Caring for a Mother with Dementia

In Slate, Kim McLarin writes about her mother's dementia. My mother was a woman whose sharp wit and sharper tongue could be wielded either on your behalf or against your tender person, but there was no denying the weapon was formidable. To see such a woman reduced to dependency is heartbreaking. But what I feel is not just sadness. What I feel is something else.... In many ways, my mother’s life has never been this pleasant. No worrying about money, no worrying about protecting her children from the dangers of a racist society. All her needs are attended to, most desires (You want ice cream? Yes!) immediately met. My sister’s house is spacious and beautiful, far grander than any house my mother owned. More poignantly, dementia has freed my mother of a lifetime’s accumulated emotional wounds and grievances. The abandonment, the betrayal, the abuse, all largely forgotten, the pain finally softened, the memories finally dimmed. But gone too are agency and purpose and what seems to be any kind of interiority, though we can’t know this for sure. Gone is dignity, not in the sense of useless pride but in the sense of critical self-respect. Left behind is placidity atop a teeming helplessness.

He Forgot She Was His Wife -- So He Proposed To Her Again

 From the Washington Post, a tender love story about a man who forgot he was married to his wife and proposed to her, and about the community that came together to give them a wedding. 

She didn’t anticipate that the “for better or worse” part of their wedding vows would be put to the test about seven years later, she said....In January, her husband’s mind began declining at a faster pace. And so 20 years after their romance began, with her husband’s recent proposal, it seemed like perfect timing to renew their vows, she said.

Losing Cissie, Saving Myself: The Perils of Caring for My Wife Through Her Memory Loss

Peter Barnet's poignant memoir of caring for his wife -- and himself -- as her memory fades is Losing Cissie, Saving Myself: The Perils of Caring for My Wife Through Her Memory Loss.

"If you don’t cry, learn to. If you don’t laugh, learn to. Tears and laughter are the best tools to manage stress and win through”

Coming Home Again: Movie Trailer

SUPERNOVA Trailer (2020) Colin Firth, Stanley Tucci Drama About Memory Loss

A Play To Help Conversations and Understanding About Dementia

An actor sits in an armchair on a makeshift stage. People wander in, some elderly, many middle-aged and a few who look to be in their 20s. The actor, partly covered in a blanket, rocks slightly, staring at and wringing her hands. “Puh … puh …. puh,” she says. It’s Connie. This is no ordinary theatre. This is Newbury library at 7pm on a Wednesday. Some, oblivious to the waiting play, talk and exchange books. Most stay to watch the performance.

Emily, Connie’s daughter, appears when there’s a full audience of around 35 people. “Hi mum, it’s me,” she says. Kissing Connie on the head, she talks about her first TV cooking show and looks through a large book. “There’s a recipe of your rock cakes in here,” Emily says. “Here we are, Connie’s rock cakes … gosh 1987.” It’s Connie’s memory book. She has dementia.

The play, Connie’s Colander, follows Emily’s visit to her mother, a retired domestic science teacher who has Alzheimer’s. As they reminisce while Emily explains how she’s bringing her mother’s recipes to the show, we see how their relationship has evolved during Emily’s life and Connie’s illness.

When the play’s the thing to help us talk about Alzheimer’s

Elizabeth is Missing: Trailer | BBC Trailers

Family Caregiving is a Political Issue

The women's movement had a slogan: The personal is political. That applies to family caregiving as well.

[T]he cost of hiring a home health aide to take care of a frail parent can add up to $50,000 or more a year. So tens of millions of individual women across the United States wind up providing the care themselves for free, and bearing its cost in the form of stress, lost wages, and lost opportunities to nourish their other needs, and their families’....One might expect that a problem that affects so many people so profoundly would become a major political issue. Recent years have seen other issues, including ones that disproportionately affect women in their personal lives, become highly politically salient—from sexual harassment and pay equity to the push for universal pre-K education and improved access to child care. Yet even though American women today are politically organized and running for office in record numbers, elder care remains widely viewed as a purely personal matter. Even a news junkie, following the 2020 race closely, could have heard nothing about it.

Why is that? And could long-term care go from being a sleeper issue to one that boosts a candidate out of the 2020 pack?

...

That’s not to say that providing universal long-term-care insurance wouldn’t cause sticker shock when it shows up in government budgets. But the fact is that, one way or another, society is already bearing these costs—mostly in the form of care provided by stressed-out, uncompensated women who have the misfortune of having a family member who needs care and can’t afford to pay for it. What we need is a way to distribute that burden more equitably.

