My college friend, Stephen Rothman, of The Social Media Soapbox, recently posted this affirmation on his Facebook status:

Come what may, as long as I have the ears to hear the last movement of Mozart’s Jupiter symphony, life will always be worth living.

When I read it, I immediately had to create my own affirmation following his lead.  Here’s mine:

Come what may, as long as I can dance, life will always be worth living.

Come what may, as long as I spend time with my soul mate Jeff, life will always be worth living.

Come what may, as long as Robbie shares his life with me as it unfolds, life will always be worth living.

Come what may, as long as I have wonderful friends to share the ride with, life will always be worth living.

OK, so I got a little carried away.

But it only takes a moment to look around and see the “positives” in our lives and the world around us.  And it’s most important to do this, yet the hardest to do, when life is difficult!  Thanks for the reminder, Steve.

Now it’s your turn to write an affirmation and perhaps inspire others to do the same.  Please share it with us in the comment section below.

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Photo Credit: .Baz’s photostream

My mom has been troubled by bedsores on and off for the past two years.  A bedsore forms, gets worse and then very s-l-o-w-l-y heals (as in taking months to completely close up). She presently has three in various sizes, places and stages of breakdown or healing.

Contrary to what most of us believe, I’ve learned bedsores do not occur as a result of neglect.  In my mom’s situation, her skin breakdown is due to the thinness and fragility of her skin, her weight (she’s only 90 lbs.) and the fact that she can no longer walk. The caregivers at her board & care are all top notch and are constantly battling any signs of skin irritation to keep new bedsores from forming.

The Current Medical Treatment

The worst bedsore is on her coccyx and the doctor ordered her to be in bed 99% of the time now.  The caregivers are vigilant about turning her from one side to the other side every two hours and changing her diaper to keep moistness away from all the sores.  She uses an alternating pressure air mattress which is always moving slightly to massage her skin.  The hospice nurse provides specialized wound care every second or third day. I know medically these are correct steps, because with the attentive wound care and the “staying in bed regime” the sore is not getting worse, and is starting to heal.  For that I am grateful.

So What’s My Dilemma?

Why is this medical treatment bothering me?

Because it is also a quality of life issue.

When she’s in bed 99% of the time, Mom misses out on the social activities that go on in the living room and kitchen of the house.  She can’t partake in musical sing-a-longs or arts & crafts sessions three times a week.  She misses mealtime conversations and visits from other residents’ families.  Even though her ability to speak, participate or interact are limited, I still believe she gets stimulation and enjoyment by being in these social situations.  Or just by viewing the changing indoor “landscape” in front of her eyes. When she’s lying in bed in her room, she’s isolated and misses out on this liveliness, except what I bring her during my visits.

If I knew the medical treatment was just for a few days or even for a few weeks, I could live with it.  But based on how long it has taken previous bedsores to heal, I see her staying in bed for months to come.

A Balancing Act

It’s a matter of balancing her medical needs and keeping her quality of life at a decent level.  It’s a balancing act that I’m not sure we’re winning.  Yes, her bedsores are healing, but at what cost?  It’s frustrating and it makes me sad.

Have you found yourself in a similar caregiving predicament?

How have you dealt with it? Let’s discuss . . .

Here are two videos from YouTube that I came across this week and just loved!

The first one is funny and stars an animal friend who is musically-inclined.

If you have trouble viewing the video above, click here.

This second one is creative and has a wonderful message!

If you have trouble viewing the video above, click here.

To everyone in the TLeC community, have a great weekend!

Exactly one year ago today, I wrote my first post containing a quote by Nehru to inspire family caregivers.

Wow, where has the time gone?!

This community has grown so much in the last year, we’ve “talked” about many topics, and I’ve enjoyed learning from all of you so much!

To mark this one year “anniversary” and because a blog is an online dialogue, I’d like you to write one of your favorite inspiring quotes, poems, song lyrics or stories in the Comment section below.**

What do you read or turn to for comfort or inspiration when you’re feeling down and need a lift?

Turnabout is fair play . . . . yes?

Thank you for sharing with me and our entire community — today and every day you take the time to read and comment my blog!  I am deeply grateful.

