
Why is it necessary to discuss your parents’ ability to pay for care? Because if you don’t, you may end up in a very expensive mess should a sudden change happen in their lives and you are forced to take responsibility. If they need care and cannot pay for it, they may be eligible for various public benefits. These take time and planning to get, and you might need help on short notice. Planning ahead can make a huge difference in your loved one’s ability to access any benefit for which they are eligible.
For instance, many people do not know about Veterans’ benefits that can help pay for home care or care in assisted living. The information is available for free on the Internet. There are a lot of requirements to meet and many forms to fill out. The process takes months, even when a person is eligible. If you discuss it before the event of any emergency, you have a much better chance of figuring out when and where to apply for a benefit such as this.
The same applies to Medicaid, which is for low-income individuals. Eligibility varies from state to state, and there are numerous eligibility standards that must be met. Planning even years in advance can be a great advantage, if you can look ahead and speak with a lawyer about what your parents need to do to become eligible. But if you never consider that long-term care is a possibility and then find out your parents have little or nothing to pay for it, you could be in a very stressful situation when the unexpected happens.
These public benefits programs are discussed in more detail in the last chapter of this book. For those of you with low-income or limited-resource aging parents, that chapter is one you must read.
Steven is forty-nine, and his father is sixty-nine and divorced. His father has a chronic illness that was initially controlled with medication. Dad was still working full-time and supporting himself. He lives in a different state from Steven. One afternoon, Steven’s father called him to let him know that the medication stopped being effective, he is now ill, and he can’t return to work.
Steven is an only child. He and his father had never had a single conversation about Dad’s finances prior to this, despite the risk of the chronic illness and the risk of Dad at some point being unable to work. Dad can get Social Security, but that will not be enough to live on, much less pay for any kind of care, should he need it.
No advance planning for anything has been done. Steven is totally bewildered by all of this. He now understands that he is probably going to have to help his father, but he has no idea how that is going to work or if he can afford it.
Steven does not have a Durable Power of Attorney for Finances for his father. His father owns a house, but Steven has just learned that Dad has no savings, no retirement account, and no assets other than the house. He needs Medicaid, but did not apply for it. He is ill and will need help at home. How will Dad manage?
Steven has a great deal of work to do in a very short time. He is feeling terrible pressure, and he is angry with his father for leaving him in the position of not knowing anything in advance.
Could this have been prevented? Yes, if both Steven and his father had insisted on better communication and having the necessary conversations about Dad’s finances. There were alternatives available, and things could have been done to protect Dad from being forced into the urgent situation in which he now finds himself. [...]
[...] Talking about your aging parent’s last wishes will make it possible for you to honor their wishes.
If you do not know what your loved ones want as they grow older and they get to the last part of their lives, you may be forced to make decisions for them without knowing for sure what they wanted. Worse yet, if you have no clear direction, the medical establishment will decide for you, and they will do a lot of things most people don’t want done. The following story is an example from my own life.
When my father-in-law, Joe, was in his eighties, I insisted that we have a discussion about his last wishes and Alice’s (my mother-in-law) as well. Did he want to be kept alive by artificial means should he be unable to speak for himself? Would he want to be cared for at home if he had a lingering illness? We went into detail. I made sure both of my in-laws had an Advance Healthcare Directive, appointing someone to be their agent to ensure that their wishes were carried out. They appointed my husband, Mikol, rather than his more emotionally driven sister, to be his agent, as discussed in a prior chapter. That meant it would be his job to advocate for his father’s wishes if it became necessary.
Some years later, Joe was diagnosed with pancreatic cancer with little warning that he was becoming ill. A failed surgery and three weeks later, it was clear that he was failing and was unlikely to leave the hospital. The hospital was a busy teaching facility with many interns and residents learning from each patient’s case. When my father-in-law began to lose ground in one body system, they added more medication. When another failed, they added even more drugs to bolster his functioning.
After speaking frankly to the ICU nurses, it was clear to me that he was not going to survive and that all the frenzy of medication, interns, residents, and other physicians were only prolonging the inevitable. These were artificial means of keeping him alive, the exact thing he had said he did not want. At that time, he was unconscious, attached to a ventilator to keep him breathing, and had eight different IV lines in his arms—all but one of them for things other than pain relief. This was not right. They would have kept it up for perhaps weeks longer unless someone stopped them.
Mikol was struggling, of course. I had the opportunity to speak to him privately and quietly about Joe’s Healthcare Directive. His emotional response was that he did not sign up to play God. I helped him see that God is playing God, “and that all Mikol had to do was to speak up for his father’s wishes and see that they were honored. That meant no drawn-out, futile efforts to keep him going when none of it was going to make him better. None of the physician’s efforts would have stopped the inevitability of his passing. Still, Mikol needed to sleep on it.
