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.

A Blood Test to Predict Alzheimer's Disease?

Join the next USAgainstAlzheimer's Network conference call May 16th from 1-2 p.m. EST and learn about a new blood test that researchers say can predict – with 90 percent accuracy – if a healthy person will develop the disease within three years. When my book came out in late 2012, there was no blood test that could diagnose or predict Alzheimer's, so I'm looking forward to participating in this call and learning more. 

Dr. Howard Federoff, the Executive Vice President for Health Sciences and Executive Dean of Georgetown University School of Medicine, led the research team and will brief call participants on why his biomarker study is a potential game-changer.

Anyone can join the call. Register here. 

To learn more about Georgetown's study, read their news summary "New Blood Test Can Predict Alzheimer's, Mild Dementia."

Facing Mother's Day When Your Mom Has Dementia

Mom and me at my college graduation, about 10 years before symptoms of dementia began.

My mother, Judy, passed away a little over a year ago, but as Mother's Day approaches, I don't feel sad. I know that a lot of people do feel devastated around this time of year when their mothers are living with dementia or gone after a long decline. I don't feel sad, because I was able to enjoy many sweet, loving moments with Mom before she died, even when she was in the final stages of dementia. 

I feel lucky that what I remember the most of those years are not the stresses and trauma of caregiving (and there was plenty of that) but the feeling of holding her hand, looking into her eyes, and noticing the smallest of expressions on her face. Over time, I learned that we could communicate with each other through more than words, and that she still loved me even if she was unsure at times of who I was. She knew I was very special to her, and that she was very special to me. Caregiving helped us overcome what had been a challenging mother-daughter relationship, to grow closer. When I think of Mother's Day I think of that essence of Judy, deep down inside beyond the dementia, the essence of her spirit that continued to nurture me as her daughter and her friend well into the final stages of the disease. 

In honor of Mother's Day, I'd like to share a blog post here by Deborah Shouse called "Top 3 Ways to Celebrate Mother's Day When Your Mom has Alzheimer's."  I love Deborah's writing (I reviewed her book "Love in the Land of Dementia" here). She acknowledges the pain of losing so much of the vital person we knew to Alzheimer's or another dementia, but she also appreciates and celebrates the ways we can still connect with their spirit in the moment.

This is the beginning of Deborah's post today on her blog "Deborah Shouse Writes." You can click below to read the rest on her blog.  

“I don’t know what to do about Mother’s Day,” a friend recently told me. “I used to celebrate with my mother, but Mom doesn’t really recognize me now and the holiday won’t mean anything to her.”

My friend was not alone in her dilemma: according to the Shriver Report,  ten million women either haveDeborah ShouseAlzheimer’s or are caring for someone with it.

I’d faced the same issue with my mom as she sank into Alzheimer’s. But I’d decided that celebrating Mother’s Day was important for me and for my family, even if Mom didn’t truly understand what was going on.

Read the rest of her blog post here.

Caregiving Spouses and Partners Receive Little Support at Home

A new report by the AARP Public Policy Institute and the United Hospital Fund shows that family caregivers caring for a spouse or partner struggle to get by with significantly less help in the home than other types of caregivers.  

Why is this true, and what can we do about it?

Here’s a portrait of the “average” family caregiver caring for a spouse or partner with a long-term illness or condition. Do you recognize yourself or someone you love?

You’re in your 60′s, retired, working part-time, or unemployed, and you care for your spouse or partner of about the same age at home around the clock. As her long-time companion, you feel as if you should be able to provide nearly all of the care she needs; in fact, on most days you don’t even think of yourself as a “caregiver.” Honoring your vow of “in sickness and in health,” you would rather care for your partner yourself than hire help.

You receive no assistance from home care aides, and your care recipient is rarely visited at home by health care professionals. Lacking adequate training, you find yourself responsible for medical tasks such as cleaning wounds, monitoring medication, and administering injections, tasks that in the past would have been handled by nurses. You serve not only as your partner’s primary nurse, but as her care coordinator, dietician, cook, housecleaner, launderer, chauffer, and activities coordinator. You are also your loved one’s main source of social interaction. Your adult children don’t come around very often, maybe because you assure them that you’re doing fine. And your friends don’t offer to give you a break from caregiving, maybe for the same reason, or because they have no idea how exhausted you feel. You do what you do out of love (or obligation), and usually you feel as if you have no choice.

I don’t mean to paint a depressing picture, but according to the AARP Public Policy Institute and United Hospital Fund report released last week (“Family Caregivers Providing Complex Chronic Care to Their Spouses”), this portrait reflects reality for the majority of family caregivers caring for a spouse or partner.

Read the rest of this blog post on caregivers.com.

How New Dementia Caregivers Can Become Care "Partners"

Mom, age 74, and me when she lived in assisted living, 2 years into my 8-year caregiving journeyA reader on eCareDiary.com writes:

"We just found out that my husband has early-stage dementia. This news is a big shock to both of us and I know our relationship is going to go through some changes. How should I prepare myself?"

This is an excellent question.  For my post this week as a consultant on eCareDiary.com, I try to answer it.

As I was writing my response, I thought of my neighbor, whose wife has just been diagnosed in her late-60s with Alzheimer's disease. He and I talked over coffee one day, and I hope my tips about becoming a "care partner" will help anyone like him who is new to dementia caregiving.

To the reader's question, I responded:

"I’m very sorry that you are both facing this diagnosis, as it is indeed the beginning of what will most likely be a challenging journey. I am glad, however, that you have already sought help as your husband’s care partner. So often we do not realize that we need support until we are exhausted and burned out.

First, let me note that I use the term 'care partner' instead of 'caregiver' because if you think of yourself as a care 'partner' for your husband, it will remind you that he is much more than a 'dementia patient.' A person with dementia continues to have strengths and abilities, to experience a full range of emotion, and to be able to give as well as receive care. 

How can your husband continue to care for you? In early-stage dementia, for example, your husband may be able to help make some decisions about his care, so that those decisions do not fall entirely onto your shoulders. As his dementia progresses, he will most likely be able to care for your emotional needs at times by listening to you or sharing a hug. Even if he loses his ability to speak, as is common in the later stages of dementia, you will find ways to communicate with each other and share affection..."

Read the rest of the post on eCareDiary.com.