“You can divide the world of politicians into two groups,” says Howard Gleckman, a senior fellow at the Tax Policy Center. “It’s not Democrats and Republicans, it’s people who have been caregivers and people who haven’t.”

The (Possibly) Forthcoming Elder-Care Revolution

Playing Along With My Dad’s Alzheimer’s Confusion

It is so tempting to tell the truth to our loved ones who are struggling with memory loss, even if it seems cruel to tell them sad or scary news over and over. Increasingly, health professionals and family members are meeting dementia patients where they are.

Lisa Romeo writes in Playing Along With My Dad’s Alzheimer’s Confusion:

Deep down I suppose I sensed there was no value in explaining to him that this was not a hotel, especially because hotels, after all, were places that had always meant refuge and pleasure; places he’d felt comfortable. Hotels were where he’d always been fit enough to swim and smart enough to play baccarat. They were places of beauty, indulgence, and order. I knew in my heart that it was not my duty to make him understand — as if I could — that this was a hospital, that he was broken and sick, and that the only “activities” here were uncomfortable and undignified. What good would it do, I reasoned, to replace his imagined “lousy hotel” conversation with one that was more realistic?

...

Personally though, to have hope was about finding a moment — many moments as it turned out — when Dad and I could meet each other on mutually comforting, historically familiar ground. Every time he talked about hotels, I remembered all the lovely days we’d spent in suites and lobbies, at poolside or white-tablecloth restaurants, from Vienna to the Virgin Islands. When he talked of booking a flight or hiring a limo, it busted open the shared vault of family history we’d made together wandering the world. If that past world of ours could serve as a salve for him, in the midst of his psychic turmoil and physical pain, I was more than willing to follow.

How to be sick : a Buddhist-inspired guide for the chronically ill and their caregivers

Toni Bernhard writes about her chronic illness from the perspective of mindfulness. It does not guarantee peacefulness or happiness or even acceptance. But it does help provide perspective that can make it possible for us to be fully present for ourselves and those who love and need us. Boorstein's book book How to be Sick helps teach us how the metaphors of battle may not help us as much as we hope. With an introduction from therapist Sylvia Boorstein, who has inspired many people with her guidance on mindfulness and her imprecation about dealing with life's challenges: "Don't duck."

Toni Bernhard got sick and, to her and her partner’s bewilderment, stayed that way. As they faced the confusion, frustration, and despair of a life with sudden limitations—a life that was vastly different from the one they’d thought they’d have together—Toni had to learn how to be sick. In spite of her many physical and energetic restrictions (and sometimes, because of them), Toni learned how to live a life of equanimity, compassion, and joy. This book reminds us that our own inner freedom is limitless, regardless of our external circumstances. Updated with new insights and practices hard-won from Toni’s own ongoing life experience, this is a must-read for anyone who is—or who might one day be—sick or in pain.

Calling the Birds Home: Portraits of a Mother With Dementia

The New Yorker has an article about photographer Cheryle St. Onge, who has created a series of photographs of her mother as she struggles with dementia. They are heartbreaking but beautiful and in every way a true collaboration.

Dear Prudence: When Mom Won't Admit Dad is Dying

Dear Prudence,
My dad is very sick with lung cancer, has a compromised immune system because of chemo, and has terrible gout in his hand. He was recently diagnosed with chronic obstructive pulmonary disease and is often exhausted. My mom has her own medical issues and, by awful coincidence, is having a terrible episode of knee pain that has reduced her mobility. My main worry is that my mom often says things like “Dad will be all right; he’s going to get through this.” My dad has occasionally talked about death and has started preparing me to take over his personal business (paying the bills, taking care of their estate and property, helping my mom out, etc.) if things take a turn. He also will comment to our mom a bit about death, to which my mom has replied, “I don’t want to hear that,” or “He’s going to be fine. I don’t want to hear him talk like that.” Both my dad and I are worried about what seems obvious: He’s very sick with cancer, may die from it, and is preparing himself mentally and emotionally for that possibility. Is it wrong of me to gently encourage my mom to develop a different coping mechanism to help my dad talk or think it through? Should I simply respect that she will have her own process, which may include a long period of denial (maybe never accepting death until it actually happens)?
—Mom in Denial