**If you’d like instructions on how to leave a comment, click here.

This is Part 3 in a 3-part series.  Please click here to read Part 1 which contains the background ideas these lessons are built on. Also read my brief “Word of Warning” in Part 2 to keep from “shoulding” all over yourself and for a prior lesson in the language of dementia.

I hope you are starting to get the hang of communicating more effectively with your aging parents who have memory loss, dementia or Alzheimer’s disease (AD).  The very first step is becoming aware of what words we choose and how these words can help us reach the goal of making daily life with them as stress-free as possible.

Have you been practicing this “new language” in conversations with your Golden Oldies?  Can you see why we’ve identified some things as Don’ts because the words used can trigger anxiety and/or arguments with our care recipients? Are you starting to apply some of the Do’s that encourage peaceful and more fruitful verbal exchanges?

Remember, learning a new language takes time and repeated practice so be patient with yourselves.  Now on to a few more Do’s and Don’ts in this lesson.

Don’t Reason or Argue

It is hard to break our “normal” patterns of communication.  When someone asks you a question, you answer it logically — right?

Well, not when it comes from a memory-impaired individual.  Here’s an example:

Golden Oldie with AD: “What doctor’s appointment? I don’t need to see the doctor.  There’s nothing wrong with me.”

One response:  “You’ve been seeing Dr. So-and-So every three months for the past year. It’s on the calendar and I told you about it yesterday and this morning.”

Instant Replay:  “It’s just a regular checkup.  I’m sorry if I forgot to tell you.”

Some Do’s illustrated by the above exchange are:

• Give short, one sentence explanations.

• Accept the blame when something’s wrong in the memory-impaired person’s mind, even if it’s a fantasy.

OK, it’s true confession time again.  Here’s a conversation I had with my mom when she was in the earlier stages of AD:

Mom:  “I can’t find my purse.  Someone must have stolen it from my apartment.”

My reply:  “What?  Don’t be ridiculous, Mom!  No one has burglarized your home. You must have misplaced your purse.  Let’s look for it.”

Instant Replay:  “That’s a scary thought, Mom.  I’ll make sure the alarm is working properly.  Would you help me fold the laundry?”

The Instant Replay response (if I only knew then what I know now) is preferable because I:

• Respond to feelings (fear or anxiety), rather than the words.

• Am being reassuring and patient.

• Distract them to a different subject or activity.

Simplify, Simplify, Simplify

Open-ended questions are very hard for a memory-impaired person to process as well as reply to, and can create anxiety in them. For example:

Son:  “Dad, where should we go today?”

No response.

It is wiser to give them a simple choice between two things, or even direct their choice, such as:

Instant Replay #1:  “Dad, should we go to the park or the library today?”  OR

Instant Replay #2:  “Dad, it’s so warm and sunny outside, let’s go get some ice cream.”

Allow lots of time for comprehension; then triple it in all conversations.

Try to repeat instructions or sentences in exactly the same way.  Even changing one or two words can confuse a person with dementia.

Spouse: “Please drink your milk. (pause) You need to drink all your milk.”

Instant Replay: “Please drink your milk. (pause) Please drink your milk.”

Keep in Mind

Our goal is to keep our dementia care recipients as calm and anxiety-free as possible every day. This will help to increase their quality of life tremendously.

Memory loss progresses daily, so please do not take it personally if your care recipient speaks hurtful words to you.  Try putting yourself in their place and imagine how afraid you would feel.

Practice compassion and generosity in your words and actions daily.

How are you progressing in mastering this new language?

If you have challenges you need help with or have examples of verbal exchanges you’d like to share, please leave them in the comment section below and I’ll be sure to reply.

Outside Resource:

Compassionate Communication with the Memory Impaired by Liz Ayres

“I am the Tax Man . . .”

Under the Freedom of Information Act, a man with a small business sent a request to the IRS asking if they had a file on him. The IRS wrote back, “There is now.”

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After reading a nursery rhyme to his child, an accountant says, “No, son. It wouldn’t be tax deductible when Little Bo Peep loses her sheep. But I like your thinking.”

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Ever wonder why the IRS calls it Form 1040?

Because for every $50 that you earn, you get $10 and they get $40.

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The stockbroker received notice from the IRS that he was being audited. He showed up at the appointed time and place with all his financial records, then sat for what seemed like hours as the accountant poured over them.

