Grace Frisone, a retired financial services executive, is the chair of the board of BrightFocus Foundation, which provides public information and funds basic research aimed at ending Alzheimer’s and other diseases. The following is adapted from an interview.
My mother was a born-and-bred, die-hard New Yorker, but I got her to move to New Orleans to live close to my husband and me. Soon after that, she was diagnosed with mild cognitive impairment. Then Hurricane Katrina hit, and brought a lot of stress into our lives, a lot of moving around, and my mother ultimately had to move to assisted living. She passed away only in April 2012—we watched her decline for 7 and a half years.
Mom’s assisted living facility was within walking distance of my house, and since my brother and sister didn’t live nearby, my husband and I became the primary caregivers. I saw her just about every day, and she spent every weekend with us as well.
I was head of investment management and trust for a regional bank in New Orleans. It was a demanding job that didn’t give me much flexibility. Katrina was a wake-up call to examine what was important in life. I didn’t know how long my mother was going to last. You regret the things you don’t do in life, and I was afraid that I wouldn’t have enough time with her and then she’d be gone…
I decided I wanted more flexibility and more time to spend with her. A year after the storm, I rearranged my priorities and quit. My mother became a focal point of my life.
My husband and I had a good relationship. Dealing with my mother brought us even closer together. When my mother started sliding and things seemed really dire, he ’d make me laugh. You have to have a sense of humor in this.
Mom was a wanderer. She was quick, and she was smart. She had a long phase where she wanted to go back home. Like one day, she was sauntering in the neighborhood and a neighbor from his porch said, good morning. He asked where she was going. She said, to Brooklyn. Since she was in New Orleans, he knew she wasn’t going to make it pushing her walker all the way to Brooklyn. He made a call and she got back home, but it was terrifying when she’d take off. She enjoyed sitting on our patio or on the front porch watching the goings-on in the neighborhood. But if I took my eyes off of her, I’d end up running to the corner to see which way she’d gone. Luckily, she didn’t get on any buses or take any cabs!
The seven years with my mother were a gift. We could actually have fun together. Eventually, she had trouble forming words. But the person is not gone; the person is still there. She was just trapped inside her body. So we communicated with hand signs and body language. My mother’s eyes were very expressive. She would give me messages with her eyes and hand movements.
I came to learn that I needed to stay in the moment with my mother and not think about how she was before or how it was going to be later. If the experience with my mother taught me anything, it was to be present and to accept her the way she was. I wish I had learned that earlier.
The finances surrounding Alzheimer’s are terrifying. We were very lucky in that my mother had managed to scrimp and save. We didn’t come from wealth. But we were able to put her in a very nice place, partly because we live in the south where you get more for your money than in New York.
This disease will bankrupt individuals, and it will bankrupt the nation. Even keeping a loved one at home, caregivers need help and a break. They can’t do it all on their own. There are physical requirements, financial requirements. This disease comes into the family and alters all relationships—with parents, with siblings, with spouses. It basically alters your whole life.
We need the government to support research. Otherwise we’re not going to find a cure. In 2012 they gave $500 million to Alzheimer’s research. That sounds like a lot until you realize that $4 billion was given for cardiovascular disease and almost $6 billion for cancer. We need to get the government to support caregivers who are dealing with family members with Alzheimer’s as well. This disease is incredibly traumatic and financially devastating.
Alzheimer’s disease and dementia affect about 50% of people over age 85. I don’t know about you, but I don’t want to gamble on being the one out of two who doesn’t get it. Those aren’t good odds. We need to find a cure.
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Lisa Spikell and and Kelli Magnarelli
Jean and Joe Brigati were high school sweethearts, married for 52 years. They had four children and ten grandchildren. Joe was an attorney. Jean was diagnosed with Alzheimer’s disease at 59 and lived to be 70. Their children all live within five miles of one another. This article is adapted from an interview with their two daughters, Kelli Magnarelli and Lisa Spikel.
KELLI: It wasn’t on purpose that we lived so close, but with what we were eventually faced with, it was a godsend. Because when one of us was exhausted someone else could always come over.
LISA: When Mom needed more help, our regular caregiver told the new one, “You have never been to a home where there is so much love.” And I felt that that was the biggest compliment that someone could pay our parents.