There’s a limit to how much you can force this conversation on your mother, which I think you realize. She’s dealing with chronic pain and immobility and a very ill partner, so she may feel like she doesn’t have the resources to think about your father’s death right now. It’s good that you and your father are setting aside the time to prepare for the worst, and to whatever extent you’re able to facilitate a smooth transfer of financial and logistical responsibilities without involving your mother directly, you should continue to act on her behalf. It might help, if she seems deeply distressed, to ask if there’s anything else she needs right now to help her manage her pain or get help taking care of the house. It may also help to offer her the chance to be part of this conversation without trying to force her into anything; say, if you and your dad set aside an afternoon to meet with a lawyer and estate planner to go over his will and end-of-life wishes, you can tell your mother about it in advance, ask her to join you if she’s able, but ultimately leave it up to her. You can stress that you’re not giving up: “We all hope that Dad is able to recover, but we want to be prepared for everything, including the worst.” But if she can’t or won’t participate, you shouldn’t push her.

Dear Prudence


An update from the letter writer:

Re: Mom in denial: Thank you so much for sharing this information. The rest of my family were all in the camp that it was ESSENTIAL to be absolutely positive and upbeat about my dad’s possibility of recovery. The doctors and I seemed to be the only ones who understood that Dad’s situation might worsen. He actually did pass on March 5, and I have spent some time worrying that I was unable to provide enough positivity and/or assistance to help him get well (because of my sisters’ inability to accept the possibility of death/wanting second opinions/wanting to change his care drastically, and all that comes when someone is in denial, in my opinion).

I appreciate the comment so much from this health care professional, as it tells me that I understood things and am not a terrible person for it. My mom actually did change and accepted my dad’s condition better after a heart-to-heart with a palliative care doctor in his final days. You do make a big difference, thank you. I miss him terribly but at least I can be assured that it was his time to go.

A Man Cares for his Wife with Dementia -- With the Help of His Girlfriend

Design/cooking/lifetyle expert B. Smith has dementia. The woman once called "the black Martha Stewart" once presided over an empire that included restaurants and magazines, but now she has dementia. Her husband still cares for her lovingly and keeps her fans up to date through social media. But some of them are upset because he has a girlfriend, who helps him in caring for her.

“We were friends,” Alex said. “I didn’t want to go out with a married man.” Plus, she’d socialized with B. at charity events. But when Dan invited her to breakfast at a popular hotel with B., she accepted.

Finally, she saw. “This is not a man cheating on his wife,” she told herself. In the middle of breakfast, Alex helped B. to the bathroom.

Alex had a nurturing spirit. And she saw the same in him. “What I admire about him,” she said, “is that he takes care of her.” ....Despite the online response, those who know Dan and B. defend the relationship. “Anybody that would judge Dan knows nothing about the disease and the toll it takes” on a marriage, Schnayerson said. “If you can find a companion who can help you get through that, all power to you.”

Dana also pointed out that her father has not abandoned B. by any measure. “She’s in this house. She’s here every day,” she said.

And, on many days, so is Alex. “If I can be compassionate to her,” Alex said, her voice breaking, “if I can do anything for her, it makes me feel good. If it is giving her something to drink, or making her something to eat — she loves to eat — I feel good.”

Lifestyle guru B. Smith has Alzheimer’s. Her husband has a girlfriend. Her fans aren’t having it.

Peter Rosenberger: There Used to be M&M's

Many thanks to Peter Rosenberger, author of 7 Caregiver Landmines and How to Avoid Them for permission to publish this touching article about the bittersweet experience of caring for his father. "I’ve often heard that, “… There’s no pain like watching your children hurt.” Watching your parents hurt must run a close second." As the Talmud says, "When the father helps the son, both laugh. When the son helps the father, both cry."

There used to be M&M’s

For as long as I can remember, when my father came home from Reserve duty in the military, he brought each of my brothers and my sister and me a pack of M&M’s. Stretching past his military service as a chaplain, he and my mother extended the treats to when we returned home from school. Each time we arrived with our luggage (sometimes filled with dirty laundry), we’d walk into our rooms to find a bag of M&M’s waiting on the pillow.

When they moved away from the house where they raised five sons and a daughter, their new home carried the tradition. Bringing our wives, then children, and now even our grandchildren, the familiar brown-bagged treats (sometimes the yellow bags of peanut M&M’s) from my parents awaited every family member.

Except this year.

Nearly succumbing to congestive heart failure, my mother endured a dramatic and difficult year — as did my father. A U.S. Navy chaplain (Captain) and pastor for nearly 60 years, my father stepped into the role of caregiver for the first time, and I watched the process take a toll on him.

