Everybody ages
A local family whose out-of-state, 
single father developed dementia ran 
into numerous obstacles on the path to getting him the help he needed, but refused. We bring you his story, and advice from local experts on handling 
similar situations.

Role reversal
When illness changes the dynamic 
between parent and child, 
it can be stressful and costly – 
in more ways than one
By Sarah Wesley Lemire

Several years ago, David Simmons (who asked that his real name not be used) received a phone call that would change his life.

The call was from a relative concerned about Simmons’ father, Bill (also a pseudonym), who had undergone knee surgery one month earlier. After telling David he was going for a drive to look at the fall foliage near his home in Maine, the retired florist got into his car and ended up in Texas. His unannounced appearance on a cousin’s doorstep, in a belligerent frame of mind, was the beginning of a harrowing string of events involving a car accident, a vehicle repossession and a wacky investment scheme that would require the son to take control of his father’s affairs.

For many middle-age children of elderly parents, elements of this scenario may sound all too 
familiar.

For some seniors, problems arise slowly – 
forgetfulness, medical issues, the inability to perform certain tasks or personality changes. Other times, a fall or illness can change the situation from “normal” to “critical” in an instant.

At best, it can be stressful for their adult children – physically, emotionally and financially. For some, the situation can take on nightmarish proportions. The worst part, for many, is not knowing where to turn for help.

The elder Simmons, 86, who lives alone in coastal Maine, began behaving oddly several years ago. Unfortunately, no one had any idea that the subtle paranoia he was beginning to exhibit was one of the first signs of a rare condition called Lewy body dementia.

“I wish there was some way I could have intervened or seen the signs, or known my father was heading down this road a year earlier, but I just never, in my wildest imagination, thought this could happen,” his son said.

The first indication that something wasn’t right came when his father, without basis, became 
convinced that his camera had been stolen by his son-in-law, an Australian native, and that the camera was now in Australia. He was obsessed over the so-called theft. “He told me that if I didn’t believe him, there was going to be a problem between the two of us,” his son said. “I heard about it almost every night for about six months. He’d call me and go on about it. I tried to rationalize with him, but there wasn’t any talking to him.”

And while Simmons was concerned, the older man was otherwise lucid and functional. “Dad seemed OK with everything else. He was handling his life well. He was doing fine.”

Soon after that, his father underwent knee replacement surgery, and Simmons, who lives in Glastonbury, went to Maine to help while he convalesced. While there, he saw a very different man than the one he had known growing up. “He was very, very belligerent and sort of out of control with his temper. He would yell at the visiting nurses and therapists. He would yell at me.” But at that point, Simmons assumed that the surgery and recovery was responsible for the outbursts.

But it soon became painfully obvious that something was, in fact, very wrong with his father.

A few weeks later, the older man called his son and said that he was going on the trip to “look at the leaves.” It was fall and Simmons had no reason to doubt that his father was embarking on a short sightseeing excursion. But a week later, he received the phone call from the relative in Texas. In utter disbelief, Simmons asked the relative to put him on a plane back to Maine, but the request came too late. His father had already left and no one knew where he was.

In the months following the incident, Simmons was able to piece together the details of the story. His father apparently had been corresponding with a widowed second cousin in San Antonio, trying to persuade her to live with him in Maine so that they could support each other financially. The cousin refused the offer and began sending the letters back, unread. Convinced that he needed to see her in person, he lied to Simmons and proceeded to drive 2,800 miles to Texas to plead his case in person. When he arrived, hostile and demanding, the surprised and angry relatives of the cousin asked him to leave.

Simmons soon received a phone call from his father, who said he was fine, and was currently in Oklahoma but was coming home. What Simmons didn’t know was that his dad had been in an accident, for which he was responsible, and that his vehicle had been totaled. He was loaned a rental car, but for local use only. He promptly drove back to Maine. The rental car was parked in his garage for months before anyone realized it was there, or learned the circumstances.

Eventually, the vehicle was confiscated by the local sheriff. It cost the family more than $6,000 in fees.

