Resources

As excerpted from Where the Light Gets In

What would Mom say if she were well and could understand this book?

She was hesitant at first about revealing her dementia. But eventually she told many people and drew comfort from their support. I think if she’d been able, she would have followed Michael J. Fox’s example by going public, making a mission of shattering taboos, and raising money for research.

She might have objected that this memoir didn’t adequately portray the horror of her condition. It was more shit in a bucket than where the light gets in, she might have said. But almost above all, she would’ve demanded that we acknowledge the many mistakes we made, and insisted that I provide you with access to key resources we wish we had discovered years ago. So, in a way, all of what follows is from my mother to you.

How Big Is the Threat of Dementia?
The projections are alarming. By 2025, the number of people age sixty-five and older with Alzheimer’s disease will reach more than seven million in the US. Females in their sixties are about twice as likely to develop AD sometime in their lives as they are to get breast cancer.  These patients of the future will face daunting expenses. Already today, end-of-life health-care costs for people with dementia are substantially larger than those for cancer or heart disease.  Yet, in spite of these numbers, funding support for essential research lags.

For more facts and figures, see: http://www.alz.org/news_and_events_women_in_their_60s.asp; http://annals.org/article.aspx?articleid=2466364; http://report.nih.gov/PFSummaryTable.aspx.

What Can You Do to Help?
Get involved. Mom would have asked you to donate money (generously) to an established nonprofit organization like the three listed below. Become an advocate on behalf of the millions of people like my mother who cannot speak out for themselves. Spread information about the stats above (on social media, letters to editors and Washington representatives, one-to-one conversations…) that will be news to many.  Donate online at the Alzheimer’s Association (http://www.alz.org/join_the_cause_donate.asp); the Lewy Body Association (http://www.lbda.org/donate); or the Association for Frontotemporal Dementia  (http://www.theaftd.org/get-involved/ways-to-give).

How Do You Know If You or Someone You Love Has Dementia?
Everyone in my family and many friends have asked this question since Mom’s diagnosis. We’ve found this link, about normal aging versus Alzheimer’s, to be reassuring: www.alz.org/alzheimers_disease_10_signs_of_alzheimers.asp.

But if your answers don’t dispel your concerns, your next step might be to check in with a physician.

Where Can You Get a Reliable Diagnosis?
Mom’s internist was the first to give her a few simple tests. Struggling with them didn’t mean she had dementia. It took many more hours of testing and examinations to zero in on a likely reason for her symptoms and exclude other possible causes. Start here to get the basics and find a physician near you: www.alz.org/alzheimers_disease_diagnosis.asp.

This overview summarizes major types of dementia, including primary progressive aphasia (under the general category of frontotemporal dementia): www.alz.org/professionals_and_researchers_13507.asp.

Specifically for information about PPA, go to the place where it was named in the 1980s, at Northwestern University: http://brain.northwestern.edu/dementia/ppa/.

Look here to explore symptoms and causes (including the finding that in some cases, PPA is caused by Alzheimer’s disease): http://brain.northwestern.edu/dementia/ppa/signs.html.

This site points out that some dementias are reversible: https://caregiver.org/diagnosing-dementia.

And this 2013 medical journal article is about how some conditions mimic Alzheimer’s. It’s not a quick read, so maybe pass it on to your physician: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3725959.

How Could Stigma Hurt You?
The secrecy we sought was a feverish side effect of Mom’s dementia in the early months after her diagnosis. We’ve learned it’s not an uncommon obsession, particularly among comparatively young people like her. And it’s understandable. If she’d been worn down by cancer or heart disease, it might have been easier to expect support from an employer and time off for a treatment likely to succeed. Once cancer itself was unmentionable. Until the 1970s, doctors often hid findings of malignancy from patients because tumors were shrouded in stigma.

More than half a century later, dementia attacked my mother’s voice, and shame silenced her from saying the disease’s name to friends and her employer for more than a year. Those twelve months of untold pain got us off to a bad start when concealing the truth kept us from receiving expert advice about how to deal with a family disaster. This survey published in 2012 suggests that about a quarter of respondents with dementia conceal or hide their diagnosis: www.alz.org/documents_custom/world_report_2012_final.pdf.

How Can You Get Free, Individualized Help from Actual People?
Call the Alzheimer’s Association 24/7 help line at 800-272-3900. You will be transferred automatically to a local chapter of the Chicago-based organization. This is one of the best all-around services for patients and caregivers, fielding questions and referring callers to national and local resources. The association’s website, www.alz.org, also maintains a broad menu of helpful information on all of the dozens of kinds of dementia.

If the diagnosis is frontotemporal dementia (FTD), the Association for Frontotemporal Degeneration (AFTD) is reachable through its help line, 866-507-7222. You can find general information from the AFTD site: www.theaftd.org/life-with-ftd/newly-diagnosed.  From there you can link to a helpful online pamphlet called The Doctor Thinks It’s FTD. Now What?

What Resources Are Tailored Specifically for Caregivers?
Here is where to find up-to-date information about online communities, tools for navigating care, a stress check, books, a care-team calendar, communication, and more: www.alz.org/care/.

Look at this set of specific steps to take if you’re just beginning to take care of someone else: www.caregiveraction.com/i-just-realized-im-family-caregiver-now-0.

The same site has ideas for long-term caregivers, people with the double burden of taking care of someone while holding a job or living far away from patients.

If, like us, your family members live in separate states, here’s a guide to long-distance caregiving: https://caregiver.org/sites/caregiver.org/files/pdfs/LongDistanceCG_Handbook_2014.pdf.