KELLI: Mom was all about being a mom and a friend. Growing up we never wanted to go to the grocery store with her because she spoke to everybody she befriended along the way. She was so graceful and elegant, vibrant, and very kind and giving. Then when she was 58 she started to struggle, and she knew something was wrong. We kept encouraging her that it was just regular forgetfulness, and then it transcended into something totally different.
LISA: It was not even within the realm of possibility that my mother had Alzheimer’s. It didn’t enter our minds, because she was so young.
LISA: I knew that she would lose her memory, and I could live with that; it happens to all of us. But I didn’t know she was going to become violent and agitated and not be able to be in social situations that had been comfortable to her for her whole life. She couldn’t be around people. Her world became so small.
KELLI: Dad couldn’t manage her anymore, and they both became pretty isolated. He worked tirelessly at maintaining her dignity. And while we couldn’t do anything about her at a certain point, we wanted to keep him alive. We didn’t want to lose them both. We always had a life in mind for him after this, and that’s why Lisa joined households with them. It was to preserve him, preserve his finances. So he could have a life.
LISA: We realized my father had shielded us from how much Mom had deteriorated and that it was taking a toll on him; he still worked full-time as a lawyer. So my husband and I asked if he’d consider combining households, accept our help in taking care of Mom.
We sold our home, and my parents sold their home, and we bought a house together in my parents’ neighborhood so that it would be familiar to her. But we actually were doing it for my father, never realizing how long my mother could stay with us. And then Dad was diagnosed with lung cancer.
KELLI: And the game totally changed.
LISA: Fortunately Kelli’s a nurse and was able to care for Dad, because Mom at that point was completely unaware of what was going on with anyone except herself.
Dad was supposed to be fine. He gave up everything he knew to move in with his daughter and son-in-law. It did give him a sense of purpose, but I’ll never forget when we were sitting at the breakfast table and he said, “There is nothing about my life that is normal.” It was so gut-wrenching, because this was the time in their life where they were supposed to be enjoying the fruits of their labor, and when we moved into together he was 68 years old.
Thirteen months after we moved into the house, Dad died of a heart attack. When he left the house that morning, we never dreamed that he wasn’t going to come back. It was unbelievable.
But in retrospect he was spared, because he didn’t have to see our mom at the end of her life.
KELLI: And she had lost her mind to the point where she didn’t know he had died. So neither one of them went through the loss of the other, which was a gift in the end…
KELLI: Dad knew it was going to cost a lot of money to take care of her the way that he wanted to, and he worked longer maybe than he should. He was very realistic that this could go on for a very long time and that he was not going to be able to take care of her always.
LISA: And there is no way to plan for that, to predict what level of care someone will need or when that’s going to come. I think we were really surprised at how quickly Mom had to be placed [in an assisted living facility] after Dad died.
KELLI: The only blessing with Dad’s death was that we were left with enough money to care for Mom for many, many years if we had to.
LISA: She was 68 years old, and it could have been 15 years that she needed 24-hour-care instead of three.
KELLI: They wouldn’t accept her into a facility without 24-hour-care. Her behavior was a real issue.
LISA: Eventually we placed her in a facility that was about $10,000 a month, and they only took her with the stipulation that she would come in with 24-hour-care because they were concerned about her interacting with the other residents. So the annual cost to keep our mother in a safe, well-cared-for environment was $275,000 a year, which allowed us to sleep at night.
KELLI: Safety was a huge issue. But in the end the disease sucked every bit of life out of her to the point where this woman who had lit up a room turned into an empty shell lying in a bed with no life in her eyes. As a nurse with 32 years’ experience, I have never seen anything like it.
I had to support my family and her and get her to the other side peacefully. It was extremely challenging. My heart breaks for people who don’t have an advocate or someone who can jump in and negotiate the system…
I would say: expect the worst, ask doctors a lot of questions, and, one of the most valuable things I learned, have a psychiatrist involved. I was never told by any neurologist that my mother should be seen by a psychiatrist to manage her drugs. She was often over-medicated, and it was hard to tease out what was drugs and what was disease. Psychiatrists know those drugs, how they interact and how they affect Alzheimer’s patients.