Because Simmons and his sister and brother had no idea what had transpired until months after it happened, they were also not aware that their father was plotting a get-rich-quick scheme. He had cashed out his life’s savings and purchased a parcel of land for twice its value, with the intent of blackmailing the owner over easement rights.

Finally, after the father called his son at work and threatened suicide, Simmons and his siblings were able to get outside help involved. Their dad was hospitalized and tests confirmed that he was suffering from Lewy body dementia.

According to the Mayo Clinic, the rare brain 
disorder presents with symptoms similar to Alzheimer’s and Parkinson’s disease. It causes 
hallucinations, delusions and confusion, tremors and rigid muscles. Only 1 percent of persons over 65 are affected by the disease.

In the four years since all of this began, David Simmons, who is married with a young daughter, has been dividing his time among his family, his job and his father, who lives five hours away. The older man is now bedridden and requires 24-hour care. In order to provide for his father’s ongoing medical needs, Simmons has taken proprietorship over his father’s estate, bills, and in essence, his entire life. He had to cash out his father’s life insurance and take out a reverse mortgage on the home in Maine. The son also has maxed out credit cards paying insurance and medical bills, and waiting for reimbursements, which can often take weeks or even months. It is, he said, a full-time job.

The younger Simmons travels to Maine as often as he can. While it would be easier to move his father closer, he feels his dad would be traumatized if he were forced to move from his home. “He’s still very cognizant of what’s going on. It’s strange, because it’s not like he doesn’t recognize you. He knows who everybody is. You can ask him his Social Security number, you can ask him where he keeps something. He has his memory, but he [isn’t rational.]”

Other options simply aren’t acceptable to Simmons. “The last place I want to put him is in any kind of home or facility. He’s happy where he is.”

In addition to the financial and logistical elements of caring for his father, there is also the emotional component of coping with the harsh reality of who his father has become as a result of the dementia.

He also wishes that he had had more knowledge and resources to help him through this process. “The stress of not knowing what to do [is difficult]. It was a learn-as-you-go type of thing for me, and I think a lot of people do that because you’re not expecting it. Unless you know someone who has gone through it, you don’t know what your options are, and you [may not even think to] get advice from anybody. You try to do it on your own.”

Finding answers
Getting older can present a 
variety of problems for seniors 
and their caregivers, but help 
is close at hand
by Carol Latter

When parents begin to show signs of aging, many adult children are reluctant to address the topic, for a number of reasons. Some worry that they’ll hurt their parents’ feelings by bringing it up, or they anticipate a negative reaction. Others may be in denial, uncomfortable contemplating the fact their parents are becoming frail, or are less able to cope with the tasks they’ve always handled.

For seniors, frustration over newfound limitations can be complicated by a fear of losing their independence and control over their lives.

The net result, in many cases, is a failure by parents and their grown children to communicate on a critical issue: the inevitable aging process. But avoiding that issue can eventually lead to a crisis situation where decisions must be made under duress, with everyone involved feeling stressed, overwhelmed and upset.

Julia Evans Starr, executive director of the Connecticut Commission on Aging (CoA), said a variety of problems and challenges can arise as a person grows older, whether those problems creep up or occur suddenly as a result of a fall, a car accident or an unforeseen health crisis. Decisions must often be made about where and how a parent will live, how they will get around, what supportive services they’ll need, and whether they are able to manage their own medical, legal and financial affairs. Families dealing with dementia, whether it involves forgetfulness or extreme personality changes, face especially harrowing problems.

For adult children already juggling jobs, kids and other commitments, dealing with these issues can seem overwhelming.

Starr said families who have conversations about the parent’s wishes before these kinds of issues ever arise will likely find the aging process far less stressful. For years, CoA, an independent state agency, has been “trying to encourage adult children and older people to have these conversations earlier rather than later. What are the wishes of the aging parents? That should be number one, and that’s an easier conversation to have when people are at a healthier stage in their lives. Planning ahead is very important, so [age-related problems] don’t become an issue all at once. It seems so obvious, but it’s often overlooked.”