It felt odd. While I’ve cared for my wife with severe disabilities for more than 33 years, I’ve never seen my dad in this role. I found myself placing a hand on his shoulder much like he did for me many times following my wife’s now 80-plus operations. He sat with me in countless ICU’s, hospital rooms, and waiting rooms. Now I sat with him.

His seasoned faith remains intact and strong, yet he struggled to wrap his mind around the relentless assault of continued medical setbacks. With the same gentleness and encouragement he offered to me over decades of caregiving, I returned the favor.

I’ve often heard that, “… There’s no pain like watching your children hurt.” Watching your parents hurt must run a close second.

With a herculean effort by medical staff, along with my mother’s grit, she pulled through. While not where she’d like to be, she’s further than most expected. After a couple of months away from them, we returned to their home for Thanksgiving. They looked tired, older, but optimistic. The family pulled together, and the house looked great. The only significant difference I noticed was an oxygen tank in their bedroom. 

Yet for the first time in my memory, no M&M’s waited on the pillows. The absence of those treats indicates a passage, and a farewell to parts of who they used to be. Their home stands in a heavily wooded area of upstate South Carolina. As we prepared for the holiday, the trees surrounding their home continued shedding an entire color palate of leaves. The loveliness of autumn is a sad one that brushes hearts the same way the wind grazes branches.

So it is when watching those who loomed large in our lives diminish in vigor, but not in beauty. As many will attest, it’s the shedding of smaller things — the wisps of common things taken for granted — that often bring a tear.

Deep feelings often rise to the surface faster during holidays. For many Americans, a difficult season of slow goodbyes, bittersweet celebrations, and, for some, the ache of absence. 

Yet, not all is sorrow. Slowing our lifestyles to the pace of our hearts, we can cling to each other a bit tighter. After dinner, we can pause a little longer at the table — or sit quietly for an extra couple of minutes with those we love. If a chair is empty, we can choose to fill that seat with cherished memories. 

The treats I’ve enjoyed for a lifetime no longer await me, but the loving hands that placed them are still here to hold. Placing that candy on their pillows instead, I now possess a greater understanding of the joy they both shared — for a lifetime. 

A joy in something as simple as … a bag of M&M’s.

Peter Rosenberger hosts a radio program for family caregivers broadcast weekly from Nashville, TN on more than 200 stations. He has served as a caregiver for his wife Gracie, who has lived with severe disabilities for more than 30 years. His new book is 7 Caregiver Landmines and How You Can Avoid Them. @hope4caregiver

Peter Rosenberger: The Orientation and Disorientation of Caregivers

Many thanks to Peter Rosenberger, author of 7 Caregiver Landmines and How to Avoid Them, for permission to publish this insightful article.  "Suffering and sorrow tend to put differences into perspective."

The Orientation and Disorientation of Caregivers

Walking into Waffle House for breakfast, I held the door for two men. The younger man awkwardly helped his older companion with a walker and oxygen tank. No stranger to these things myself, I waited for several moments while nodding to the younger man. Mustering a sad smile, he expressed his gratitude for my patience.

As they slowly exited, I stepped in—only to be stopped by one of the longtime servers. “Peter, go out there and talk to that young man! His name is Randy, and I ain’t serving you breakfast ‘til you do,” she stated forcefully.

Decades of Waffle House visits with her taught me that disobedience usually involved a tongue-lashing. And, she really wouldn’t serve me until I talked with him.

Dutifully returning to the parking lot, I approached Randy, stuck my hand out and said, “I was told to come out here and talk with you—and Judy won’t serve me breakfast until I do. What’s going on?”

Randy’s eyes instantly filled with tears while sharing that this was their last breakfast out before hospice came that afternoon for his partner. Listening, I understood why Judy sent me back to the parking lot.

I speak fluent caregiver.

Randy added, “We’ve been together for 24 years, and I am just so upset. I don’t know what to do. I’m afraid I’ll go into my room and cry—and won’t be able to stop.”

Chatting for a while, as Randy’s companion quietly sat in the car with the engine running, I offered things learned from a lifetime of caregiving for my wife who lives with severe disabilities. Giving Randy my card and sharing he could call anytime, I prayed with him, hugged him, and watched him breathe a bit easier. Returning to the restaurant, Judy, with brimming eyes, nodded her thanks and served me breakfast.

Strengthening and encouraging my fellow caregivers serves as one of my deepest passions. I understand the brutality of the journey in ways few do. I also understand that the caregiving burden borne in the gay community is all too often compounded by judgment from people of faith. People who share my faith.

