Tag Archives: The Unexpected Caregiver

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.

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

A Valentine’s Day Reminder for all ages

I will never forget where I was and how I felt when my dad informed me that he had asked a woman out on a date. A date? My dad…but wait, he’s married to my mom. My mom had died in January of 2002 and it was the fall of 2003 when we were having this conversation. I knew it wasn’t too soon, but none-the-less it felt, well, weird. My dad was informing me that he had asked a woman out because we lived in a small town and he was sure I’d hear about it from one of the many local town criers if he didn’t tell me himself.

He also wanted me to meet her, which I did. Is this what it feels like when ones parents meet their child’s first date? I wasn’t sure what my role was, so I asked my dad just what he wanted from me. My approval? My advice? Then, after I breathed in and out several times, I realized that my dad simply wanted me to share this part of his life with him. Nothing more was required of me.

snow heart in mittensForget attaching the adjectives “cute and little” in front of “older couple.” The Silent Generation (those born between 1928 and 1945) is redefining intimate relationships. My dad’s generation is formally known as the people who “had to get married in order to have sex.” They are now forming new relationships, ranging from walking down the traditional marriage path to living in separate houses in different states. It doesn’t matter if they share a bed or not. What matters most is intimacy—closeness, companionship and love. Valentine’s Day serves as reminder that we all—no matter our age—need relationships that sustain us. Happy Heart Day all!

Four tips to laughing with your folks

I love being with my dad when he watches any of Peter Sellers’ Pink Panther movies. He literally cries uncontrollably and I end up cracking up just watching him. Laughter often comes spontaneously, but there are some days when I have to purposefully seek out fun. Busy caregivers can easily get buried in all the tasks of giving care. “I don’t have time to goof off,” I had one family caregiver tell me. I hear you and I understand that there are many moments in life that feel nearly joyless.

So how do we bring back the fun? How do you play, goof off, act silly during a day? I am fortunate that the man I married is never without a joke—however screwy. And even though most of his puns and word plays are “groaners,” I laugh (as do his daughters; one Mallory and Johnof them seen in the picture,  being silly with dad). It’s good for our emotional health to laugh and it certainly lifts our moods, but that’s not the only benefit.

If we constantly work, work, work, without relief, then our brains — and our bodies — begin failing us. Want an upside? Playing actually helps us get things done. Think about times you’ve struggled to complete a task, becoming more and more frustrated with yourself. Then someone does something funny, you laugh — and suddenly the task is not so difficult. When we shift our thoughts and do something out of the ordinary, our brains are refreshed and begin humming along again. Our bodies benefit, too. It’s been said that when we laugh, we release endorphins — the brain’s feel-good chemicals. Some researchers also contend that as well as lowering blood pressure, laughter increases oxygen in the blood, which encourages healing. Whether or not that’s true, I’ve found that a good laugh is worth its weight in gold.

When it comes to spending time with your parents (something your parents crave and you may dread), nothing says you can’t spend your time together playing. If you’re constantly checking your phone when you’re with your parents, or fidgeting trying to find something else to chatter about while wondering how soon you can beat a hasty retreat, odds are you really need to play.

Try these four tips:

  1. Watch a funny movie together (Dirty, Rotten Scoundrels is one of my favorites)
  2. Put on music from their era and dance (Nothing beats 50s dance music with my dad!)
  3. Reading aloud from a favorite joke book (I’m a sucker for Garrison Keillor’s Pretty Good Joke Book)
  4. Retell funny family stories (Like the time my then little brother Dave had to “relieve himself” on a car trip. Dad pulled the car off the highway, only to have Dave face the car, spraying the front fenders, causing my dad drive in reverse down the highway shoulder!)

Caregiving means taking care of some tough issues. Don’t let it consume you. Give yourself permission to laugh and include some fun time! You can find many more tips in my updated edition of The Unexpected Caregiver. And please, share your tips with me.

How long should I grieve?

OLYMPUS DIGITAL CAMERAI remember crying at the oddest times after my mom died. I burst into tears while sitting on the toilet once and another time when presenting in front of a group. Tears come and it’s okay.

Grief is a reaction to loss and is ongoing in many caregiving situations. The person may be alive, but we’re watching pieces of them disappear. Caregivers suffer from a double grief: grieving the end of a loved one’s life, but also grieving the small, constant changes that continually take away and diminish the person we once knew. There’s also another grief: the loss of our life as we once knew it and as we had planned it to be (we don’t have more than one life).