Also, most people consider Alzheimer’s to be an end-of-life issue. But our mother was 58. This is a disease that is going to affect more and more people, and there is nothing to stave it off.We have to focus on how we can help the individuals who have the disease, the families caring for them, and the community that is affected by it.
My name is Taylor Spikell, and I’m 11. I live in Chevy Chase, MD. My grandmother had Alzheimer’s disease. She lived with my parents, my brother, and me for three years.
My grandmother had always loved being around friends and family. My best memories would probably be when I used to go over there and spend time with her and my grandfather. Especially around Christmastime or before her birthday. That was special.
My grandparents and parents combined households when I was eight years old. When we were living with my grandmother, things really changed. Sometimes, if I wanted to spend time with my mom, I couldn’t because she would be preoccupied with my grandmother. Or if I wanted to have friends over I wouldn’t be allowed to because it would be too much to deal with.
During those years, there were some ups and downs but the hardest thing was seeing her sick and seeing her leave her life and become a different person. She changed, and it was really hard to deal with. But we worked through it.
I had to remember that even though she had Alzheimer’s, she was still my mom mom. And I had to treat her the same way as I’d always treated her. Even though my grandmother was sick and she changed, I wanted…I needed…to love her the same way because she’s in my heart forever.
Those times that we spent together were amazing but they kind of drifted off in the end. It was heart wrenching for me. But I’ll still remember them all, always.
The last couple of weeks of her life, I decided to sleep in her room because I knew that the end was coming. I wanted to spend the most time I could with her and share my love with her.
Alzheimer’s can destroy your memories and make you forget the things you should remember--the best memories. My grandmother will always be in my best memories.
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Bob and Julia Sessions
Bob and Julia Sessions live in Gaithersburg, Maryland, in a retirement community called Asbury Methodist Village. Originally from Arkansas, they have been married 52 years and have four daughters. It’s a family that values education highly—Bob has a doctorate, Julia and all four girls have graduate degrees. Julia taught emotionally disturbed children for 20 years; Bob was the pastor of a church, a professor, and eventually president of a small college. They have eleven grandchildren and two great-grandchildren. The following is adapted from an interview in which Bob and Julia were asked to share their experiences with Alzheimer’s disease.
JULIA: Bob’s mother had Alzheimer’s. We went through it with her from the beginning until her death, so we knew some of the signs, and we knew that Bob was having memory problems. He was diagnosed with Alzheimer’s in 2004 at Georgetown University.
BOB: We determined that we would do whatever the doctors said. They sent us to some quality clinics, where we’ve been under excellent medical care. I’ve lived sanely, actively, writing and publishing. I’m still “with it.” I have to give a lot of credit to Julia, because she has made life very meaningful for me and kept me going when I might have given up. With love at home and four daughters and then some grandkids coming along, life has been rich and good.
JULIA: And a lot has changed. I realized that I needed to participate more in what he was doing. When he had to give up driving, it placed a lot more responsibilities on me, and when he began to struggle with the finances, I had to become more knowledgeable about that and our taxes. Gradually more and more responsibilities fell on my shoulders.
I think an important advantage in our having been married for 52 years is that a lot of times I can figure out what he’s trying to remember because we have experienced it together. And I can fill in some of those details and bridge some of those gaps that he has in his memory.
BOB: That’s been the highlight of my life: being married to Julia.
JULIA: I want to say the best thing that Bob did for me was to say he wanted this to be an open process. As soon as he got the diagnosis, we slowly began…not making a big issue of it but telling our friends, telling our Sunday school class, telling the groups that we were in about it, and there was a lot of strong reaction at first. But over time, I think it’s been an extreme positive, because instead of people whispering “Is there something wrong? He didn’t quite seem right today,” they know what’s wrong.
Sometimes his brilliance comes out and other times he doesn’t know where the milk is in the refrigerator.
BOB: In other words, sometimes I’m just like her!
JULIA: The bad days? There are not a lot of those, but…confusion. Not remembering. Being angry that other people are taking over. Bob was always in control—as president of a college, as dean of a graduate school—and to find that you’re not in control has got to be terribly hard. I understand that when this anger comes, it’s not anger toward me; it’s anger at being where he is.
BOB: I decided that whatever time I had, I would make the most of it and, heavens, it doesn’t take a lot to make a meaningful life. If you give yourself to good things, good things are going to come to you, and I’ve had friends, friends, friends. I have asked, what can I do today that I really enjoy and that I do well?
