Not only was Nicole Smith blindsided when her mother was diagnosed with dementia in October 2021, she felt powerless to offer assistance while living on the other side of the country.
She lived in New Jersey, while mom was in Los Angeles. As the situation snowballed into a giant, confusing mess, Nicole started looking for answers. She discovered there were plenty of books talking about dementia, but the resources she wanted just weren’t available. She needed help caring for a parent with dementia.
“As I was going through this process, I documented what was happening and how it was impacting me. Writing was a way for me to release the tension I was feeling at the time,” Nicole explained. “I later turned those writings into a resource to help people contend with the issue.”
Although she had relatives that lived a few minutes from her mother, much of the decision-making responsibility fell on Nicole.
“There were a lot of family dynamics that came into play. Add into the stress of COVID which brought all five of our children home during the pandemic, and my stress level was rather high,” she explained. “Fortunately, my husband was about to retire and he became a source of strength for me.”
Establishing a baseline
The first thing Nicole had to do was get an assessment by a neurologist to establish a baseline in order to track her mother’s decline.
“We really needed to figure out how bad her condition was to get an idea of what to expect as it progressed,” she explained. “Then I started making a list of all the financial, legal and medical issues that would need to be addressed. I knew nothing about any of that and had to ramp up my understanding rather quickly.”
Nicole hired an elder law attorney who specializes in elder issues who was able to offer some advice. Fortunately, she had a good relationship with her mother’s older sister, who had been a nurse for more than 50 years.
“She and I were absolutely caregiving partners through this whole scenario. We made a good team in that we were able to support and encourage each other,” said Nicole. “As you go through this experience, it is absolutely important that you manage your own mental health, too.”
Caring for caregivers
A lot of attention is given to patients experiencing dementia, for good reason. They are, undoubtedly, confused, scared and even angry regarding what is happening to them and around them.
But, people who care for dementia patients often neglect their own mental health, and that just works to make a bad situation horrible.
“It is a very difficult time, and a lot of emotion comes with it,” said Nicole. “Every person with dementia presents different challenges. There are so many different kinds of dementia, it’s often hard to get a diagnosis quickly.
“Sometimes there is anger, blame or guilt involved. There is obviously confusion with the patient, but also with the caregivers because it’s hard to decipher what’s going on,” she explained. “I had to ask, ‘Is this because of her dementia or something else?’
“We missed all of the early signs because none of us knew anything about dementia,” she added. “I love my mother and care for her deeply. But we went into survival mode because there was so much practical stuff to deal with, and not just medically. We had to understand the terms of mom’s revocable trust to be able to sell her house and a host of other legal issues.”
Many days, Nicole felt like she was playing a game of whack-a-mole, addressing problems as they randomly came up. But, there was no end to the problems.
“I had to identify a primary task for the day, and determine what I needed to get done now versus later to move the process forward,” she explained. “I focused on what was practical to keep me centered because that was the most important thing for me to do at the time.”
Missing early signs of dementia
In hindsight, Nicole said she and her family missed several early signs that her mother’s mental condition was in decline. Today she refers to them as “that’s weird moments.”
“For example, my sister’s two boys used to love coming to grandma’s house for sleepovers. They’d bring all their toys and hang out in the family room with their blankets,” said Nicole. “A few years ago, when I was visiting along with my daughter, all of us when for a walk around the sunny L.A. neighborhood for about 20 minutes.
“When we came back, my mother opened the door and asked, ‘Why are all these blankets and pillows on the floor? Did someone stay here?’ Nicole explained. “After a decade of her grandsons spending the night, she had no idea what had happened.
“My sister, daughter and I sort of looked at each other and thought, ‘Okay, that’s weird,” she added. “We dismissed it as a senior moment, brushed it off and moved on.”
Preparing for dementia
In her book, “Diagnosis Dementia,” Nicole describes several types of difficult discussions families need to have well in advance of dealing with someone’s mental decline.
“First, be sure to have financial and medical powers of attorney drawn up. There are all kinds of issues related to those topics,” she explained. “For that reason, I encourage people to find an elder law or estate attorney to draft those documents because each state has different requirements to ensure they are legal.
“It is a bit more expensive to have an attorney draft the documents,” she admitted. “But, if you’re just checking boxes on LegalZoom, you may not know exactly what you’re signing.