Generally, we don’t “get over” grief. There is no set time frame for grieving, but we do want to move through it rather than get stuck in it. For some, grieving has been such a constant companion during caregiving, that once our loved one dies, it is more of a relief than a continuation of sadness. There is no judgment about grief, but please recognize that this period of time — however long or short — is part of the process. Allow yourself time. Feel what you feel, share with others and seek support. Then give yourself permission to move beyond grief. The goal isn’t to forget. The goal is to survive the time of grief, find a way to hold onto the memories and cherish what you had.

Taken from the New & Expanded Edition of The Unexpected Caregiver®: How to keep Mom & Dad active, safe, independent and yourself S.A.N.E.

Feeling Appreciated…even during the holidays

If you ask some of my friends and family, they may tell you that I don’t like Christmas. That’s not true. What is true is that I’ve often felt let down at Christmas. Not because of the holiday itself, but, well, because it’s also my birthday. Celebrating my birthday always seems to be squeezed in between driving to the relatives and opening presents. Probably one of the most painful happy-birthday-christmas-bulbmemories I have is overhearing my grandma say to my sister, “Oh, I forgot Kari’s birthday. Grab a present from under the tree and we’ll put ‘Happy Birthday’ on it.”

When I started working on S.A.N.E.™ (Supported, Appreciated, Not Guilty and Energized) for family caregivers, I looked at aspects of my life outside of caregiving that would also benefit from my SANE Method™—Today I’m asking myself, “What can I appreciate about being born on Christmas Day?” Instead of expecting others to create a “happy day” for me, now I think of SANE™ and realize that feeling Appreciated is my responsibility.

How freeing it is to let go of expectations! Rather than planning my reaction to what doesn’t happen, I plan parts of the day and allow other parts to simply flow. Among other things, I appreciate that I’ve started a new tradition of birthday breakfast. French toast, bacon, coffee, and on the occasional year, a mimosa. It is that simple.

I came into this world at dinnertime on a cold Christmas Day and I took my time. Maybe that’s why it has taken me a while to learn how I can feel Appreciated on my own, from within. On this holiday season, I wish for you to find ways to Appreciate all that you do to create light in the dark winter. Know that feeling loved and Appreciated comes from within first, before it can be shared.

If You could stop the world, would you?

In the 1960s musical, “Stop the World—I Want to Get Off,” the lead character, Littlechap, breaks the fourth wall and addresses the audience whenever he wants a do-over. How many times would you say, “Stop the world”?

stoptheworld1I acted in this play while at St. Olaf College and often recall the poignancy of that phrase: “Stop the World.” Maybe if we were not racing around, we wouldn’t need do-overs. Maybe if we measured twice, we wouldn’t make so many mistakes cutting. I’m guilty of this: The busier I am, the more successful I feel. But this is a ruse, plain and simple. I love how Brené Brown puts it: “What we know matters, but who we are matters more. Being, rather than knowing, requires showing up and letting ourselves be seen.”

Being rather than doing also requires presence. Especially during the holidays, it’s too easy to do, do, do—go, go, go. It’s much more challenging to sit quietly and not do. It’s nearly impossible to understand that one’s self worth has little to do with how busy one is.

Possibly the best gift you can give your loved ones (and yourself) this holiday season is to stop: turn off your cell phone, shut down your computer and just hang out with your loved ones. It won’t be easy to do at first. If you’re like me, sitting still is not my norm. But the times I’ve let silence be my friend have rarely failed me. Don’t get me wrong, I love the big dinners and festivities of the holidays, but sometimes, every once in a while, let yourself off the hook and focus on the being rather than the doing.

Are you a care TAKER or care GIVER?

It’s a simple difference really—do you build your self-esteem around caring for another person? Do you get a small “high” from caring for another person? This is care TAKING. You may be late to work, snap at your family, or complain that you’re the only one who cares. Care Taking is all about your ego and it’s not healthy.

Care GIVING is about compassion, being centered in love and gratitude. This doesn’t mean that you set aside your own needs, however. Give care while staying S.A.N.E.—Supported, Appreciated, Not guilty and Energized™. How do you support yourself? Do you appreciate what you do for someone else? Are you able to drop the guilt? And where do you go to refuel yourself when the duties of caregiving seem overwhelming?