JULIA: We have participated in clinical research, because, first of all, it was very painful to watch Bob’s mother decline. And then, his aunt had it and now he has it. While we have never been told there’s a genetic component, I think it’s obvious that there is something there. We have four daughters; we have grandchildren. As they age, they may have to face it.
Anything that we can do to further the research, we do. I think the clinical research that Bob has participated in has slowed the decline for him, but that’s not the only reason we’ve done it. We also are aware that it could help not just our children but the millions of people that are facing this in the future. Because there are so many. As the Baby Boomers hit the age in which Alzheimer’s begins to show up, it’s going to affect all of us.
Now is the time that it’s critically important for us to fund research as fully as possible.
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My mother, Mina, had not been a stranger to adversity. From living in a country where she neither spoke the language nor understood the culture, to losing her husband early on in life, she had known hardship and struggle. Eventually my mother—a loving, courageous, opinionated, and strong woman—began noticing that she was becoming more forgetful. She was later diagnosed with dementia then Alzheimer’s. Neither I nor my siblings could have imagined the impact it would have on our family.
We have always been a very close family, dedicated to one another. Both of my parents emigrated from Colombia, South America, and my siblings and I were raised with the Latino culture very much instilled in us. In 1976 when my father died, my mother was left to raise three teenagers, forging an even stronger family bond. My mother had a ferocious love of her children.
My brother Ed, the youngest of the three, was unmarried and took on the responsibility of caring for my mother in her home. In the Latino culture it is frowned upon to put your parent in a long-term care facility. So my brother, who did not have his own family, took on the responsibility of being the primary caregiver for our mother.
Being primary caregiver took a greater toll on him and his relationship with my sister and me than we could have ever anticipated. Taking care of a sick parent is lonely and stressful. With that responsibility comes many difficult decisions, some of which caused a rift in the relationship between him and my sister and me. My sister and I remain on good terms, but my relationship with my brother has become strained. I live in another state and depend on him and on my sister to make the best decisions possible for my mother’s care.
It’s hard to see someone you know and love gradually slip away and disappear. In hindsight, I can recommend that you have the “mortality conversation” early, however difficult it may be. No one wants to talk about palliative care and the decisions that have to be made regarding end of life care, but the discourse on “what happens if” is very necessary. I implore others facing a similar situation to raise the questions of final wishes, legal issues, and the type of care facilities available in your locale and their policies. It is essential to find out what the wishes of your loved one are and come to an agreement about what is going to be done, especially at a time where your loved one can be included in the discussion.
I can’t stress enough how critical it is to learn more about the disease and what your family needs in the future. I wish I had known how the disease would affect my family and what conversations we could have been had in advance to prevent the discord I experienced with my brother.
My advice for others whose loved ones have been diagnosed with Alzheimer’s is to live in the moment, accepting that your loved one can only be in the present and possibly even unaware of who you are and where they are. You may feel as if you have lost that person, but you have not. When I feel that the mother I know and love dearly is present, we talk, laugh and tell stories, with me entering into whatever story she is in at the moment. She needs my presence, not my past. Through it all, I have learned much and have even come to terms with my mother’s condition. Simply being present in the moment with my mother is not just a coping mechanism, but a way for me to enjoy my time with my mother and for her to enjoy her time with me. Being present to whatever story my mother is telling allows me to experience some joy in what can be a very painful situation.
I urge others in similar situations to take care of themselves and to express their emotions and feelings and seek support. Acknowledge the pain, sadness, and grief. This allows you to have more peace and joy when you are with your loved one. It helps you to engage with that person in the moment.
This is the moment and now is the time. Regardless of how difficult and painful it may be, ask the necessary questions and start having the vital conversations. And through it all, be sure to live in the moment; it’s all any of us really have.
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My name is Joseph Menefee and I’m the President and CEO of Global Technology Solutions and a software engineer. My wife and I live in Martinsburg, West Virginia. She served as Reminiscence Coordinator at the Sunrise Senior Living, so we’ve seen close up how Alzheimer’s disease affects many families.
