A diagnosis of Alzheimer's or other forms of dementia can feel like a curse for the person who has the disease, and for their family and friends. It's as if everything you knew and loved about your life or the person you're caring for was in a box and that box was suddenly picked up, turned over, and chucked, leaving families scrambling not only for solutions but also for hope. After the initial shock comes the reality. Death isn't usually imminent, which is good, but what's to come can, for many people, seem almost worse. It's a disease that wreaks havoc on personality, relationships, the body, and, of course, memory. We are left asking, "Who am I (or who is Mom or Dad or my spouse) if I/they can no longer remember?"
Paula Spencer Scott, author of Surviving Alzheimer's, offers immense insight and practical advice as we navigate the Alzheimer's journey, and she shows that it is possible to make the very most of the time we have.
Surviving Alzheimer's is caregiver friendly. It is both hopeful and helpful. Every section, from behavioral changes and outbursts to undressing in public, refusing to eat, sleep concerns, lack of (or too much) involvement with other family members, how to communicate effectively with the medical community, and more, is divided into useful sections: a common scenario of a care situation, why it happens, try this, and how to cope. These sections create a pattern that allows the reader to quickly find the information and suggestions needed. This is a book that won't sit on any shelf for long. It will quickly become highlighted, dog-eared, and found on bedside tables and kitchen counters. It's far too useful to stay closed for long.
Having spent years as contributing editor at Caring.com and as a Met Life Foundation Journalists in Aging fellow, Paula knows the facts but also understands the emotions. She's held the hand of her own loved ones (including father, grandfather, and mother-in-law) and has faced many of the feelings and stages that come with this disease. Read more about her new book and how it plays the role of a caregiving manual for many family caregivers.
Paula, after facing Alzheimer's/dementia within your own family, and researching and writing about this subject for many years, what do you consider some of the biggest challenges people with dementia face? And, second, what are the biggest challenges their caregivers face?
Paula Spencer Scott: I think the biggest challenge on both sides is stress. For the person with dementia, early on it's the stress of confusion and coping with losses (like driving or other abilities), and later it can be the stress of not feeling secure and understood. For the caregiver, it's both the stress of being eyewitness to these changes and struggling to find the right ways to adapt to them -- while leading the rest of your life.
You write in Surviving Alzheimer's, "The stress of Alzheimer's care isn't just day to day. It snakes across state lines and family trees. Stigma is huge. . . ." What stigmas are attached to Alzheimer's, and how can we change the dialogue so that families can get receive the support and understanding they so need and deserve?
PSS: Too often Alzheimer's is still thought of as cancer was a generation or two ago -- an unspeakably scary thing you grappled with in private. We don't want friends to know. We don't want employers to know. Many doctors even avoid the word. Siblings don't all want to know. But when you don't name a problem, you cut yourself off from getting help, whether from community resources or from friend and family support.
Denial is a huge problem when it comes to dementia. Why are so many people afraid to "own up," and what problems does it cause not to come clean and talk about what you and/or your family is facing?
PSS: Denial is close kin to stigma. When the idea of a disorder is so unthinkably dreadful to you, it's the last thing you want to believe that a loved one has. So I see many family members who will latch on to any other explanation: "Mom's just getting old." "Dad's just ornery." But again, this cuts you off from understanding the "whys" behind their behaviors and from reaching out to sources of help that can show you how to continue to love and relate to the person in spite of the neurologic disorder.
When you own it, you're no longer intimidated. Sad, sure. But able to keep moving forward.
Alzheimer's/memory care homes tend to be more costly than general care homes -- so expensive that many families simply can't afford them. What alternatives can a spouse or family turn to if full care isn't an option?
PSS: For many families, bringing outside help into the home is a way to keep from burning out. For my dad, at first we hired an elder companion who played cards with him and drove him to bowling. (He thought she was there to help with housework.) Sadly, most people have to patch together various kinds of help: day programs, in-home care, transportation, volunteers, rotating siblings. But I would also say it's worth not ruling out any option without research. See what's around, and also assess all sources of financial support, from insurance and VA benefits to Medicare/Medicaid.
Caregiver burnout isn't just a catch phrase, and those who are caring for a spouse, a family member, or even a friend can find themselves physically and emotionally bankrupt. When is caregiver burnout dangerous -- and in what ways?
PSS: Learn the warning signs of depression. Pay attention to yourself. If you get sick, how does that help the person (or often people) in your care?
The trick is to manage stress -- whether it's the oppressive kind or the drip-drip-drip kind that sneaks up on you. That's where I'd argue that having tools for understanding and coping with Alzheimer's come in. Knowledge really is power. And knowledge and help together are great burnout fighters.