I’m happy to announce that the new and revised edition of my book, The Unexpected Caregiver. I’ve added six new chapters to help you, the family caregiver, look after your own needs while giving care to a loved one. I’ve even added a chapter on the oftentimes tricky subject of your parents dating. You can order a copy for yourself, family and friends. I’m thrilled that I can offer this resource to you. Happy reading and please, be good to yourself.

This month is for you

November is the month that the U.S. officially recognizes family caregivers. Why is this important? Simple. Family caregiving is a job, a role you take on many times without any pre-planning. It’s not an easy journey and many times it requires you to turn your life upside down in order to meet the needs of your loved one. I think it’s valuable that there is month dedicated to YOU—the Family Caregiver.

I’d like to share parts from this year’s Presidential Proclamation:

“Our Nation was founded on the fundamental ideal that we all do better when we look out for one another, and every day, millions of Americans from every walk of life balance their own needs with those of their loved ones as caregivers.”

take-care-of-self-first-copyThe theme of this month is “Take Care to Give Care.” You can’t give when your tank is empty. Well, you can…but it will be harder on both you and your loved one. Spend just a moment to think about how you can refill your cup.

“This month, and every month, let us lift up all those who work to tirelessly advance the health and wellness of those they love. Let us encourage those who choose to be caregivers and look toward a future where our politics and our policies reflect the selflessness and open-hearted empathy they show their loved ones every day.”

“Choosing” to be a family caregiver rarely feels like a choice. I encourage you to turn that around: Make a conscious decision about who you will be as a family caregiver. Rather than feeling like you “have to,” and that you’re “the only one,” find ways to support yourself. You don’t have to do this job alone, but you do have to ask for help. It rarely comes unbidden.

This month or any other time, I’m here for you.

3 quick tips to re-energize yourself

Last night I heard my friend coughing all night. I’m concerned that she’s not taking care of herself as she splits her time between caring for her dad and her children. With each visit, I see more of her time being eaten up by the needs of others. Acquaintances say, “Oh you’re so good to your mother.” Yes, she is—but I also want her to be good to herself.

Caregivers feel drained. It’s a tiring and energy-robbing role. In the midst of feeling exhausted you must sneak in ways to regain necessary energy. Try these three suggestions:

dscn8428

  1. Go for a quick walk around the block or into the woods. Breathe in the fresh air and imagine the oxygen filling up your brain.
  2. Crank up the music and dance. Both the physical movement and the energy of the music will give you energy. (My dad and I often break into random dance. As you can see in the picture, we enjoy!)
  3. Talk with someone about a fascinating book you’re reading. Get into it and share feelings and ideas and research even more about the topic.

You need energy to give care. You also need energy to enjoy the parts of your life that are not about being a caregiver.

No, You can’t do it by yourself: 5 Tips for Caregiver Support

 

My mom burst into tears in the middle of a restaurant dinner and instead of asking, “What’s wrong,” I was embarrassed. I thought, “Why can’t she pull herself together?” My mom had a disease called Huntington’s disease, which renders its victims incapable of acting what many call “normal.”

If you take care of someone with a disease that causes dementia, you are not living a “normal” life and caregiving is therefore doubly challenging. You may think, “He’s doing this just to drive me crazy,” when in reality the repetitive questions or unpredictable behavior are not malicious. You’ve known this person for years and now you are their caregiver—helping with daily tasks, while getting to know someone who is actually a very different new person.

Think of it this way: Do you ever get really frustrated at a vending machine when it won’t take your dollar bill? You straighten out the bill, insert it again, and it just keeps spitting it back, even though the bill looks fine? Your loved one may also look fine on the outside, but their brain is not working the way it used to. You need to find a new way of being with him or her, while you simultaneously figure out how to take care of yourself.

I know you want to scream. Some days you even yell at your loved one, but that only adds to your stress. This is why you must find support—a person or a group which allows you space to say all the things you simply can not say directly to your loved one. Being supported along your caregiving journey is the first step in being a S.A.N.E. caregiver—Supported, Appreciated, Not guilty and Energized. Start by finding support for yourself:

  1. Educate yourself about the disease so you know what to expect.
  2. Let off steam with a trusted friend.
  3. Set aside a half-hour a day to do something just for you.
  4. Join a support group (or start one).
  5. Find ways to laugh every day.

You know you would do anything to help out someone in your shoes. It’s time to take that same spirit of helpfulness and turn it inwards. Ask for help and let others support you.

