Before memory fades: Why families can’t wait on estate planning after this diagnosis

Gene McMurtrey rides his bike for hours at a time, sometimes pedaling 50 miles by himself. It’s a source of pleasure and freedom that he doesn’t just enjoy but really needs. Many other aspects of his life have changed in recent years in sometimes worrisome ways.

Always an avid reader, he doesn’t settle in with a book much now. He doesn’t do puzzles like he used to, either. And although he and his wife, Terri, still tackle home projects, it’s harder for him to be a handyman than it used to be.

Three years ago, Gene McMurtrey, now 63, was diagnosed with early stage Alzheimer’s disease, which has progressed slowly. He can still drive legally, but with some restrictions on his driver license. He’s not allowed on the freeway. He mostly drives the couple of miles to the Costco near his home.

While the disease itself and the life it will introduce is unpredictable, there’s one area that’s very much in the McMurtreys’ control because they tackled it early. Before he’d been diagnosed, the couple had made an appointment to meet with an attorney for estate planning. They’d discussed what they both want and how they will divide their belongings among their four children. They have requisite paperwork telling who will make decisions for them if they can’t. They met with the lawyer just days after he was diagnosed.

Gene’s diagnosis didn’t change what is, for many families, one of the biggest challenges, with or without a disabling disorder. But a diagnosis like his can add layers of complications to estate planning if left for later.

It can become a cautionary tale.

The McMurtreys are far from alone as they face this unpredictable medical future. There are 38,300 Utahns among 7.4 million Americans living with Alzheimer’s disease, per the Alzheimer’s Association. Another 118,000 Utahns provided roughly 150 million hours of unpaid care for loved ones last year.

Deseret News wondered what estate planning looks like with a degenerative mental condition. So we asked some experts.

‘Preserve the person, then the assets’

“You can never plan for everything you need to, so you may be disappointed,” said Maureen Henry, a Salt Lake City attorney and research scientist who specializes in aging issues, including for those with dementia. She’s a principal investigator on a grant on inclusive decision-making involving those with neurocognitive decline.

Henry said people believe that if they have advance directives and a power of attorney, all will go well. That doesn’t solve everything. “Sometimes they do, sometimes they don’t. People are contextual,” she said. “With a deteriorating condition, your context is going to change — that’s true even for people who don’t have dementia.”

Klea Harris of Pleasant Grove has a law firm called Angel Advocates, with the slogan “Where law meets love.” She works with individuals who have Alzheimer’s or a similar issue, with caregivers and what she calls “solo agers,” which may just mean someone who lost a spouse and whose relatives don’t live nearby.

Harris said to preserve the person before you preserve the estate. Well beyond property and wealth, “arguably the key possessions that risk being lost are the stories and voices of those involved. Life is made up of small moments and once those opportunities are gone, they’re gone forever. But when a client has completed a legacy interview, the difference is remarkable. One of the first things we miss when someone dies is their voice. To be able to hear it again, to see them laugh, to see their expressions, is an incredible gift.”

She added, “I especially love recording married couples together. Most of my clients have been married 40, 50, even 60 years. To watch them interact, tease each other and express affection creates a beautiful gift for children and grandchildren. It’s a quiet message of hope about what love can look like over a lifetime.”

Henry’s dad had mild to moderate dementia as he did estate planning. She videoed him answering basic questions: If you have a heart attack or stroke, do you want to be resuscitated? He wanted to die before he hit the sidewalk. A year later, his answers had changed. “If there’s a chance, I want the doctor to try.”

“Accept that things will change and you have to adjust in most cases. I would say it’s much more important to have conversations like I described than to fill out forms. The vast majority of things that come up are not addressed with a directive. You need values and preferences — what would I want? What would I definitely not want?"

Henry counsels families not to overthink what doctors say about capacity: “He failed this, you need to take away that. You need to make his medical decisions.” Family or friends should support the person with dementia in doing what they want to the point that’s possible. They will all be better for it. Taking away control is not good for people. She refers to “dignity of risk.”