The next morning, he called the ICU and spoke to the nurse. A string of more tests, invasive ones, had been scheduled. He reminded them that he was Joe’s spokesperson, and he wanted all but the pain medication to stop. They complied, and the tests were cancelled. The slew of extra IVs was gradually stopped. Joe was able to reach the end of life in a peaceful and dignified way, without the unnecessary interference of useless drugs that seemed to only serve as teaching tools for the medical students.
If we had not had a discussion with Joe earlier in his life about his last wishes, and if we had not been able to advocate for what he wanted, he might have been kept alive artificially for quite some time before they were willing to give it all up. The lesson here is that you need to have the discussion. You need to find out what your aging parent wants. If you do not do so, the doctors and the hospital administration—people who never met your loved one—will be making all the important end-of-life decisions. That may not be what your aging parent wants. I know it’s not what I want.
A lot of people are highly uncomfortable talking about end-of-life issues—last wishes: Those things that your parent actually wants. Sometimes they are so uncomfortable that they avoid it and avoid it and avoid it until it’s too late. Then, you have no guidance. You have to guess, and the doctors in charge might not agree with you. Your other family members might not agree with you, either.
Fortunately, some knowledgeable people have come up with helpful online tools. Best of all, they’re free. The American Bar Association (ABA), the largest organization of lawyers in the United States, has done some amazing work for the public. The problem is that few people know about the work they’ve done. Few people have used the publications that very experienced attorneys have put together and posted after much thought. So, here’s my effort to bring their work to you.
Here’s what we know from research about getting a document done and signed: It doesn’t assure you that what you asked for will be followed. My father-in-law’s case was a good example. He checked off the boxes, signed the document, and did all he was supposed to do, but the physicians still ignored the paper, which was in Joe’s chart at the hospital. We call the document an Advance Healthcare Directive, a power of attorney for healthcare, a healthcare proxy, a living will, and a few other things. No matter what you call it, every state recognizes that you have a right to spell out what you want at the end of your life, and you have the choice to put it in writing. So why don’t people follow the directives?
There are a lot of reasons. Doctors are afraid of getting sued if they let you die without doing things to you to keep you going. They may be uncomfortable with watching a patient die without doing all that they can. The forms themselves need someone to back them up, and that might be you if you are appointed as agent on a healthcare directive. I want to encourage you to have open communication with your aging parent so that you are very clear about what she wants done and not done.
To help with communication and to get you and your aging parent to think this through, the ABA has created a Consumer’s Toolkit for Health Care Advance Planning. You can find it at www.AmericanBar.org under “Resources.”
You can also go to the ABA website and search for “Consumer’s Toolkit for Health Care Advance Planning.” It contains a set of ten tools that can each be downloaded separately.
I like the questions it asks, such as, “Are some conditions worse than death?” and “How do you weigh odds of survival?”
I decided to see if my own adult children could answer the questions about what I would want near the end of life, should I be unable to speak for myself, as Joe was. In the toolkit, there is a Proxy Quiz for family and physician. It has a page of questions about what the family member thinks you would want. They take the quiz and then you see how accurate they were. I gave both my kids the quiz, separately. Both did very well, maybe because I’ve hammered them with this info for some time.
So, even if you feel uncomfortable with bringing up the end of life and last wishes, you can get some really good help from these tools. There are even conversation scripts and ideas for how to deal with your parents’ resistance. I encourage you to use them. Each one is short—about a page or two—and it is in plain language, easy to use and understand. If you need an excuse to get started with the conversation, you can always blame it on me or your attorney.
This discussion is directed at those whose parents do not live nearby, but it can really apply to anyone.
First, we need to expect that our aging loved ones may need help, and we, as adult children, must anticipate what to do when that time comes. Open and honest discussions may not be your aging parents’ strong suit, so starting the conversation might be up to you.
Be ready for the call in the middle of the night or a sudden event when you are too far away to get there fast. Have those local contacts in your own phone or device. Consider finding a professional care manager to help you if you are like I am, with a ninety-two-year-old mother-in-law living 600 miles away. You need to be able to call someone who can get there fast and tell you what’s going on.
All of the services you are probably going to need to make life easier for yourself and your loved one will cost money. The subject of finances has to be discussed, even if your parent resists. It’s up to you to insist on having discussions about whether your parents can afford to pay for care and whether they can meet the eligibility requirements for public benefits, such as Medicaid.
Finally, there is nothing worse than anguish over what to do when your aging parent is near the end of life and decisions have to be made when you don’t know what to do. Free tools from the ABA can help you. We hope that at least some part of this chapter will get the wheels moving and spur some action on your part. I hope this will help you be as prepared for your parent’s changes in health as you can be.
American Association of Retired Persons (AARP). 601 E Street NW, Washington, DC 20049. www.AARP.org.
American Bar Association Consumer’s Toolkit for Health Care Advance Planning. www.AmericanBar.org/groups/law_aging/resources/health_care_decision_making/consumer_s_toolkit_for_health_care_advance_planning.html. Accessed Aug. 1, 2014.
The National Association of Professional Geriatric Care Managers. 1604 N. Country Club Road, Tucson, AZ 85716-3102. www.CareManager.org.
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