“If you don’t do it right the first time, then the issues have to be addressed during probate,” she added. “It behooves you to do one-stop-shopping with an attorney for yourself, your parents and any children over the age of 18.”
Being able to get information, when needed, or to actually take over accounts, if the situation warrants the action, is much easier to do when the legal paperwork is already in place. There were a lot of caveats Nicole was not aware of before she ventured down this path. For example, the Social Security Administration does not recognize a financial power of attorney.
“Every bank, institution and government agency all have their own rules. If you start with a power of attorney for medical and financial issues, that gives you a framework upon which to build,” she explained. “It also creates opportunities for conversations you need to have early and often.”
The rules established by departments of motor vehicles will surely differ from state-to-state.
“For quite a while, we had been trying to get my mother to stop driving, but she refused,” said Nicole. “Once a neurologist diagnosed her with dementia, the doctor was legally required to notify the DMV, which revoked her license.
“But, that did not matter to my mother. Because she was still in possession of her license, she was convinced she could still drive,” Nicole added.
There are websites and books offering advice on how to approach the conversation in a way that is mutually comforting and allows patients to retain their dignity.
For example, one family had to make the very difficult decision to take away a man’s car keys. To him, that was his last vestige of freedom. Rather than crush his spirit, the family secretly had a different key made and put on his keychain. The man still retained his ‘freedom,’ but he could not have started the car even if he wanted to drive.
“The discussions are not easy to have, but they are essential,” she explained. “You definitely do not want to ambush a family member at Thanksgiving or Christmas because everyone is often stressed an on high alert anyway, and that is not a good time to do it.”
Be proactive
Because of Nicole’s experience with her mother’s dementia, she also turned her attention toward her father. Her parents had been divorced for years, but Nicole knew she would eventually need to address the same issues for him.
“It turns out my dad had absolutely nothing done, and no interest in doing or drafting anything,” she explained. “So, I had to fly to his state and meet with an elder law attorney there.
“It took me 18 months to convince my father to have the documents drafted,” she added. “We went to the bank and had me added as a co-owner of his accounts. Then we went to his financial adviser’s office and got my father to designate my stepmother and me as beneficiaries.”
The process of discovering everything that needs to be addressed in caring for elderly people has many long reaching tentacles. All financial accounts, and even certificates of deposit and savings bonds, have provisions to pay the proceeds to a beneficiary of the original account holder.
“There are ways to keep these assets out of probate, but you need to know what you’re doing,” said Nicole. “That’s why an eldercare attorney is critical.”
It is significantly better to handle the issues well before any incapacity becomes an issue. Otherwise, it’s a legal gray area as to whether someone in the early stages of dementia is “of sound mind,” Nicole noted.
When her stepmother was diagnosed with aphasia, or the inability to communicate effectively, Nicole proactively reached out to the woman’s brother.
“I explained that because I was working on my father’s affairs, and he was going to work on his sister’s, we opted to work together to get them done,” said Nicole. “My father was fine mentally, but she had a diagnosis of incapacity as well.
“There is a huge gray area in that aspect of eldercare, which is why I leave it up to the attorneys to figure out,” she added. “We got my stepmom’s affairs worked out, but there were a whole host of variables that presented themselves.”
Regularly review documents
It is essential that people review their documents every 10 years at a minimum, and more likely every five years to ensure they are still legally enforceable.
“In most cases, a power of attorney remains in effect forever. But, some banks and institutions may declare that a power of attorney is invalid after a certain number of years,” said Nicole. “Laws and situations can change which may open the door for people to contest things.”
For example, when a couple is happily married, they draw up a will designating all their assets be automatically transferred to the surviving spouse. They may even designate life insurance policies to be paid out to their spouse.
Fast forward 10 years. The marriage may have dissolved by divorce, but the documents were never updated. Then someone dies and, according to the legal documents, money and assets pass to their former spouse.
Nicole said it’s always a good idea to review wills, powers of attorney and paid-on-death accounts to ensure the instructions still reflect the intent of the person signing the documents.
It is a huge favor for children and other survivors to maintain an up-to-date list of all active accounts, recurring bills and current assets.