Finally the IRS agent looked up and commented, “You must have been a tremendous fan of Sir Arthur Conan Doyle.”

“Why would you say that?” wondered the broker.

“Because you’ve made more brilliant deductions on your last three returns than Sherlock Holmes made in his entire career.”

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“The Eiffel Tower is the Empire State Building after taxes.”  ~ Anonymous

“The hardest thing in the world to understand is the income tax.”  ~ Albert Einstein

“I am proud to be paying taxes in the United States. The only thing is – I could be just as proud for half the money.” ~ Arthur Godfrey

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To Everyone in the TLeC community, have a fabulous weekend!

Photo Credit:  Tracy O’s photostream

Smiles for You

Smiling is infectious; you catch it like the flu,

When someone smiled at me today, I started smiling too.

I passed around the corner and someone saw my grin

When he smiled I realized I’d passed it on to him.

I thought about that smile then I realized its worth,

A single smile, just like mine, could travel round the earth.

So, if you feel a smile begin, don’t leave it undetected

Let’s start an epidemic quick, and get the world infected!

~ Anonymous

Photo Credit: HAMED MASOUMI’s photostream

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Smile

Lyrics by John Turner and Geoffery Parsons – 1954
Music by Charles Chaplin – for silent movie “Modern Times” 1936

Smile though your heart is aching,
Smile even though it’s breaking,
Though there are clouds in the sky, you’ll get by.
If you smile through your fears and sorrows,
Smile and maybe tomorrow,
You’ll see the sun come shining through for you.

Light up your face with gladness,
Hide every trace of sadness.
Although a tear may be ever so near,
That’s the time you must keep on trying.
Smile, what’s the use of crying?
You’ll find that life is still worthwhile,
If you just smile.

Photo Credit:  Lucas Jans’ photostream

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Smiles are powerful.  Here are a few questions for you to ponder.  I’d love it if you would share your thoughts in the Comment section below. If you want to learn how to comment click here.

As family caregivers, sometimes it’s very hard to keep smiling.  Do you do so even when you’re “down in the dumps?”

Do you find smiling at people around you in your daily life helps cheer you up?

How does your care recipient respond to your smiles?

How do you feel when your care recipient smiles at you?

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Everyone needs smiles.  Please pass this along to someone you know who can use a smile today!

I have been away for a few weeks because my dear Aunt Rose passed away on March 28th, 2009 at age 95 in her home in New York City.  Uncle Arthur, her husband and soul mate, predeceased her in 1994.  While I was away for only four days, the trip took me back decades in our family history and I’ve been steeped in this “time trip” since my return.  They were an extraordinary couple and I’d like to share some thoughts about them with you.

As a youngster, I thought Rose and Arthur were quite Bohemian.

Rose was my mom’s sister, 4 years younger than she.  Some of my favorite childhood memories are when Rose and Arthur visited our home on Long Island.  They’d take the train out from New York City, we would meet them at the train station and walk back to our house.   I thought it so unusual that they didn’t drive a car.

Every time I would see Uncle Arthur, he’d say to me, “Linda, say Happy Birthday, Uncle Arthur!”  I would usually giggle and say “Today’s not your birthday!”  Indeed, I knew exactly when his birthday was. Then he would smile a Cheshire grin and reply, “Every day’s my birthday.”  What a powerful life lesson he was teaching me — and before I could even understand it.

Uncle Arthur could also wiggle his ears — not using his hands!  That would have me in gales of laughter as I’d demand, “Do it again!  Again!.”  They almost always came to spend Christmas Day with us and would bring a box of ribbon candy for me as a treat.  (I still don’t know if that was the only time of year it was available in NYC or if that’s just when they brought it.)   In the summer, he would enjoy sunbathing in our backyard during their visits — Uncle Arthur was a huge sun worshiper his entire life.  He always wore bikini bathing suits — even before Speedos were in vogue for men to wear as far as I know. Aunt Rose and my mom would enjoy the garden while Uncle Arthur soaked up rays.

They were both lifelong New Yorkers, living in Manhattan all of their lives.  For many years they lived in a very tiny studio apartment in Greenwich village and then in the 1980’s upgraded to a one bedroom cooperative apartment in the same neighborhood, where they lived the remainder of their years.  They didn’t own a television set until some time after they moved, which was highly unusual during the great Age of Television.

