Leaving the Room
Separation Anxiety, the Caregiver's Own Life, and What a Fiduciary Actually DoesContents
The Essay
1. Two People in One Room 3
2. A Letter from 1994 3
3. What Separation Anxiety Actually Is 3
4. Leaving Well 4
5. The Bench 5
6. The Caregiver Is the Second Patient 6
7. Two Households 6
8. Medicare Already Agrees with You 7
9. What a Fiduciary Does in This Season 7
10. ALIVE, for Two 8
The Essay1. Two People in One Room
There is a particular moment that nearly every family caregiver knows. You are standing at the front door with your keys in your hand, and the person you love asks, for the third time in ten minutes, where you are going and when you will be back. You answer patiently, and then you answer again. Then you face the real question, which is whether you are allowed to walk out the door at all.
This piece is about that moment. It covers three things: the practical side of separation anxiety in a loved one living with Alzheimer's or another dementia, or in a family member who is physically dependent; the caregiver's own health and why stepping away is an act of responsibility rather than selfishness; and what a true fiduciary wealth advisor and manager does when a family enters this season. It is not medical advice. Diagnosis, medication and behavior plans belong to the physician. This is about planning, logistics and permission.
Let me concede the obvious at the outset. Leaving is hard, the guilt is real, and on some days you genuinely cannot go. Nothing here pretends otherwise. What this piece argues is narrower and, I think, much harder to dispute: a caregiver who never leaves eventually cannot help anyone.
2. A Letter from 1994
On November 5, 1994, Ronald Reagan wrote a letter by hand to the American people telling them he had Alzheimer's disease. Most people remember its closing, about beginning the journey that would lead him into the sunset of his life. Fewer remember two sentences a little earlier: "Unfortunately, as Alzheimer's Disease progresses, the family often bears a heavy burden. I only wish there was some way I could spare Nancy from this painful experience."
Consider what that means. The man receiving the diagnosis, a man who had carried the weight of the presidency, spent part of that letter worrying about the person who would take care of him. He understood before most of the country did that Alzheimer's has two patients.
Nancy Reagan cared for him for the better part of ten years, until his death in June 2004. In 2002 she described it to Mike Wallace of 60 Minutes as "the long, long goodbye." She also said this: "When you come right down to it, you're in it alone, and there's nothing that anybody can do for you. So it's lonely." This was a woman with more resources than almost any caregiver in America: staff, security, money and friends in high places. She was lonely anyway. If the disease could isolate her, you should assume it can isolate you, and plan accordingly.
3. What Separation Anxiety Actually Is
Start with the scale, because it matters. The Alzheimer's Association's 2026 Facts and Figures report estimates that 7.4 million Americans age 65 and older are living with Alzheimer's dementia. More than 12 million family members and other unpaid caregivers provided an estimated 19.6 billion hours of care in 2025, and the Association values that unpaid work at $446.3 billion.
$446.3 billion.
The same report projects paid health and long-term care for people living with dementia at $409 billion in 2026. Set those two figures side by side and the conclusion is hard to escape: the largest dementia care provider in the United States is not Medicare, not Medicaid and not the nursing home industry. It is the family, working without a paycheck.
Now to the behavior itself. Caregivers call it shadowing. The person follows you from room to room, asks the same question repeatedly, and becomes distressed the moment you are out of sight. It is common in the middle stage of Alzheimer's, and it tends to worsen in the late afternoon and evening, the pattern known as sundowning. The cause is neither manipulation nor a judgment about you. As memory fails, the world keeps rearranging itself, and the caregiver becomes the one fixed point in it. Because short-term memory is going, a promise like "I'll be back at four" simply does not hold. To someone who cannot track time, ten minutes can register as abandonment.
This is the key concept, so it deserves room. The anxiety is a symptom. It is information about the disease, not a verdict on your character. Guilt treats it as a verdict, when it is closer to a weather report: it tells you what conditions are like today, and you plan around them.