“I am still in the care-giving phase, but I continue to learn about new situations and things people can do in advance,” said Nicole. “My goal is to offer some kind of coaching service or advice in the future.
“Right now I talk to a lot of book clubs and faith-based communities to get as many people thinking about the ‘what ifs’ in advance of any situation coming up,” she explained. “I can even do online presentations to organizations to go over my material and answer questions.
“Although I am not a financial advisor, doctor, lawyer or social worker, I do know a lot from a daughter’s perspective,” said Nicole.
The ultimate ‘What if’ situation
One statistic that stunned Nicole when doing research was that 30 percent of caregivers die before the person for whom they are providing care.
“Caring for people with dementia or other around-the-clock needs is exhausting,” she explained. “You are taking them to all their appointments, managing their medications and daily affairs in addition to cooking, cleaning and navigating your own life. Very often, caregivers neglect their own physical and mental health.
“It’s just too hard to go to the dentist or a primary care doctor for your own needs because you lack the bandwidth to manage that in addition to other responsibilities,” she added.
Nicole has talked to several people in recent years who had been taking care of someone. Yet, other family members were unaware of how much care that person needed.
“One man told me that when his father died, he and his siblings had no idea how debilitated their mother had become because dad was covering up for her true condition,” said Nicole.
“Suddenly, dad was gone and the grieving family was thrust into a situation where they had to get around-the-clock care for their mother,” she added. “When people are over 70 and providing care for someone else, the caregivers actually die first more than 70 percent of the time — and it gets worse as age progresses.”
Nicole recalled a time five years ago when her father fell and required shoulder surgery.
“He and my stepmom were living their lives, and we were actively living ours, too, with work commitments and shuttling kids everywhere they needed to go,” she explained.
“A few days after my dad had shoulder surgery, I called to check in and he sounded as though he had aged 10 years. It terrified me,” said Nicole. “After that, I called my father every day or every other day. I realized how important that was.”
“It was through those calls that Nicole realized she needed to get his legal documents in order. After the fall, her father eventually understood the need to do so as well.
“So many parents do not want to be a bother to their children, so they will not bring up the fact they are struggling themselves,” said Nicole.
“The parents rightly understand their children lead busy lives with active careers and families who need them. They convince themselves the last thing their children need to deal with is mom or dad,” she explained. “So, they keep things to themselves in order to reduce stress on their children’s already busy lives.”
The eldercare paradox
Studies show there are two things people want most in their golden years. They are:
- Not to be a burden on their adult children; and
- To leave a little nest egg for their children and grandchildren.
“If you do not have those difficult conversations with your parents, and you do not prepare for contingencies, then your parents are going to be a complete mess,” said Nicole. “If you don’t prepare with them, then their nest egg could be depleted literally in a matter of months. It behooves you to start the conversation early, and have it often.”
Nicole recommends several websites to help adult children have those discussions with their parents. They include:
- Five Wishes (fivewishes.org) is a directive developed by Aging With Dignity. It is often described as a “living will with a heart and soul.”
- The Conversation Project (theconversationproject.org) was developed by the Institute for Healthcare Improvement to encourage people to talk about their wishes for care through the end of their lives. That way the wishes can be understood, honored and respected.
- Death Over Dinner (deathoverdinner.org) is a private initiative to help families turn difficult conversations into ones of deep engagement and empowerment. The website guides people through a process to plan an actual dinner around tough topics that need to be addressed.
“There are also local agencies that can help people through the process of having difficult conversations,” said Nicole. “Or you can just do what I did. I told my dad that I booked an appointment with an attorney so I could learn about the laws in his state.
“I explained he could come with me, if he wanted to, but I needed to be prepared in advance because I was not going to go through the situation I went through with mom when he arrived that the point of needing care,” she added. “I was a little more blunt, but I made it clear I was not going to do it again.”
Ultimately, those conversations need to begin at the kitchen table or living room, rather than in an emergency room or intensive care unit.
Self-care is vital
“Like we are told on airplanes, people providing care for others absolutely must ensure their oxygen masks are in place first, before they try to help someone else,” said Nicole.
“I raised five kids, but I made it my No. 1 rule that I had to take care of me first in order to take care of them,” she added. “Eating right and exercising gave me more energy to give to them.