Molly Rees Gavin of Bristol-based Connecticut Community Care (CCCI), couldn’t agree more. The president of the state’s largest care management service for the elderly and disabled said many adult children feel they have to wait for the perfect moment or sit their parents down for a formal “talk.” A better approach is to simply use casual conversation as a way of exploring what may happen in the future. She advises people to “take advantage of every opportunity along the way to inform yourself about your parents or grandparents, and what it is that they want.”

Several years ago, she recalls, a California senior crashed his car into the front of a supermarket, killing several people. It was all over the news for weeks. “Picture yourself watching TV with your dad. What a moment to be able to say to him, ‘Gee, Dad, if I ever started to notice any changes in your driving, what would you want me to do about that?’ Hopefully at that moment, there’s nothing wrong with his driving, but it helps to look ahead and discuss when it may be time to stop driving – probably one of the most difficult situations older adults face.” She said similar talks can be started about housing options, in-home services, medical care, and legal and financial matters.

Gavin said many people freeze up at the thought of dealing with these things, “but if there’s one thing I would say to adult children, it’s that, generally speaking, we won’t and we can’t get it right the first time.” The important thing is to begin.

Two additional factors make waiting too long a bad idea.

First, the CoA has been working for many years to advance legislation that would make it easier for seniors and their loved ones to deal with age-related issues and access the services and help that they need. But the state system is still “complex and challenging to navigate,” according to Starr.

A broad range of services is available but you have to know where to find them – and not everyone is eligible for free or low-cost assistance. Finding the appropriate supports is easier when a parent is not already in crisis.

In addition, families need to think about how elder care costs will be covered, whether their loved ones will remain at home or move into some kind of supported living environment.

Marlene Kurban, director of Care Management Associates, the private pay arm of CCCI, said while older adults are statistically likely to develop “a frailty or other condition that will make it difficult for them to stay at home, sometimes people don’t understand that Medicare won’t pay for their nursing home stays long term.”

And then there’s the whole matter of honoring a parent’s wishes regarding their care. A recent study by the University of Connecticut showed that 80 percent of people expected to “age in place” by remaining in their homes or communities. Many seniors are emotionally attached to their homes and are reluctant to give them up.

Unfortunately, the bulk of Connecticut’s Medicaid funding for elder care is geared toward placing seniors in nursing homes or other assisted living situations rather than helping them stay in their own homes, Starr said.

“Oregon is a really progressive state. Medicaid pays for long-term care, and 85 percent of Oregon seniors receive services in their homes and communities with Medicaid dollars,” she said. “If we had a similar structure, we would save about $600 million a year, in addition to letting people age in their homes and communities. It’s really a win-win.”

Kurban said the state’s Connecticut Home Care Program “is a good program but it’s not widely known, and there’s a lot of work to be done to shift resources to community-based care. It’s a process that’s started, but it has a long way to go.”

For families, that means more legwork is required to keep parents in their homes.

The good news is that, although many people feel they don’t know where to turn when they need help with a parent, there is plenty of assistance available to make life more manageable for both seniors and their caregivers.

Just one example is CCCI, which helps seniors live safely and independently, for as long as possible, by offering a wide range of programs. The private nonprofit’s services can be accessed in one of two ways. Seniors must qualify for the state-funded program, The Connecticut Home Care Program for Elders (CHCPE). The Care Management Associates (CMA) program is a fee-for-service program open to everyone.

Lawyers specializing in elder law are another great resource, offering services and advice that can help seniors manage everything from bill-paying to getting a will or power of attorney drawn up.

Connecticut has five Area Agencies on Aging that offer programs and services for the elderly and their caregivers, including a statewide respite care program. Countless other resources are also available, including the Alzheimer’s Association, the AARP and Infoline.

Gavin encourages people facing elder care problems to reach out for help and support, whether it’s from professionals or from family and friends. Often, adult children in this situation feel they can’t talk about it, making an already difficult situation worse. “In our society, it’s one thing to go to a cocktail party and talk about your toddler wetting the bed. It’s quite another to talk about your parent wetting the sheets because they’re incontinent,” she said. “So many people perceive elder care as an extremely isolating situation, and it doesn’t have to be that way. I tell people, ‘You’re not in this alone.’ ” HM

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