The physically dependent family member whose mind is sharp is a different case, and he deserves a different answer. His fear is rational. If he falls while you are gone, who helps him up? Reassurance does not solve that fear; systems do. A medical alert device, a written check-in schedule and a named backup who lives ten minutes away answer the question he is actually asking. Ask him what coverage would make him feel safe. He can usually tell you exactly, and being asked preserves the dignity and independence he is afraid of losing.
4. Leaving Well
There is a craft to leaving, and most of it happens before you pick up the keys.
Introduce the substitute while you are still in the house. A new aide or a relative who visits several times while you are present becomes a familiar face before the first departure, and familiarity is most of what the person needs. Keep the routine identical whether you are there or not: the same meal times, the same chair, the same program on television. Consistency is the one medication nobody has to prescribe. Give the person something purposeful to do, such as setting the table, folding towels or sorting coupons, because purpose calms, and it gives you a clean exit.
Timing matters as well. Do not announce a departure hours ahead of time; to someone who cannot track time, advance notice is simply advance worry. Tell them shortly before you go, briefly and calmly. Leave during their best hours rather than in the late-afternoon window when sundowning is most likely. Keep the goodbye short and warm, because a long, emotional exit teaches the person that something is wrong. Many caregivers leave a visible anchor behind: a large handwritten note that says, "I went to the store. I will be back after lunch," or a recorded message the aide can play.
Expect the first few separations to go badly, and do not treat that as proof that you should stay home. When you come back, ask how the hour after you left went, not how the moment you left went. Then apply the test that should replace guilt. The question is not whether they were upset when you walked out the door. The question is whether they were safe and cared for while you were gone.
5. The Bench
A rotation that exists only in your head is a hope. A rotation written on the refrigerator, with names, days and phone numbers, is a system. Families, churches and neighbors can carry more of this than most people expect, but only when someone asks them for specific hours rather than general help.
Paid help costs real money, and the numbers should be said plainly. According to CareScout's 2025 Cost of Care Survey, the national median for adult day health is $95 a day. An in-home non-medical caregiver runs $35 an hour, which comes to about $80,080 a year at 44 hours a week. Assisted living runs $6,200 a month. A private nursing home room runs $355 a day, or about $129,575 a year. Those are national medians; Florida and your own county will differ, so pull the local figures before you plan.
Adult day health deserves special mention because it serves both people at once. The loved one gets a structured day and social contact, and the caregiver gets working hours back.
Here is the strongest point against everything said so far, and it belongs right here rather than at the end. Many families cannot afford these prices. Some loved ones decline noticeably with any change in caregiver or routine, and for them a new face is not a small thing. Neither fact is spin, and neither cancels the argument. For those families the plan starts smaller: a church volunteer, a neighbor, a sister on Tuesday nights, public respite where it exists, and the physician's help in managing the transition. The permission to leave still applies, even when it is an afternoon instead of a week.
6. The Caregiver Is the Second Patient
The Alzheimer's Association reports that 59 percent of dementia caregivers report high stress. When AARP and the National Alliance for Caregiving released Caregiving in the US 2025, the Alliance's president said more than 13 million caregivers struggle to care for their own health while caring for someone else. The Association lists ten warning signs of caregiver stress, among them anger, social withdrawal, exhaustion, sleeplessness, trouble concentrating and declining health. Its advice is direct: if the signs show up regularly, see your own doctor.
Here is the part people miss. A burned-out caregiver does not stop being needed. He becomes the second patient, and the household now requires care for two. Every airline tells you to secure your own oxygen mask before you help the person next to you, and nobody on the plane calls that selfish. It is the only order of operations in which both people keep breathing. Martyrdom, for all its admirers, has never appeared as a line item in anyone's care plan.