And this online handbook is a guide to finding, evaluating, and paying for respite care—time off for caregivers: http://archrespite.org/consumer-information.

How Can You Handle the Financial Burden of Dementia?
My dad and I began saving for my mother’s care, or perhaps his someday, in 2008. Better than nothing, but too late. We wish we had discussed potential financial needs earlier and had imagined some worst-case scenarios and how we would survive them. I’ve been lucky enough to have resources to help pay a significant portion of the costs of Mom’s care. But many people are in a different situation. Every family should become informed about what to do before large bills loom.

An easy-to-read online brochure covers a lot of ground about the basics, including long-term insurance, tax implications, what Medicare does and doesn’t cover, and government assistance under the Affordable Health Care act, which ended pre-existing condition exclusions: http://www.alz.org/national/documents/brochure_moneymatters.pdf.

How Can You Keep a Dangerous Driver off the Roads?
One big mistake we made was allowing Mom to continue to drive. We should’ve heeded Dr. Mesulam’s warning and acted on it immediately. Enlisting a physician to tell her she could no longer drive might have lessened the friction within the family. As an option, the internist could have given her a prescription for a driving test at a nearby rehabilitation hospital with the assurance that if she proved she was no threat to herself or others, no one could ground her. She would not have passed.

Advice here concludes that if a stop-driving order from a respected outside authority doesn’t work, you may have to disable or remove the car: www.alz.org/care/alzheimers-dementia-and-driving.asp.

An insurance company partnered with MIT’s AgeLab on research about dementia and driving. The results include tips for conducting difficult conversations and a one-.page agreement for someone with dementia to sign before their judgment becomes clouded: www.thehartford.com/mature-market-excellence/dementia-driving.

What Can Caregivers Do When a Loved One Becomes Incontinent or Aggressive?
These two challenges often drive even the most stoic caregivers, like my dad, to get help or begin a search for long-term care. Online resources focus on what my father had to learn: Show calm even when you’re not. Recognize Mom’s feelings and respect them. For example, say, “Something spilled on you” instead of “You wet yourself.” More here: www.alz.org/care/alzheimers-dementia-incontinence.asp.

For aggression, first rule out pain, then try to find the cause. Music soothes: http://www.alz.org/care/alzheimers-dementia-aggression-anger.asp.

How Can You Find a Good Long-Term-Care Facility While Dodging Thinly Disguised Sales Pitches?
Dad began by calling a company that specialized in placements for people with dementia. He had several long phone talks with an amiable representative in New York. She emailed him a list of local long-term-care options supposedly matching Mom’s specific needs—“memory care”—for her disease.

Later, he learned that the company depended on placements. It would’ve been paid if my father had chosen one of the residences the woman proposed. Was she really concerned about us? he wondered. After driving to all of the nearby options, he found Mom’s future home on his own.

The visits became a good source of advice for him. Salespeople always accompanied him on tours. Typically, no matter what they said, he knew within a minute whether a facility was right for my mother.  But talking to social workers and chief executive officers at each site gave him a fresh perspective on caregiving, in particular with regard to how to tell my mother it was time to move and what he could do to take care of himself and Mom during the transition.

Your tax dollars at work:  To connect with service agencies near you, enter your zip code at a US government source, www.eldercare.gov/Eldercare.NET/Public/Index.aspx.

Considering Brain Donation?
An autopsy is the surest way to learn what caused my mom’s disease and might also reveal hereditary risks my family might be facing. We agreed to donate her brain to support studies on her condition that could lead to a treatment or cure. But autopsies are expensive, and not every medical center can afford them.  Since her case is part of the database where she got her second opinion, researchers there have tracked the course of her disease since 2006. They will pay for the post- mortem examination.

Here’s a searchable database of brain banks around the world: www.alzforum.org/brain-banks.

Make Sure Your Parents (and You) Each Have a Will
Ensure that your parents and spouse have individual wills. And get one for yourself if you haven’t already. The growing number of early-onset dementia cases undercuts the myth that only seniors need wills. To find an attorney near you for wills and other related matters, call the Alzheimer’s Association at 800-272-3900.

Assemble Other Essential Documents Now, Whether Someone in Your Family Has Dementia or Not
Around the time of diagnosis, my parents’ lawyer also drew up durable powers of attorney for each of them.  It was a crucial, low-cost move that allowed my father to pay bills and sign a contract for refinancing their jointly owned home. At the same time, they obtained several other important no-cost documents. Health care proxies named each other as agents empowered to make medical decisions. In 2008, as her own signature began disintegrating toward illegibility, Mom signed a living will, a one-page statement that spelled out her refusal of any “heroic measures.” Later Dad, as Mom’s agent, used a New York State MOLST (Medical Orders for Life-Sustaining Treatment) to give similar but more detailed instructions to the staff on her floor and anyone who took care of her.

What was missing from this file of formal, boilerplate documents was a personal note from my mother in her own words after she knew she had dementia. That document would have told us more about what she meant. It would have shared her wishes about living and fears about dying—or living with “extreme physical or mental disability.”  I’m working on my note now:

If I ever become irreversibly cognitively impaired, I want my family and loved ones to know that they have my permission and encouragement to move me out of my home into an assisted-living facility if they feel threatened by me, physically or emotionally. If I have a terminal condition, they have my permission to give medicine for comfort measures only, and I accept the decisions they will make on my behalf. They should know that I want them to move on with their lives, to be well, and to thrive.  I would like them to let go of guilt and to visit me when they can. I want them to witness the reality of whatever condition I am in, but to remember that I believe things aren’t always as they seem. I want them to seek joy, to look for angels and God winks, to love each other, and to celebrate life, no matter what form it takes.