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Why it’s important to hold a family meeting

I’ve been involved in several family caregiver meetings, including one with my own family when my Grandpa Gus needed care. My goals were simple: Air emotions and make a plan. I opened the meeting by having us go around the table and check in. After each person was able to express feelings, we made sure everyone was clear about grandpa’s diagnosis and what he needed for care. We then allocated the tasks among us. Even though the tasks didn’t end up being accomplished exactly as assigned, it helped to have everybody aware of how much needed to be done. Here are some of the things you and your siblings may be called upon to do:

  • Help with activities of daily living (bathing, eating, getting up, using the bathroom, dressing);
  • Drive to and from (whether to doctor or social activity)
  • Organize medication
  • Financial help
  • Assist with housing (from housekeeping to finding a new living situation)
  • Manage insurance and health care
  • Shop, do laundry, cut grass, etc.
  • Use technology to make life simpler (but more challenging for you to re set, explain, update your parent’s devices)
  • Advocate for your parents
  • Understand any disease, so that you can be a better caregiver
  • Support each other and yourself

I remember facilitating a family caregiving meeting for five adult children and a number of support people. The primary caregiver was tired and wanted her siblings to understand that, by keeping their father on life support, they were not only going against his wishes, but also extending her role to the point of exhaustion. When two of her siblings said that she didn’t need to be at the hospital all the time, she was furious. “Who’s going to catch the mistakes?” she raged. “Who’s going to hold dad’s hand? Who’s going to catch the doctor when he comes by if I’m not there?”

Her need was to be heard and understood, especially when she felt the rest of the family was going against their father’s final wishes. But her siblings needed her to understand that while she had taken on the primary role, it wasn’t an exclusive one. Just as she needed to be there, they also needed to be able to help out and be involved in their own unique ways.

It’s worth noting that even if you’re prepared to play the primary role, it may not always be what’s needed. I could not have taken care of my mother full-time and it was not the right spot for me to play lead with my sister’s care. Don’t let your ego get in the way. Examine the family dynamics and choose the best person for each role. Get in touch if you need help.

It’s never too early, but it can suddenly become too late

After a trip to Minnesota to see family and friends in need of care, I am reminded of the importance of telling others what you want. It’s hard to imagine NOT being able to speak for oneself, but I’ve witnessed a sister and a friend struggle to do just that.

This blog, albeit a bit longer than normal, appeared as an article in Girlfriend’s Magazine earlier this year. Read, enjoy, and then put your wishes to paper:

I had an exchange student from Norway in 2010-11. Henrik and I hit it off immediately. When he asked why I had chosen to have an exchange student, I jokingly replied, “I’m grooming you to take care of me if that day comes.”

Of course I was kidding with Henrik, but sharing my wishes has never been a joke. My Health Care Directive provides a good, basic overview, but like an excellent meal, I want my care team to pay special attention to ingredients that are unique to my tastes. If you find it challenging to write down your potential needs, may I recommend writing a letter? I think of letter writing as creating a recipe book for my care. The following is just one example of what such a letter can contain.

Dear Henrik,

You asked that I let you know how to take care of your “host mamma,” because, after all, you will be one of my caregivers. (You do remember that we made a pinky-swear about this, right?) Ideally I will hold on to my faculties and you won’t need any of the information contained in these letters. But if the day comes when I need you to care for me, these letters will provide insight. (Of course I expect you to train the others on my care team.)

We had tons of fun when you lived with me. We sailed into the wee hours and slept until 10 on Saturdays. You know I love active, full days, but I’ve also grown to cherish my quieter days. Some days will even be sad. Let me have those times, mixed with spells of uproarious laughter and spontaneous kitchen dancing. I like to process my feeling and alone time is important. However, if I’m alone for more than three days, it’s time to get me out (or bring people in).

I may complain when you tell me you’re taking me out, but please persist. If I remain disconnected from others for too long, my depression can easily pull me into a very dark place. Take me to a coffee shop. We can talk, read, or simply people watch. Take me to a bookstore, even if you don’t think I can read. Let me wonder and sit amongst the books. Take me to a movie or on a drive with a stop for ice cream and people watching.

If you invite friends for dinner, don’t get so caught up in the conversation and forget about me. I could easily get lost in the rapid-fire conversations if I have dementia. Include me by simply putting your arm around me. Nod and say, “Isn’t that right, Kari.” It will be your job to help me feel connected, even if I’m not contributing. Don’t worry if I can no longer form sentences. If I’m smiling, then I’m enjoying myself.

This letter writing is a two-way street, Henrik. If you have specific questions or wonder about a specific ingredient in my overall care, please ask. And remember, you’re not to do this all by yourself. You must also take care of you.

Love you!

Your host mamma

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.

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