“For other people, it might be taking a walk in nature, enjoying a cup of tea in solitude, reading a book for 30 minutes or finding a quiet place to meditate,” she explained.
Yet, Nicole understands that people caring for people who have dementia at home are on duty constantly and often cannot divert their attention for more than a few moments.
“I know it is hard to walk away because you’re worried about something happening. What if the person falls, starts choking or breaks something? I get it,” she explained.
“You still need to find time for yourself, even if it means lying on the floor while being cognizant of what is going on around you,” she suggested. “Put on some music you like and take deep breaths.”
Nicole noted that, in the vast majority of situations, it is the daughters who are doing the caregiving.
“That’s just the way it works in nature,” she explained. “Women are the nurturers and caregivers.”
She highly recommends women join an online organization called Daughterhood.org. It empowers individuals to navigate the practical and emotional complexity of caregiving. Nicole is a certified Circle leader.
“You had your childhood friends and your motherhood friends. Now you need your daughterhood friends,” she explained. “Daughterhood is a 100% free, online national network of support circles in which people participate via Zoom.
“You can vent, cry, share and talk. It’s an opportunity for caregivers to connect with other caregivers,” she added.
The online circles are centered around topics like:
- Caregiving 101
- Dementia 101
- Grief 101
- Speech therapy
- Palliative care
Participating is as simple as visiting daughterhood.org/circles, and looking at the calendar of upcoming events.
“There are usually three to four events scheduled every week. Pick one and register. You will be given a link to join the meeting on a specific day and time,” said Nicole. “It’s not restricted to just women. Sons and spouses are invited, too. Anyone who wants to talk about caregiving, needs advice or just wants someone to listen are invited to take part.”
Daughterhood also has a podcast hosted by Rosanne Corcoran, who interviews experts in the field, and asks questions for which caregivers want answers on topics ranging from the practical to the emotional strains of caregiving.
The sandwich generation
Nicole is passionate about helping members of what are known as the sandwich generation. They are women caught between caring for two generations. Shortly after they usher their children out of the house, the women are needed to care for their parents.
“I ran a podcast for five years called ‘Happy to Help.’ Once a week, I invited guest to talk about what they did and why they did it,” said Nicole. “It was a community of people who liked to help others.
“At the time, I was volunteering with a literacy organization, which caused me to read more, and be more aware of what was going on around the world,” she added. “When everything happened to my mom, I had to push that aside.
“I had already started taking writing classes because I thought I might write a book about volunteering. That has segued into a book totally focused on dementia and caring for people who have that,” Nicole explained.
Caregivers still need to pursue things that re-energize them and give their lives purpose or meaning beyond caring for people they love.
“Whether it is a hobby or side hustle, it is important for us to keep learning new things,” she said. “We are learning more about preventing dementia. Learning new things is just as important as exercise, socialization, diet, sleep and managing stress to preventing or slowing the onset of dementia.”
Advice for people over 50
Nicole recalled Oprah saying 50 is the new 30, and she appreciates that philosophy. For her, maintaining a focus on health is super-important.
“Pickleball is a craze everywhere. If you haven’t tried that, I encourage you to look into it,” said Nicole. “Pickleball is both active and social.
“You don’t have to look too hard to find something to be passionate about,” she added. “Just follow your interests. Be curious and inquisitive. Ask around. Find out what your neighbor is doing and try that. Join a book club, bridge club or even a walking club.
“You have got to make a little bit of effort because purpose just doesn’t fall into your lap,” said Nicole.
For more information
- Website = www.njsmithbooks.com
- Email = hello@njsmithbooks.com
- LinkedIn = www.linkedin.com/in/utnicolesmith
- Instagram = www.instagram.com/dementiabookreview
Nicole’s book, “Diagnosis Dementia: Your Guide for Eldercare Planning and Crisis Management,” is available on Amazon, Barnes & Noble, Books A Million and other bookstores.
If you order Nicole’s book from one of the links above, Forward From 50 may earn a small commission at no extra cost to you.
After closing his business and enduring several painful years of uncertainty regarding what to do with his life, Greg founded Forward From 50 to help men and women over 50 to live more purposeful lives by pursuing things they are passionate about. A Wisconsin native, Greg currently lives in Arizona.