“We all make decisions as we carry on our lives that carry risk. Support the person and their capability, actively engage them throughout the journey. Their mental health will be better and they will maintain function longer if they are able to use it,” she said.

Henry noted, too, that only half of people with mild cognitive impairment develop dementia within about five years.

Harris uses what she calls a living care plan, very similar to Henry’s father interview. She asked her grandma, “What do you like for breakfast?” and got the recipe for her green smoothies. She asked what kind of birthday cake she liked and learned “it’s not my birthday if I don’t have pecan pie.” She learned grandma loved “Big Joe’s Polka Show.” They piped a separate cable to her room because the facility she was in had a cable provider that didn’t carry the polka show.

Making decisions

Lindsey Daugherty’s title is head of operator advocacy for Sage, which creates tools for caregivers in facilities. She believes that all aging — not just Alzheimer’s — is “still a denial moment” in society. Families tend to excuse or deny what’s happening until there’s a crisis big enough to create a flurry of paperwork.

Daugherty said when they move into caregiving facilities, most people have a living will and power of attorney. A small percentage are totally unprepared, but even those who have done some planning may lack elements. She admits it’s hard for family to know when to step in. Alzheimer’s can be obvious one week and subtle another, at least in early stages. A family that is very involved is more apt to see it than others.

Harris said it’s crucial to do estate planning early, as Gene and Terri McMurtrey did. “We can’t do any kind of document design or drafting if the individual has lost capacity.”

If you want someone who is not related to make decisions on your behalf, you definitely must do the paperwork, Henry said. She noted you can change your mind about your agent even if you have dementia. The standard for appointing an agent is much lower than to engage in complicated medical or financial transactions.

An agent’s job is to make the decision you would have made under the circumstances, not to do what they think is best for you, she said. That helps families. “When we tell people, make the decision you think dad would make, it’s easier than ‘I have to decide whether my father should die.’ The focus is what he would want.”

For actual estate planning, the issue is simple. Make a will. Do you know who your family is? Do you know the stuff you have? Identify important people in your life and understand the relationship and have a sense of what you have and what you want to do with it, said both Harris and Henry.

Legal capacity to make a will is pretty low and someone can change their will after they have dementia. But if you have a nontraditional family or specific preferences, better to do it early on, Henry said.

Generally speaking, simple may be better, she noted, but there are exceptions. If you don’t have a will, your property will go to your spouse. Next it would be divided equally among your children. If you have specific things you want to designate, you want a will. Especially if there are things your children will fight over. “It’s always better to be really clear and make sure everyone’s on the same page and understand,” Henry said.

Harris adds that when planning for a child who has a disability or in other complicated situations, you need a professional review.

You should always ask someone you’re naming in an estate plan, like an executor or your power of attorney for health, if they are willing. If the person doesn’t want the job, an alternate would have to volunteer or be appointed. Henry said you can explicitly exclude someone from representing you, as well. She recommends a power of attorney for finances.

Harris meets alone first with clients who want someone with them for estate planning to be sure they understand why they are there and are not being coerced.

There’s a risk, however small, that if someone has been diagnosed with a form of dementia, a grumpy relative who doesn’t like what he or she received will claim the person was incapacitated. Occasionally, Harris has had to have a doctor test and certify a person had capacity on the day the estate planning took place and again on the day of signing to make the plan pretty much bulletproof.

Most people use Physician Orders for Life-Sustaining Treatment when it comes to medical wishes. Harris recommends placing it on the fridge; that’s where first responders are trained to look. Find a way to let your paperwork be found in an emergency, especially if you happen to be alone at the time. One client who often rides bikes wears a flash drive on a chain.

You can ease some challenges by putting different people in charge of different legal roles. Think asset advocate, healthcare advocate, funding advocate, legacy advocate, philanthropy advocate, Harris said. Those are roles you play in your own life that, should you become unable, could be designated for someone to support you. Just make sure those designations play to others’ individual strengths.

Power of attorney

Paying for care is a big question and so is the division of assets, especially for second marriages.

Harris says not to make major asset transfers during a crisis without qualified legal advice. And know financial exploitation can happen within families.