Incredible Cost of Giving Care

There is a cost to caring for our parents and loved ones that goes beyond the financial. Our schedules are eaten up by hiring caregivers, going to doctor appointments, answering weepy phone calls, defending our need for time away. Instead of complaining outright, we complain in public restrooms to strangers or at lunch to our best friend, while woofing down a sandwich and surfing the net for assisted living options. We yell at our kids, forgo the workout at the gym, eat out of the vending machine, and ignore those activities that gave us so much joy. They’re our parents, after all! We must take care of them.

Why do we do it? Why do we put ourselves in the role of giving care to our parents or other family? Reach beyond the usual response of, “If I don’t do it, who will?”

In my recent radio show, author Katy Butler shares her caregiving story. Her touching and trying account of looking after both parents will cause you to think. As will Dak’s blog Dying Gone Haywire from 2013.

I understand the pull of wanting to do what we “should,” and needing to set boundaries. I’m here to help and want to hear from you.

Expressing love for one’s father

My friend Evan’s tribute to his father resonated with how I feel about my dad. Evan tenderly illustrates the importance of recounting a parent’s influence and meaning in one’s life. I share this in hopes that it will inspire you to do the same, if not at least contemplate gifts and lessons you’ve received from your parents.

By Evan Brown

No recipe, but maybe an acknowledgement of the recipe of life.  Sometimes we face moments we know are coming, think we are preparing for and find ourselves so unprepared and wishing for more…more time, more conversations to say all the things we wanted to have the chance to say, more time to just be in the same room enjoying their company.

My father, Lee Brown, passed away, gently in the early morning.  He was 82 and had spent a long time with some serious lung issues.  I will really miss him, for all that he shepherded out of me. Read more »

Caregiver support online

CaregivingNOW_OnlineConvoBannerWebSmallThere is a forum where you can get support on your caregiving journey. And if you’re not a caregiver (yet), I’m sure you know someone who is. Sign up here and join the conversation: http://unitedfrontmn.org/caregivingnow/.

We tend to avoid having the conversations around giving care because we feel we ‘should’ be able to do this without assistance from others. Well, that’s just not the case. We all need help when caring for someone else, lest we lose ourselves in the process.

November has been deemed National Caregivers Month and I sincerely hope that this one month of highlighting the often-times tough journey of family caregivers expands the understanding of this role.

Join me today for a special 3-day conversation focused on helping you create more joyful holidays with clearer boundaries. As always, if you want one on one help, click here. And if you’re looking for an on-going support group, check this out.

Money, Age, and Big Foot

Recently I posted a question on Facebook asking for top issues when it comes to caring for Mom and Dad. One response was: “I hate trying to make sense of their finances & realizing, by looking through checkbook registers for instance, that dementia was grabbing ahold of my mom much earlier than I realized.”

There are different types of loss. When dementia takes hold or death comes too quickly, financial issues tend to scream for your attention. Right in the middle of dealing with emotions, you need to tackle financial concerns.

I interviewed Aaron Britz of Legacy Wealth Management recently. He specializes in helping women gain financial control during a life transition, such as loss of a loved one. The interview is both upbeat and informational and could be just the ticket for moving you from fear of finances to getting a grip on this often times emotional issue.

And for a completely upbeat and upside-down look at financial issues, I call on Dak Gustal. Be wise…bite off these financial issues and if you want support, contact me. Now, here’s Dak: Read more »

Getting Unstuck

“Open your new brain” I suggest to audiences and individuals. This means setting aside the rote response “I can’t do this; this won’t work in my situation.” By opening your ‘new brain’ you listen to ideas with the attitude, “I wonder how I can apply this new information?”

We all get stuck now and then. For some of us, it feels like we’ve been stuck in those glue traps set out to catch unwanted mice. And we continue doing the same thing over and over, hoping that today, the result will magically evolve. When it doesn’t it can easily throw us into a maelstrom of emotions.

Here are my suggestions to loosen the grip of the proverbially glue trap and open your new brain:

  • Get creative. I know, hard to manage when feeling stuck. So get up and dance! Call a friend or sit and color. Just do something. Don’t think about it. I have adult coloring books, if you’d like to order, and I also provide excellent suggestions for creatively interacting with your loved ones when giving care in my book.
  • Stop the mind chatter. Focus on someone else. Turn your attention to listening to another person and set your self talk on a shelf. This small act brings a double blessing—that person is truly listened to and you let go of your mind chatter for a bit.
  • Walk outside. In all weather. Look up at the trees. Breathe deeply. Listen for nature’s conversation and let it take over your mind chatter if just for a little time.
  • Use humor. Watch a stand up routine or just listen to people laugh. If nothing else, humor will shift your physiological makeup and automatically make you feel just a little better. What will it hurt?

