When Dementia Changes Sexual Behavior: Review of Groundbreaking New Book for Caregivers

My mom, Judy, age 77 in her memory care facilityIs it important to understand and respect the sexual needs of people living with dementia?

Dr. Douglas Wornell, author of the new book “Sexuality and Dementia”—the first comprehensive book of its kind—says “yes.” He addresses common challenges caregivers face when dementia affects intimacy or causes inappropriate behavior.

My mother, Judy, had vascular dementia from small strokes, and probable Alzheimer’s disease. One day she was found in her memory care assisted living facility in the room of a male resident, sitting down on the edge of his bed with her pants off and her Depends on. The man—a short, portly fellow I knew my mother had eyes for, a man we’ll call “Bill”—was standing in front of her with his pants and underwear off. The staff couldn’t tell what had occurred between Mom and Bill exactly, but the two were “redirected” to other activities, and I was asked to take my mother to the E.R. for an exam. Bill’s family, in turn, was required to hire private aides around the clock.

Many of us who care for a family member or friend with Alzheimer’s disease or another dementia are likely to encounter this kind of situation, or something similar. It can be challenging and upsetting, even if you believe, as I did, that your loved one with a cognitive impairment should be allowed to express their sexuality in safe ways.

Fortunately, family caregivers and health care professionals can now refer to a slim but comprehensive new book, “Sexuality and Dementia: Compassionate and Practical Strategies for Dealing with Unexpected or Inappropriate Behaviors,” by Dr. Douglas Wornell (Demos Health, 200 pages).

Read my review of this book, and more about my experiences with Mom, in my post this week for caregivers.com.

Senior Homes Awards for Best Books for Caregiving and Aging

 

I'm very pleased to share that my book, "Inside the Dementia Epidemic: A Daughter's Memoir," was judged as the #1 finalist in the Senior Homes Best Books for Caregiving and Aging award, second only to the classic dementia guide "The 36-Hour Day"!

Only 4 points difference in the judging, but there was really no way to compete with a giant that has been around for years. I'm honored, though, to see my book at the top of the list for finalists, based on the judges' scores.

Check out the Senior Homes page for more recommended resources for elder caregivers.

 

Why Women Need Public Long-Term Care Insurance--an OWL Report

Mom at age 77, in her memory care facilityWomen continue to live longer than men, are the primary consumers of long-term care, and as family caregivers provide more hands-on care (such as feeding, showering, and toileting) than men. Many men are hands-on caregivers, of course, but long-term care remains a major issue for women.

A new Mother’s Day report from OWL (the Older Women’s League) explains why U.S. women need a public long-term care insurance program similar to those of other nations.

My mother, Judy, who passed away a year ago with Alzheimer’s disease at age 80, did not have long-term care insurance. Instead, as a divorced elementary school teacher raising me on her own, she tracked her living expenses on color-coded spreadsheets, and pinched every penny her whole life. After investing in some mutual funds, she retired with a modest pension and about $150,000 in savings—all hard-won. Unfortunately, six years of long-term care wiped out her savings—and she needed two additional years of care.

In my post this week for caregivers.com I take a look at OWL's report, and consider how the last years of my mother’s life (and my own as her caregiver) might have been less stressful and financially ruinous if she had had private LTC insurance or access to the kind of public LTC insurance many nations offer. 

Read the post here.

Highly Recommended: New Book, "The Mindful Caregiver"

When the publishers of Nancy L. Kriseman’s new book “The Mindful Caregiver: Finding Ease in the Caregiving Journey” (Rowman & Littlefield, 2014) approached me for a review, my first thought was “Caregivers are already ‘mindful.’ We pay close attention every day to detail after detail. The last thing we need is to have to pay more attention.”

My understanding of the word “mindful” was limited to the definition “bearing in mind,” as in “it’s important to be mindful of the needs of others.” Caregivers tend to be hyper-aware of the needs of those around them, often at their own expense. Thus, I opened this book with some reluctance to learn more about being mindful.

Nancy L. Kriseman, LCSW, author of "The Mindful Caregiver"I’m glad I overcame my resistance. “The Mindful Caregiver” is about so much more than paying attention to the needs of others. In fact, the central message of Kriseman’s book is that we, as family caregivers caring for a family member or friend, need to pay attention to own needs above all else. Our “first order of business,” she says, is to “check in” with ourselves about how we are doing:

Mindfulness "reminds you that you matter!  It nudges you to be kind and gentle, nonjudgmental, and compassionate with yourself. It can help you prioritize, set limits, stay true to yourself, and ultimately feel more at ease during the caregiving journey.”

To read the rest of my review of "The Mindful Caregiver," go to caregivers.com.

Moving Beyond "Parenting" our Parents: One Daughter's Story

My mother, Judy, and me early in our caregiving journeyIf you care for a parent who is living with Alzheimer’s disease or another dementia, it can feel as if you’ve switched roles—as if you are the parent and they are the child. There is some truth to this, but your parent remains an adult, and at some level the mother or father you knew. It’s important to treat them that way, even if  it seems that they are not the same person they used to be. And you may be surprised to find new ways to connect.

In 2005 I wrote in my journal:

“My mother may sound and act like an adult but is now, in essence, my third child. I would like her to function as an autonomous adult, but she can’t. She doesn’t want to be dependent on me, but she is.”

Mom had early-stage dementia, could no longer live alone, and had moved into my home with my young family, turning our world upside down.

Later that year, after Mom moved into assisted living, she said something to me one day that showed that she, too, believed that we had switched roles. It seemed to be a turning point for both of us.

Read more of this post on caregivers.com.