Caregiving respects no sexual preference, creed, politics, religion, or race. The harshness of caregiving saves all its assaults…to wage on the bonds of love. In the face of a chronic illness or disability, that love isn’t sexual or about sexual orientation. The love compelling one person to put themselves between a vulnerable loved one and even worse disaster—is something far different and worthy of respect.

Suffering and sorrow tend to put differences into perspective. The ministry of grace vividly displayed from the cross of Christ, can flow from us without this incessant need to fix, change, or dispute those who live differently.

In that parking lot, Randy and I were not gay versus straight. Nor were our doctrines and creeds discussed. While I remain devoutly evangelical with deep convictions, I never asked Randy’s beliefs. I just saw a fellow caregiver grieving as he ministered to a suffering loved one. Randy and I have that in common.

Caregivers struggle. They deserve care—not judgment for their fears, mistakes, or even their lifestyle. No one has ever argued me into a relationship. But there are those who loved me into one.

When the AIDS epidemic crashed upon society, all too many in the gay community were shunned. In the process, a vast number suffered with a horrific disease without the comfort of Christian ministry. That tragedy can’t be undone. Yet, that same community stands in need now, as they grieve while caring for aging and disabled loved ones.

Acceptance is not agreement. In order to care for someone, one is not bound to condone a lifestyle operating in contrast to Scripture. Yet, ministering hands reached into my grief and trauma to help me get to safer ground. I would be a poor steward of that help …that grace …if I didn’t offer it to others as they journey down the heartbreaking path of a caregiver.

While I’ve learned to speak fluent “caregiver,” it’s my Savior’s native tongue.

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Peter Rosenberger hosts a radio program for family caregivers broadcast weekly from Nashville, TN on more than 200 stations. He has served as a caregiver for his wife Gracie, who has lived with severe disabilities for more than 30 years. His new book, 7 Caregiver Landmines and How You Can Avoid Them releases nationally Fall 2018. @hope4caregiver

Who Cares for the Carer? From Rob Lowe

Taking care of my mother was scary, unbelievably stressful and painful. It was also a time to be with her in a way that might never have happened under other circumstances. When she passed in 2003, I felt that we’d had the talks we needed to have, that we’d spent the time together we needed to spend. I have friends who’ve been through deaths of parents and they feel cheated; if only they’d been able to tell them how much they loved them, if only they’d done this or that. One of the hidden gifts of being a caregiver is that you’re with them. You’re able to do and say all of those things in its proper time.So be present for it. There is every reason to believe that you will look back on this chapter with satisfaction. In the meantime, don’t hesitate to get help. That’s why I’ve partnered with EMD Serono and EmbracingCarers.com, where you’ll find invaluable information regarding everything you’ll be, or are, going through.

Rob Lowe in Newsweek

They Call It "Therapeutic Lying" -- Deceiving a Dementia Patient into Treatment

We’ve tricked Mom into coming here because she’s not safe living alone. Moments before, we set up her room with photos and labeled her clothing. Nurses recommended we stay out of sight. I feel like the worst daughter.

But according to doctors and social workers, we’re doing the most caring thing.

The Dementia Heist

New from the BBC: Care

Dementia: Letting Memory-Impaired Patients Maintain Some Agency

From William Haseltine's thoughtful series of articles about caring for people with dementia:

allowing residents to sleep, eat, bathe, and congregate when and how they want has ripple effects across the organization.

“If you let people sleep as long as they like, they are far happier when we help them up out of bed,” says Ms. Mitchell. “We need fewer staff when the resident is not angry that we woke them up and are forcing them out of bed. It is the same for eating, showering, and all other activities.”
...

Caregivers and family members often take control away from people living with dementia in a misguided attempt to protect the person from physical harm. Mitigating risk for people living with dementia in long term care centers and at home is an important aspect of care that cannot be overlooked.

The Changing Demographics of Caregivers -- Younger, More Diverse

In the U.S., the average caregiver for an older relative is a 49-year-old white woman, data from the National Alliance for Caregiving and AARP shows. But, in 2014, one in four of these 40 million caregivers, like Keenan, were between the ages of 18 and 34, according to a May report by AARP Public Policy Institute.

These young adults make up the most diverse generation of family caregivers yet, with more than one in four identifying as Hispanic or Latino, and nearly one in five identifying as black. They’re also more likely to identify as lesbian, gay, bisexual or transgender, the report stated. And they’re nearly evenly split along gender lines—while 40 percent of all family caregivers are men, 47 percent of millennial caregivers are women.

Young Adults Are Caring for Aging Loved Ones