If there’s any way I can help you get unstuck—either with caregiving issues or aging issues or heck, just living issues, let me know. I’m here to help.

The Law Says Call Yer Ma

How other countries handle family caregiving is often in the news. Especially if it’s shocking…as in the case of China and India. Dak Gustal approaches the issues with his usual flair.

By Dak Gustal

Why would a country want to make a law that says children have to take care of their parents?

I was just reading this article about two giant countries in Asia doing just that. Apparently the children are so negligent, the parents are suing them for weekly phone calls. Can you imagine talking to someone who was only talking to you because the law required it? Read more »

Ew! Nanna and Pappa should not have sex

By Dak Gustal

Oh my! Did you know that sex is such a big deal?

I sure didn’t. I was surprised to find out that people think about and want to have sex even when they have wrinkles and gray hair.

Yeah, I took a look at this article about how people get fired when residents have sex in nursing homes, and also at this one about people that allow and expect it to happen. Read more »

Dying Gone Haywire

“Ask for help” and “Who’s on your team?” are two common phrases you’ll hear me say when it comes to caregiving, aging, or heck, just living. Taking my own advice, I called on my talented brother, Dak Gustal, who will offer fresh, humorous perspectives as an occasional guest blogger here at The Unexpected Caregiver. Please share this and other blogs. 

SteveBy Dak Gustal

The original story is called Woman Headed to Trial for Aiding Father’s Suicide.

That’s not that interesting.

Then it became: Boomers beware when caring for dying parents.
Now you got me.

This is my headline: Boomers! Bam! Pow! Yeah! Beware! Scary Parent! Run!
Perfect.

This has all the elements of a great story. I think there’s redemption coming. Read more »

Three Taboo Subjects to Raise with your Aging Parents

Finances, Mental Health and Sex: Three topics of conversation avoided in the calm times and poorly handled under crisis—especially when a conversation needs to take place between an aging parent and their adult child. Read more »

A new way to handle ‘badly behaved’ older adults

Tase them! This isn’t the first time a nursing home resident has been tased and it won’t be the last. It should cause alarm bells to be clanging in the hearts of everyone caring for an aging loved one. We aren’t given details in the report (I’m waiting for Paul Harvey to fill us in with “the rest of the story”), but it’s very disturbing to think that a professional caregiver felt it necessary to call in outside enforcement.

I’ve been in tough situations with residents. I recall Ann in a dementia care community I managed: she believed herself to be a nurse by day, thought she needed to free fellow residents by night. When our dementia care community’s water pipes sprung a leak and we needed to evacuate residents just after bedtime, Ann seized the opportunity. Read more »

Together We Can

88-year-old Betty finished the 3 1/2 hour rainy-day hike. It wasn’t something she did alone; the group walked along side her. With a walking stick in one hand, her grandson held the other. When the creek was too wide and rocky, our guide lifted Betty safely to the other side.

IMG_2927Even though some in our hiking group may have wanted to climb a peak or move more quickly, our personal desires easily gave way to the group’s goal of completing the hike as a whole. As individuals we may be preoccupied with our individual agendas, but allowing others to interrupt our preoccupations can be a sweet gift. We tune into someone else and we wake up to the present moment.

This is what it can be like to be a family caregiver. If we’re able to set aside our personal wants and tune into another person, it is a great gift to both care receiver and ourselves. When I completed Robert V. Taylor’s 21-Day Reboot, I found myself tuning both inward and also outward per his daily suggestions. When you listen to our radio interview, you will see just how helpful his 21-Day Reboot can be for family caregivers. Instead of being weighed down by daily tasks, embrace Robert’s Day 5 suggestion: “Delight affects how you participate in your own life and the world. Chose to allow yourself to be delighted by something or someone today. Tell another person about your delight.” Read more »

Is Assisted Living a Dangerous Place to Live?

The PBS Frontline special “Life and Death in Assisted Living” has sparked a great deal of chatter on social media. Assisted living (AL) is not regulated like nursing home care (or SNF-skilled nursing facility), but do we want it to be? Regulations tend to put the kibosh on creative offerings.