Run the caregiver through the five deadly D's. Death: neglect your own health and you risk dying first; spend down your own savings and you risk living too long without the means to do it. Disability: the back injury from lifting or the collapse from exhaustion, after which the question becomes who cares for your loved one. Division: the sibling who was never there and now questions every receipt. Discharge: leaving a job or cutting hours to provide care, along with retirement contributions that are never made up. Destruction: the accident that happens when the driver has slept four hours a night for a month.
This is where permission comes in, and it should be sized to the circumstance. In the early stage, travel together while you still can; this is the season for the trip you keep postponing. In the middle stage, take shorter trips with strong coverage, built around your loved one's routine rather than your own. When a loved one is in residential care, the facility is the staff. Your visits are about presence rather than labor, and the time between them is yours to live. If you are lucky enough to have retired, do things with groups of people you like before it is too late. Caregiving does not repeal that advice. It makes it urgent.
7. Two Households
Picture two households, and understand that this is an illustration rather than a report on real people. They have the same diagnosis, the same stage and similar savings.
In the first, the wife does everything herself. She declines help from her church because accepting it feels like failure, cancels her own checkups, and postpones every plan of her own until "after." Two years in, she injures her back, and the decision about memory care is made for her in an emergency room, on the worst possible day and at the worst possible price.
In the second, the husband does most of it himself, but not all of it. His wife goes to adult day health three days a week, his sister has Tuesday nights, and he keeps his own doctor's appointments and walks every morning. Twice a year he takes four days with friends while a paid aide covers. When a move to memory care becomes necessary, the decision is made at a kitchen table, with the numbers already run.
The diagnosis was the same in both houses. The difference was a plan, and permission.
8. Medicare Already Agrees with You
Somebody else has already reached this conclusion, and it is not an institution known for sentimentality. Since July 1, 2024, Medicare's GUIDE model, short for Guiding an Improved Dementia Experience, has provided up to $2,500 a year in respite services for eligible people living with dementia, through participating dementia care programs. The Centers for Medicare and Medicaid Services scheduled the model to run eight years.
Consider what that represents. The federal government, which does not ordinarily budget for anyone's afternoon off, has put a dollar figure on the caregiver's break. The reasoning is not hard to follow: a collapsed caregiver and a crisis admission cost a great deal more than a few days of respite. When Washington decides rest is the economical choice, you may take that as a hint. The homework is simple. Ask your loved one's physician whether a GUIDE program operates in your area, and whether you qualify.
9. What a Fiduciary Does in This Season
Now to the part I know best. The word fiduciary gets used loosely, so it should be defined precisely. Under the Investment Advisers Act, a registered investment adviser owes clients a fiduciary duty made up of two parts, a duty of care and a duty of loyalty. In its July 2019 interpretation, the Securities and Exchange Commission said the adviser must not place its own interest ahead of the client's, must make full and fair disclosure of conflicts, and cannot have the duty waived. A broker-dealer works under Regulation Best Interest, adopted the same year, which requires acting in the customer's best interest at the time a recommendation is made. That is a genuine standard, it raised the bar, and many brokers are honest people. It attaches to the recommendation, however, and it is not the same as a relationship in which someone is obligated to put you first all the time.
In a caregiving season, that difference becomes practical very quickly. A fiduciary makes sure the legal documents are done while the loved one can still sign them: a durable power of attorney, a designation of health care surrogate under Chapter 765 of the Florida Statutes, a living will, HIPAA authorizations and a review of the trust. The adviser coordinates and the elder-law attorney drafts. That window closes quietly, and nobody sends a notice.
A fiduciary adds a trusted contact to every account. FINRA Rule 4512 requires broker-dealers to make a reasonable effort to obtain one, so the firm has someone to call when something looks wrong. Diminished capacity is exactly when the scam calls start, and the payee line on every check deserves a second look.