When I was very young, my grandmother moved in with us. She had Alzheimer’s disease and had been moved from the houses of one family member to the next, and each of her nine children took turns taking care of her. She lived with us for about five years, and over time the disease really started taking hold of her. She started forgetting the family members’ names, including my mother. Over time she didn’t recognize anybody. This just broke my mother’s heart. I have a strong memory of her sitting on a stool in the corner of our kitchen crying because my grandmother had no idea who she was. It became harder and harder for the family to take care of her. At first she was just forgetting things, but over time she became violent, and that was shocking, especially to me, since I was only in the first grade.
The thing about Alzheimer’s it that it takes the person away from you literally. Look into the eyes of somebody with Alzheimer’s, and you just don’t see the person’s soul…like it’s gone. And that’s the one thing I really remember deep down inside. I used to look at my grandmother, and I didn’t really see her there. It was as if her personality had vanished. Her body was there but her mind…and her soul…were missing. Long before death, Alzheimer’s disease takes away the person you love.
Alzheimer’s research is very critical in this day and age. I believe this is a disease that every family is likely to be affected by. Research is the viable tool for future healing and and for solving the Alzheimer’s problem. I would encourage everybody to donate to Alzheimer’s disease research.
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Bea and Alice
Alice McDonald, of Ft. Lauderdale, Florida, is the mother of two young children and a part-time employee of the Walt Disney Company. Her sister, Beatriz González, is a partner at Capital Results, a public affairs firm in Richmond, Virginia. Their father, Raymond, was diagnosed with Alzheimer’s disease in 2009, when he was 80. Wilda, his wife, died October 2012.
ALICE: Our father was a brilliant, involved, and energetic man. He was a partner at Price Waterhouse for many, many years. He was very active in politics and served as Secretary of Treasury in Puerto Rico, something we’re very proud of. He helped so many family and friends, wrote and taught Bible studies, and helped organize churches. He was a very giving, thoughtful, and generous man. He was also an avid golfer.
BEA: I think of Dad as the life of the party. He loved a good glass of red wine and was the guy you wanted to sit next to at a party. He also loved to talk to you about his round of golf that day, or the golf trip he took with friends. Some of the best conversations I’ve ever had have been on a golf course with my dad. We always found time to talk about school, career, boys, and faith in God. I mean that’s who he was. He still loves to hit golf balls in the back yard with my nephews, Alice’s sons Kyle and Shane.
I was going through a divorce when it became clear that something was not right with my father. His memory was very sharp about his childhood and Yankee baseball statistics, but he was far more forgetful of things that happened just minutes prior. He couldn’t remember that I was even married so I became very concerned. Since I didn’t live in Florida, Alice and her sons were the ones who really noticed something was dramatically different. The more time they spent with him, they realized everything was just "off."
Nothing had prepared us for his diagnosis. My mother was in denial for a long time. My Mom had a difficult time accepting the situation. Alice is really the superstar here; she took classes and read about the issue and became informed. She is the one who has educated me on everything relating to this diagnosis and the challenges that lie ahead.
ALICE: At the time our father was diagnosed, I lived a few hours away in Orlando and started commuting down to help my parents, taking Dad to doctors’ appointments and seeing what had to be done. Alzheimer’s has had a huge impact on my immediate and extended families since Dad was diagnosed. We finally made the decision to relocate our entire family to South Florida to live with my father and help care for him.
With this disease, the family is important, but there can also be many frustrations. We have family members with opinions now on how he should be cared for or on his affairs, when they weren’t involved with him for years and years. So some family members are more helpful, while others just cause more heartache: "You’re not doing this right…you shouldn’t be doing this…do this." Not really knowing Dad’s needs or honoring his wishes.
BEA: I think the really disappointing thing is that while they all have an opinion to give, when there’s a real need, like one of us can’t take Dad to a particular appointment, you call up for help and they disappear.
We are in a much better financial position than most families. The financial toll for Alice and her family to relocate and for her husband Scott to get a new job was obviously very high, but Dad having been at Price Waterhouse had some distinct benefits: great care, great insurance. And to have a caregiver like Alice—we’re so fortunate she’s able to do that. I can’t imagine what it’s like for most families, who don’t have that kind of support. The memory center alone is several thousand dollars a month; it’s unimaginable to me how some families are making ends meet across the country.