One of the initial definitions of assisted living was “living with risk.” When I first worked in the industry, folders replaced charts; aides didn’t wear uniforms; and med carts never entered the dining room. Buildings were designed to look like country mansions with grand staircases (that residents were discouraged from using).

Assisted living in 1996 was designed to provide some assistance in a home-like setting. As people have aged in place, AL has become a less-regulated version of a nursing home. While the industry markets these communities as homes, they refer to them as facilities. Who wants to live in a facility?

As for staff being overworked, underpaid, and under-trained, I agree. Years ago my partner and I started our company Age In Motion, Inc. We designed programs to address the issue of assisted living staff that was (still is) underpaid, undervalued, and under-trained. We created a staff training that not only motivated the staff and reminded them of their importance, but also taught them about normal aging, diseases that cause dementia, family dynamics, and activities that engage individuals and groups.

I thought we’d be in demand … that everyone, especially senior housing, would want this training. Sadly, most choose to ignore aging until it happens to someone they love, then the cramming begins. But where do you get the information?

This is why I do what I do and have done what I’ve done. Let’s talk about this thing called aging, engage in understanding what happens to us as we grow older — the ups, the downs, the good, the bad. This is the package. This is why I started The Unexpected Caregiver radio show four years ago and have a mission to syndicate it throughout the US and world.

The conversation is long overdue, but it is not distasteful to have. Aging and taking care of each other is not distasteful. And if we learn about aging, plan for our aging years, research our options, we will have a better understanding of what is to come.

No, assisted living is not dangerous. It is as misunderstood as the journey of aging.

I don’t need training. I know my Mom

What do you do when your mom has Alzheimer’s disease, your father denies it, and your siblings are of no help? Caring for a parent with Alzheimer’s disease has a steep learning curve. Yet may family caregivers feel they “should” be able to handle it—No training needed. You must ask for help. Read what you can get your hands on. Attend support groups. Instead of arguing with someone who has Alzheimer’s disease, use my favorite phrase: “You may be right.” And walk away.

I recently interviewed Pam Brammann, who provides training for family caregivers. She shared with me brain brain images (PET scans). First you see a normal, active brain compared to an Alzheimer’s brain. You see very little activity in the diseased brain. The second set compares a normal infant’s brain to that of someone with late stage Alzheimer’s disease. It becomes clear just why you can’t reason with someone who has Alzheimer’s disease—their brain is working at the level of a 2-year-old.

Normal Brain vs Alzheimer's Brain Late Alzheimer's Brain vs Normal Infant's Brain

As Pam explained in our radio interview, “If a two-year-old runs across the street, you don’t sit that child down and elaborate the dangers of running across a street; the child won’t get it. Same goes for someone with Alzheimer’s disease.” Reasoning with someone who has Alzheimer’s disease or other dementias doesn’t make sense.

Even if you think you know your Mom or Dad, you may not understand how the disease has changed their brain. Getting a little training to better understand the disease and just how you can handle the symptoms (or behaviors) will do wonders to keep you sane.

To Organize or not to Organize. Is that even a question?

Just having packed for a three-week trip to Norway, I am amazed at all the stuff I think I need. And I know I’ve made copies of my passport, driver’s license, and credit cards for previous trips, but couldn’t find them before this trip. I’m sure they’re in a file. Or a pile. Somewhere.

My husband recently went in for a colonoscopy and made it a goal to complete his health care directive. He’ll file his copy with my health care directive and hopefully, if someone needed to find them, they could.

As part of a caregiver focus group, we asked family caregivers what they least expected. Top among the issues had to do with the high cost of care and spending a lot of time tracking down documents. I make reference to gathering financial and legal documents in The Unexpected Caregiver, and recently interviewed Hope Clements with My Legacy Made Easy (Listen to our radio interview here). She and her partner created this product to organize your life’s work and give peace of mind to your family caregivers. They use a three-step process to help you establish and maintain your legacy planner. You walk away with all of your important documents in one place. How cool is that?

When you’re in the emotional throes of giving care to your parents, it feels like a waste of precious time to search high and low for necessary documents. Here’s what I suggest: organize your own “stuff,” then offer to help your parents do the same. Check out www.mylegacymadeeasy.com and get in touch with me if you need help! Once many of the details are in order, you can focus on connecting. What a gift!