A fiduciary models the cost of care against the whole household, not just the patient. At roughly $80,080 a year for in-home care, or $129,575 for a private nursing home room, the question is how many years the portfolio can carry that and still fund the healthy spouse's retirement. The healthy spouse's retirement is usually the one that gets spent. So the plan protects liquidity, meaning cash you can reach quickly for respite, repairs or emergencies. It treats long-term care as a planning problem, which may or may not involve an insurance purchase. It coordinates Medicaid and VA questions, including Medicaid's five-year look-back on asset transfers, with an elder-law attorney before any asset moves. And it keeps the receipts, because under IRS Publication 502, qualified medical and long-term care expenses above 7.5 percent of adjusted gross income may be deductible.
Above all, a fiduciary puts the caregiver's life in the budget. Respite, the caregiver's own medical care and the caregiver's trips are line items, not leftovers. A plan that funds the patient and exhausts the caregiver has failed both of them. When the family gathers, the fiduciary is the neutral party who lays out the same numbers for every sibling at once, because informational asymmetry, where one sibling knows everything and the others know nothing, is where division begins.
What a fiduciary does not do is sell a product to solve an emotional problem. Guilt is not a reason to buy the latest talking head fad.
Let's take a quick break.
Take a look at what you might be paying your advisor, and think about it in relation to the costs you'll face when someone in your family is challenged. A health crisis, long-term care, a loss of income. That's when every dollar matters most, and every dollar you've paid in fees is a dollar that isn't there for your family.
Your typical investment advisor claims to be the person managing your money. Statistically, they're most likely using third-party managers and bundled financial products like mutual funds and ETFs.
Generally, you'll pay about 1.5% a year. Let's drop that to 1.25%.
On $1 million, you're paying about $1,000 a month, or $12,500 a year. On $2 million, you're paying $25,000 a year. On $4 million, you're paying $50,000 a year.
That fee shows up on your brokerage statement, usually as a single line item most people never pay attention to.
I'm the father, the owner and the creator of Fixed Cost Investing. It's trademarked. Nobody else can use that phrase, and if they do, they're going to have trouble from me.
So how much do you save with Fixed Cost Investing? It depends on which of our two programs you choose.
IAM, Investment Advice and Management: 1/14th of what you'd pay on a $4 million account. You heard that right. One-fourteenth.
WAM, Wealth Advice and Management: 1/6th.
And here's the thing: you get a lot of our time every month. Time you're probably not getting from your typical financial planner or investment advisor, who talks a good game, but you don't hear from them. And when you do, they're talking about the same old things.
Our program is the CAMELOT approach: Common-sense Advice, Management, Education and Encouragement, with Logic, Organization and Technology.
It's based on the fact that wealth is more than money, and it's built on decades of experience, stability and capability.
10. ALIVE, for Two
The objective has never been merely to accumulate more money. It is to help people understand their wealth, make better decisions, and use what they have built to live an ALIVE life: Abundant, Longevity, Independent, Vitality, Engaged. In a caregiving season, that framework applies to two people, not one.
Abundant means enough, and used; respite and the trip are exactly what the money is for. Longevity means living as long as possible with the highest quality of life, and that includes the caregiver's own years. Independent means keeping your loved one independent safely and for as long as possible, while keeping a life of your own that caregiving does not entirely absorb. Vitality means strength, endurance, flexibility and sleep, maintained now rather than postponed until "after." Engaged means friends, groups, church and the people you travel with, because caregiving isolates, and engagement is the answer to the loneliness Nancy Reagan described.
Wealth is more than money. In this season, money's job is to buy time, safety and rest for two people.
Go back to that letter from November 1994. A man facing one of the hardest diagnoses there is used part of his last public message to worry about the person who would care for him. He wanted Nancy spared, and he could not arrange it. You can arrange more of it than he could. You can build the bench, write the rotation, run the numbers and put your own rest in the budget. Then you can stand at the front door with your keys, answer the question one more time, and walk out, knowing the person you love is safe and that you will come back rested.
My friends, that door opens in both directions. Leaving well is how you make sure you can keep coming back.
Think about it.