With healthcare, Utah has a statutory list of who gets to make decisions if you don’t have an advance directive. Some states don’t have that default. And there’s no list for finances. If you don’t name someone, you have to go to probate court to have someone appointed. To avoid that, get a power of attorney. If a family member is making decisions, have them do it as the power of attorney, not informally by putting their name on your bank account.

Do not, both lawyers emphasized, put the title to your house in your children’s names so they can inherit without probate. One of Harris’ clients thought it would transfer after she died. It transferred immediately. Then the children second-guessed any dollar she spent and wouldn’t let her make related financial decisions. One petitioned for and got conservatorship and guardianship. They ended up in court with five attorneys between them to sort things out over years.

You can’t just untransfer the deed to your house.

Henry tells of a woman who put her house in her daughter’s name. In the daughter’s divorce, the son-in-law claimed it was community property. It cost her $20,000 in legal fees to fight him.

They also say don’t put your kid on your bank account. If you have a trust, put it there, which gives them equal rights to the bank account.

Daugherty said it’s a mistake to “parent” someone who is older just because they have dementia. Be an advocate instead. The person will better relate and will still be able to feel a sense of control.

She is adamant that “the parent role will be perceived wrong every time.”

Between spouses, she said a woman is more apt to act like a parent. “I think that’s because a wife innately is a mother.” That may go a little better because a husband is probably a bit used to being mothered. That’s not true when kids do it.

It’s also important to recognize that changes in personality are the disease and are not personal.

Situations and legal opinions vary

Henry tells her clients to avoid trusts if there’s a chance they’ll need Medicaid to pay for long-term care. To protect assets from Medicaid state recovery, the trust has to be irrevocable. And if you need Medicaid within five years, you may not qualify.

Henry said for people who don’t have large estates or for people who have simple estates, a trust may not simplify things. Trusts may be needed if there’s a taxable estate, if a married couple has children with different parents, or out-of-state property, among other reasons. She warns they can be vehicles for financial exploitation and are complicated. For them to work, you have to title everything in the trust. If you don’t transfer everything into the trust individually, the trust doesn’t include it.

But Harris notes there are many, many exceptions, families are litigious and without carefully crafted documents, you may not get the result you want absent a trust. She disagrees with Henry on some aspects of a trust, calling it a “gold standard in incapacity planning.”

In the case of a special needs child, second marriages, incapacity planning, a need for privacy or asset protection for beneficiaries, you need a trust, she said. You can even use a trust to incentivize gaining certain skills or preventing certain things so the child inherits in a safe way. The trust can be a way to love and protect your beneficiaries at the time when you’re not there, Harris said, adding a good attorney will look over your plan and family situation and tell you whether your plan works.

For both bank accounts and real estate, some states offer a transfer-on-death option. Some even have powers of attorney and transfer-on-death paperwork you can do yourself, Henry said.

She warns against going online and getting a form from a nongovernment entity.

Banks may require a power of attorney form they produce. But you often can’t do it preemptively before you lose capacity, Harris said. It must be done when need arises, but by then you’re incapacitated. If you put an account in the name of the trust, the trust incapacity provisions prevail.

A will can be challenged, while a trust lets you pass assets outside of the court and it can be handled more discreetly. It’s harder to challenge a trust than a will.

“It’s not about trust being about the amount of assets you have as much as it is about family relationship complexity and incapacity planning,” Harris said.

There are challenges. For married couples, the surviving spouse becomes the trustee and administers the estate. But giving full power to the surviving spouse in a second marriage is a great way to ruin your relationship with children from the first, she said. In one option, the deceased spouse’s portion is held in trust and used for the benefit of the surviving spouse, but the ultimate beneficiaries remain the individual that they had agreed on, most likely their children.

You can put a mandatory prenup in the trust, too, and make the trust itself the bad guy.

What’s most important is doing something while you can.

“A dementia diagnosis reminds us that time is limited,” Harris said. “While we cannot control the diagnosis, we can use the time we have to preserve memories, strengthen relationships and create systems that support dignity, safety and peace. These are a few of the considerations that become incredibly important once a dementia diagnosis enters the picture.”