I think funding for research is critical. The phases of Alzheimer’s are really an excruciatingly long, slow process, and it doesn’t get the national recognition that others like breast cancer receive in the media. Research is key, because we have to know how to prevent or delay the effects. Technology is constantly changing, and every day we can find new methods to aid these patients. I believe that we can find a cure, and raising funds for research and awareness is the best way to do so.
ALICE: Alzheimer’s impacts so many people—the patient, the family members, caregivers—and with the elderly population increasing, it’s going to become more prevalent and very common. The director at my son’s daycare told me her grandmother and aunt suffer from Alzheimer’s. At my former employer, people came up and told me stories about their mothers, their grandfathers. People don’t talk about it much until you’re going through it, but I’ve found out that it’s very prevalent.
So it’s terribly important, doing research that can stop the progression of the disease.
BEA: Now is the moment to focus on brain health, to invest in research, to help families affected by Alzheimer’s.
ALICE: And to learn more.
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Art Taylor is the president and CEO of the BBB Wise Giving Alliance in Arlington, Virginia. The following is adapted from an interview he gave to BrightFocus Foundation about the illness of his mother, Matilda Taylor.
I got a call from Mom in Philadelphia, and she said, “I’m moving.” That was really strange because she owned her home and had lived there comfortably for 40 years. Suddenly she wanted to move? She was 82 years old. She said, “I think I’m going to move in with my sister Vivian,” and she did.
A few weeks after that she told me she wanted to move again, and at that point my brother and I realized we needed to find out what was going on. We got her into an apartment that was literally a block away from her old house.
Then I couldn’t reach her for a few days. I called everyone I could to try to locate her, and no one knew where she was. Finally late that evening she turned up at my Aunt Amy’s in Philly, and she looked like she had lost 10 or 15 pounds and had a really distant look about her.
I said, “I think you need to come live with us,” and I drove her to our home in Maryland.
So at first our story was one of a short-term situation where we noticed that something wasn’t right with Mom. She was distant. Later on, when we had moved her into our home, paranoia set in, and she actually thought those of us who were caring for her and who loved her most were her worst enemies. That was difficult for us, challenging, frustrating, and very emotionally draining, and we weren’t able to get the kind of answers that I thought we should be able to get from the health care system.
We took her to the hospital several times to get some type of diagnosis of the problem, but we were never able to. They did all sorts of scans of her brain and other things, but they couldn’t find anything physically wrong. It was very frustrating. Because in my mother’s case, we knew how strong she was of character, of mind, how she made great decisions throughout her life, and you’re sitting there watching this person in almost disbelief that she could be in a condition where she’s hallucinating.
Things got very challenging. Many problems arose, like needing to understand how the Medicaid and Medicare programs work. That was somewhat of a nightmare, to learn that when she moved we had to get her reassigned to Maryland’s social security program, which took a long time. We also had to align her with a whole group of physicians down here. We had to get care for her during the day while I was working, because when I tried to leave her alone in the house a few times, it was harrowing for her. She was afraid that something was going to happen to her, that one of the visions that she was seeing was actually out to get her.
These were difficult days. You deal with it because you love the person and no matter what it takes, you’re going to make sure that she’s okay. But I had a son in high school at that time who needed my attention as well. That was a very, very challenging time for me personally.
My mother died while visiting at my brother’s house. She was having a bad night and decided that at all costs she had to get out of the house. She actually climbed out of the second floor window and fell to her death. My brother and I and my sister-in-law all have regrets, but then you also know that this disease was going to take her one way or another, and maybe God was giving us a blessing of sorts, to make it quick and for her not to suffer so long with this like many people do.
Nevertheless, the impact of this disease on our family was enormous. It does affect your quality of life, even after your loved one is gone.
There are going to be a lot more Tilly Taylors out there and a lot more younger family members trying to care for these elderly people who won’t have anyplace else to turn. And I think it’s going to be an epidemic for our country.
Now is the moment for this country and its citizens to really understand what’s going on with the elderly, especially the elderly who are afflicted with debilitating mental diseases. This country is very talented, with people who are able to do any number of things that we set our minds to. The real challenge for us is to realize that we’re all headed for old age, and that if we work together there may be an opportunity to head off the epidemic.
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Last Review: 04/15/14