What do we not know about Alzheimer's?
PSS: Unfortunately, the number-one thing we don't know (aside from how to cure it) is exactly what causes it. So treatment has been tricky. You can't just "take a pill" or drink coconut oil to fix it or even to slow it down. It's not so simplistic.
The good news is we know a lot today about how best to respond to or even prevent many of the behaviors dementia can bring. We know what people who have it need to feel comfortable, secure, supported, and productive. We know more about looking at the whole person -- how medications for various conditions interact, how to create a safe house, how mental and emotional support help.
That's why Surviving Alzheimer's includes interviews with my "Wizards of Alz" team -- a group of top-notch doctors, therapists, and other caregiving experts who share overviews on what we know and what can be done in specific areas like communication, activities, medical care, and more.
It sounds grim, but it's best to be prepared -- how does Alzheimer's change over the course of the disease, what happens at "the end," and, most important, how can caregivers (spouses, family members, even their community) prepare themselves?
PSS: Many caregivers do talk about the final stage of Alzheimer's as being a very different beast. Because it's a progressive disease, it can eventually rob the ability to speak, to walk, to eat easily, even to seem to recognize close family.
The first thing is to realize that it's ever changing, and in a downhill direction. It's always helpful to learn about the stages -- even though they unfold at different paces and in very individual ways, peeking ahead prepares you. Play "what if?" and think about how you might answer it. What if my husband didn't know me? What if Mom were incontinent? That braces you a bit and helps you consider options.
Also remember that no matter how diminished the person, his or her core essence remains. They may not talk, but they hear you. They may think you're someone else, but they're comforted by your presence. They can't do, but they are.
You have four children as well as stepchildren. How has having elders with dementia affected them, and what advice do they have to give to other kids, teens, and young adults?
PSS: All six kids have had to witness beloved grandparents change. Our impulse is often to shield kids from brain diseases, but this deprives both sides of companionship. Kids are great instructors for all of us when it comes to Alzheimer's. They excel at living in the moment.
Kids have an uncanny ability to be themselves no matter what. My son would play guitar at the facility where my dad was living at the end of his life. When he was younger he misheard me and thought Grandpa had "old timer's disease." My niece would polka with Dad, and he loved it.
It's helpful to let kids know, in an age-appropriate way, what Alzheimer's is: a glitch in the brain that affects memory and other thinking skills. You can't "catch it" from someone. Grandpa and Grandma still love you even when they mix up your name or ask you 20 times what grade you're in. Kids get it.
Another sticky area of Alzheimer's/dementia and elder care in general are the various disagreements that pop up among family members. Sometimes these disagreements get downright ugly and involve everything from decisions about care to financial concerns. Many families never heal from these issues. You offer many examples in your book. Is there anything family members can do -- going into elder care -- that can somehow assure that relations and communication won't completely break down?
PSS: As Duke social worker Lisa Gwyther says in my book, "If you've seen one family facing Alzheimer's -- well, you've seen one family facing Alzheimer's." Everyone's different and brings different backstories to this care.
If there's one thing most families I've talked to seem to agree on, it's transparency: Be clear about where money goes, and talk openly and often about options and decisions. Keep people in the loop. Divide the work if you can, so everyone has a stake. And above all, put the person with Alzheimer's first when figuring out what to do. As best you can, set aside your own feelings, needs, grudges, and priorities.
In a real tussle, some families swear by the involvement of an elder mediator or other neutral third party.
The title, Surviving Alzheimer's, implies that there is hope. This book offers many proven strategies for facing the frustrations and, oftentimes, heartbreak that come with such a ravaging disease. After a reader/caregiver closes your book, what do you hope they'll remember and be able to refer back to again and again?
PSS: The broad takeaway, I hope, is a lingering sense of relief and strength that comes from having a better understanding of the disease and how to cope with it, practically and emotionally -- hence the life-preserver image on the cover!
More specifically, the format is all about being able to refer back as new things crop up. I wrote the book because I felt that in the many fine words out there on Alzheimer's, nothing clearly and quickly explained the "whys" behind the specific changes and behaviors you see, or offered practical ideas on what to try in response. This "why this, try this" approach can be like a lightbulb going off. That translates to less stress.
I deliberately chose the word "surviving" to mean that a caregiver can get through each day in a more positive way -- and so, in turn, can the person with Alzheimer's. Little about Alzheimer's care is easy. But it shouldn't drown you. You deserve better. This book summarizes all the best thinking on how to "help the helpers."