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Take 15 to get SANE

UCG out in Oslo (1)

I am delighted to interview guests and produce my radio show. I also derive great pleasure from sharing my new bookThe Unexpected CaregiverHow to keep Mom & Dad safe, active, independent and yourself S.A.N.E. I write and speak on staying SANE while giving care because I know how important it is to remain balanced. Trying to care for someone else—especially family—can be calamitous if your internal messages are giving you bad advice. The SANE Method helps you get out of that emotional chaos and move into a balanced approach to giving care.

Now you can take fifteen minutes and learn a little about staying SANE. Teri Knight recently interviewed me on her weekly radio segment, “15 With the Author.” She asked me to start by reading the first paragraph of the Preface, written by Robert V. Taylor:

“Caregiving is a journey into the heart of the unexpected and the unknown. At its very worst it creates resentful caregivers or angry martyrs. At its finest it is an invitation into the depths of what it means to be human and shines a light on life that we could never have imagined.”

Robert’s words beautifully sum up the yin and yang of giving care. I invite you to take a small amount of time to listen to our upbeat conversation about how to use SANE to care for yourself while giving care to others.

I also encourage you to read my book and to remember to use the SANE Methodto help you tackle the highs and lows of caregiving. You, too, can experience the joy and fulfillment often found in providing care for family, loved ones and friends.

 

YOAD—Alzheimer’s isn’t just for the old anymore

While waiting for a flight, I scanned The Times of London. The sidebar on page 14 read: “Dementia kills man, 40.” I was immediately troubled by how we continue to report dementia as a disease. Dementia is a general term for decline in mental abilities. Dementia happens because there is a brain injury or illness. The person mentioned as “one of the youngest reported to die from dementia,” had damage in his frontal and/or temporal lobes of the brain. That damage had caused the dementia, named “Frontotemporal dementia.”

brain_witelsonMaybe it’s because I’m in the field of aging and family caregiving that I want us to have a better understanding of diseases that cause life-altering dementia. I wish that more people understood these diseases, especially as we’re seeing more cases in younger people.

Young Onset Alzheimer’s Disease (or YOAD) is often misdiagnosed as depression or simply “change of life” issues for women. I interviewed a man on my radio show who struggled for years to get an accurate diagnosis. He started noticing changes in his mental capacity at age 39 and his doctors came to the same conclusion: he suffered from stress.

I personally know people with YOAD and it is incredibly difficult to be in public with them. We simply aren’t trained in how to respond to older adults with Alzheimer’s disease and we’re even less prepared to handle awkward conversations with younger people who have YOAD. I remember being in a fabric store with a friend who has YOAD. Someone approached her and said, “I love your jacket; where did you get it?” That was too much information thrown at her far too quickly. She couldn’t answer. I put my arm around her and said, “I remember when you got this jacket, but I can’t remember where you got it.” (My friend shook her head in agreement.) I know it’s your favorite.” (And she again agreed with a smile.) The inquiring stranger accepted that answer.

When you suspect someone is struggling to communicate or if you know someone has YOAD, be extra kind, but don’t treat him or her like a child. If they can’t verbalize, help them out in the most supportive way you know how.

Family drama played out as adults

Siblings Spring 2017My siblings and I are together for a week. It’s a great big mix of fun and confusion. It’s as if we’re back at the dining room table in our childhood home, resuming the roles we played as children. Unresolved family issues simmer just below the laughter, ready to take center stage when the joking subsides.

I have always felt like the black sheep with my siblings but during this trip, I’ve learned that we each, in our own way, feel like “the odd one out.”

It’s not easy to come together as adults and deal with emotions that accompany diseases, aging or family caregiving. For many of us, navigating the rough waters of our childhood was challenging enough. I’ve worked through a lot of my childhood trauma, but still find it difficult to hold on to this new-found strength when in the company of my family of origin.

Our families are the first hierarchical institution we experience, the place where we feel most connected, but sometimes also where we feel most limited. Think about dinner times—where you sat and how you interacted with your family. That scene is recreated when we come together as adults to deal with heavy-duty life issues, oftentimes without the benefit of training. We simply use the limited skills we gained as children and clumsily apply them to adult situations.