Both of these homes were decorated with unusual plates, statues, and other beautiful artwork from their travels around the world.  While they both had successful careers in accounting and office management, their real passion was traveling.  One cruise alone took them on a 3 month journey around the world, and I understand their travels took them around the world a total of seven times!  Cruising was their pleasure (the Sagafjord was their favorite ship), and it was only in later years they deigned to fly, and I suspect it was because it was the only way to reach destinations they still wanted to see.

Uncle Arthur made silver jewelry as a hobby.  Aunt Rose was a jewelry maker and dress designer extraordinaire in her free time, and sewed beautiful evening dresses, especially sari’s, to wear to the many Captain’s Dinners they were invited to while cruising.  He loved opera, and they had season tickets to the Metropolitan Opera for many years.  When I was in high school, Aunt Rose stayed home one evening and I was Uncle Arthur’s escort to the opera.  He had me listen to the music in advance and told me the story so I could follow it.  I totally enjoyed the Metropolitan experience that evening, but sheepishly admitted to him later on that opera wasn’t my favorite musical genre.

As I grew older, I realized that Rose and Arthur were not Bohemian at all, but actually conservative citizens.

To illustrate I’ll share one memorable evening we had together in San Francisco.  They had been on a cruise that ended there, and a friend and I met them at the pier, took them to their hotel and had dinner with them that evening.  My friend, young and idealistic in his 20’s, was dissing our country for something or other, and Uncle Arthur went on a rant (he was nearly yelling at us) about how much poverty, disease and horrible things they’d seen in so many other countries,  the United States was the best country in the world and we’d better not ever forget that fact!  Yikes! I haven’t forgotten it, Uncle Arthur.

Dancing was another passion of theirs (which I’m happy to say I’ve inherited) and they were excellent at it.  Aunt Rose told me how the ladies would line up to dance with Arthur, and she was proud to say they were more skilled than some of the dance teachers on the ships.  Another favorite moment in my mind’s eye is of them dancing together at my wedding, he in a white dinner jacket, she in a pink brocade evening dress and matching jacket.

While the photograph above doesn’t show it, Aunt Rose wore her hair in a beautiful, perfectly formed bun near the top of her head for most of her life.  After Uncle Arthur died, she cut her hair short and had it permed.  I never realized she wore it that way for him all of those years!  She also loved going to museums and reading the Wall Street Journal daily.

Aunt Rose was Uncle Arthur’s nurse during his battle with throat cancer, which he lost in 1994.  After that she didn’t travel to exotic places any longer, but did make trips to Florida and California to visit her two brothers, her sister and their families.  I believe her last trip was to attend my son’s bar mitzvah in 2002.  How very lucky we were to have her there!

Their Legacy to Me

Rose and Arthur instilled in me a love of travel, art and dancing.  I will continue incorporating these three things in my life, and our son’s as well.

Their relationship was a true romance story, and their ever-lasting love and devotion is a wonderful model for everyone to aspire to. (So far so good, as my husband and I are celebrating our 25th wedding anniversary tomorrow.)

And I promise to live every day as if it’s my birthday!

I’ll close by signing off the same way I always would in my letters to them –

Aunt Rose and Uncle Arthur, I love you and miss you TONS!!!!!!!!!!!!!!

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Photo Credit: E. Antonovsky, N.Y. — circa 1940

Hello TLeC Community,

I haven’t been able to post since the end of March, but I don’t want you to worry about me.  I have been out of town on a personal family matter that I’ll be writing about more next week.  I’m back home now, but need some time to catch up on things, both off line and on line, since I had to leave in a hurry.  I will be back with lots of new articles, inspirational quotes and humor next week.

To Keep You Busy This Week . .  .

In my absence Tender Loving Eldercare has been featured in the inaugural edition of the Eldercare ABC Blog Carnival, which is described as “a collection of blog entries from some of the best elder help bloggers from around the Internet.”  I’m flattered to be included there!  Click here to find many wonderful articles to read and new blogs to explore on topics for family caregivers. I know you won’t be disappointed.

I’m looking forward to being back with lots of new material for you all next week!  Thanks for your patience and understanding.