I have leaned on the SANE Method™ once again, feeling supported by asking a friend to lunch, feeling appreciated by making time for walks in the woods, letting go of guilt by reminding myself that I’m doing enough, and feeling energized through getting enough rest. We can’t always have easy times with our families of origin, but we can have sanity, and that is in your hands.

Lost in a crowd of familiar faces

My dear friend Sylvia, who suffered from Alzheimer’s disease, was very agitated when I visited her at the nursing home. She was sitting in her wheelchair, banging it against the nurse’s medication cart. As I approached her I heard the nurse address her like this, “Sylvia you’re missing a shoe.” That meant nothing to Sylvia.

Later on, my dad tried to tell my friend, “This is where you can set your water glass.” Sylvia looked blankly at him and held on to her glass.

loneliness in a crowd copyEven though my dad felt that he was clear in his explanation, at a certain stage of Alzheimer’s disease sufferers can no longer follow simple instructions. We also can’t expect them to take part in or to understand our conversations, especially in large groups.

Part of what I do through my speaking engagements is help people understand what it’s like to be with familiar faces, but still feel totally lost in everyday conversation.

The closest I have been to understanding how Alzheimer’s disease can impede communication was when I was on a semester abroad in Norway. I remember one such time where I was the one completely adrift in a crowd.

A friend invited me to a party where I met a number of his friends. My Norwegian language skills were good, but nowhere near good enough to keep up with the rapid-fire conversations that were happening all around me. I felt lost, confused and totally exhausted by the end of the evening.

To top it off, I took the wrong bus to get back to where I was staying. When I finally arrived at my apartment, I was in tears. My roommate greeted me with, “We’re only going to speak English and tomorrow I’m taking you to the American Lutheran Church.” That’s how she helped me regain my footing and feel connected again.

I offer three ways to help you stay connected with a loved one who has Alzheimer’s disease and struggles to communicate:

  • Connect with your eyes—stand or sit at the same level with your loved one and look them in the eyes. Look at them when you’re talking to others, even if they aren’t able to contribute. Let them know that you see them and that they are included.
  • Slow WAY down—speak clearly and in short phrases. Allow pauses in your sentences and space for them to respond. Their response may come out in “word salad,” but nod and acknowledge them; don’t correct them. If they have lost most of their ability to speak, refrain from asking them questions that require complex responses.
  • Use touch—if they can’t form sentences, include them in the conversation by holding their hand or sitting close to them.

If you’re able to shift how you interact with a loved one suffering with Alzheimer’s disease, you also take care of yourself. You stay SANE* in a challenging caregiving world.

*Supported, Appreciated, Not Guilty and Energized, explained in my new edition of The Unexpected Caregiver

It’s time to have The Conversation with Mom and Dad

It was probably one of the most important and treasured conversations I’ve had with my in-laws. Granted, my husband’s parents are pretty special people. They read three newspapers a day, several books each month and discuss world events. They tackle health issues head on and look for solutions and support, rather than dwell on any setbacks.

On our last visit, they sat down with my husband, John, and me, and read aloud each of the points in their Advanced Healthcare Directive. Both John and I have worked in senior housing and have professional experience helping families come to grips with end of life care. I’ve filled out my own health care directive, talked about end of life on my radio show and during presentations, and have been a part of my own dad’s planning process. But we’re older now and our parents are older. It is highly likely that any of our four parents will eventually utilize a health care directive.

two people talkingI can’t lie: It’s not necessarily an easy process, but it is profoundly rewarding. If we hadn’t read through my in-laws wishes, we would have missed several crucial details. Among these is that they do not want Hospice to come into their home. They would prefer to move into a Hospice facility. John and I thought for sure they would want to die in their home, but they have their reasons for not wanting this and now their wishes are quite clear. We know very specifically what care they want in the later stages of their lives.

Yes, we’re talking about end of life when filling out an advanced healthcare directive. But we’re also looking at how we want to be cared for while we’re still living. If you haven’t yet broached the topic with your parents, give it a try. Use my example. If they don’t want to discuss end of life issues, let it go, but try again another day. And while you’re waiting, fill out your own directive. You may just gain rich insights into how you really want to live.

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