[I wrote the following essay sometime last year, well before Covid 19 changed all of our lives. I haven’t been able to visit any eldercare facilities and sing with my sweet dementia friends in over six months. And the whole idea of being sick, and especially, being healthy, has taken on a much deeper meaning for me. But I decided to post this anyway if only to give myself a look back at the good old days when sentiments like mine could perhaps seem novel and vaguely humorous. So with apologies to anyone who may be offended, I offer my pre-pandemic musings.]

I love being sick. There. I said it. Now, let me immediately qualify that by saying I’m not talking about being “sick” sick. I have nothing but compassion for people who are really, truly sick with painful, debilitating, scary, and life- or quality of life-threatening illnesses. And I’m enormously grateful that I’m not – and never have been – that kind of sick. I’m talking about this cold I have right now.

It’s just a cold. But it’s a bad cold. The worst in my admittedly failing memory. I’ve been sneezing, blowing, and coughing up all kinds of yukky stuff. My head hurts, I ache, I’m weak and I just generally feel like crap. And I love it.

I have loved being sick – and again I stress, not really sick – since I was a child. And small wonder. Being sick in our house was kind of like being a rock star! You got to lie around, watch TV during the day, eat in bed – granted not everything you wanted, but who doesn’t love chicken noodle soup and saltine crackers served on a tray? But the two best things about being sick back then were that you got lots of attention and you didn’t have to go to school.

And those are still the two best things. All I have to do is answer the phone or call someone and the first thing I hear is, “You sound terrible. Are you sick???” To which I can bravely reply, “Oh, yeah. I have a bad cold, but it’s no big deal. I sound worse than I feel.” Of course, they don’t buy that for a minute! Of course, I feel awful. And even if I sound worse than I feel, they just said I sound terrible, so I must feel pretty darn bad! Plus, I get points for being tough and not being a whiner. It’s a no-lose situation.

And then there’s the no-school part. As it happens, my job is singing to dementia patients in nursing homes. So there is no way I could go to work. I mean, first of all, when you have a cold, your throat and vocal cords are all inflamed and out of whack, so it’s hard to talk, much less sing on key. And then, no person of good conscience would waltz into a nursing home full of very old and vulnerable people carrying the kind of germs that are an inconvenience for people like me but could be life-threatening for the dear residents I spend time with. So not going to work isn’t just a wise precaution, it’s a genuine act of love and compassion.

Again, don’t get me wrong. I love my job! Getting to sing and have very personal, intimate interactions with people who are in the most difficult and defenseless time of their lives is precious and I wouldn’t trade it for anything. But still, a job is a job. And having a really good and – some might say, honorable – reason for not going to work is kind of a gift.

But besides getting attention and getting to lie around the house guilt-free, there’s another reason. And this is the one that is the most difficult to admit because it could sound like a slap in the face to those aforementioned really, truly sick people: I like the way being sick feels.

I like the novelty of feeling out of my usual state. I like not sounding like myself. I even like the headaches and achy joints and coughing fits. Of course, this is largely because I know it will pass and I’ll get my old healthy body back in a week or so.

And maybe that’s why I enjoy it so much. Because it reminds me of the gift I’ve been given of a mostly-healthy, mostly-strong body that responds to my unthinking and unnoticed commands to breathe, sleep, speak or sing without missing a beat. I like being sick because I’m mostly not. And being sick allows me to appreciate – if only for a short time – the incredible gift of good health that I’ve been given.

But now if you’ll excuse me, I need to go blow my nose.

One of my dementia clients is very, very sad.  Alice is 100 years old.  She’s not quite five feet tall, and has always been a very active, energetic person.  Over the years I’ve been visiting with her, she’s told me repeatedly that she weighed just 2 ½ pounds when she was born, surviving against all odds.  She went to work immediately after graduating from high school, and moved from the small town where she was born to the “big city” of Austin as soon as she could.  She worked for 26 years at the same bank, holding a variety of jobs, from teller to head of the safe deposit department.  Her description of trying to control the gigantic vault door, especially given her diminutive stature, is both vivid and delightfully amusing.

She married the love of her life and best friend, and together they raised a fine son who calls her every night to check in and make sure she’s okay.  She and her husband spent wonderful times together camping and fishing at their little cabin on the lake, and later driving all over the country in their motor home.  She told me about the time she was forced to surrender a precious bag of homegrown tomatoes from a roadside stand when they crossed a state line that didn’t allow importation of produce.  She “learned my lesson and hid my tomatoes after that!”  She has fond and happy memories of those times, and dearly misses her husband who passed away several years ago.

Alice’s hobbies included knitting, crocheting, playing cards and reading, among other things.  Later in life she joined a women’s tap dancing troupe, and “just loved to dance!”  She also loves to walk.  Supported by her walker, she parades up and down the hallway of her residence, and if someone is with her, she can go outside to stroll around the garden “and listen to the birds.”

But sadly, in addition to dementia and the hearing loss that’s typical of people her age, Alice has also lost virtually all of her vision.  Consequently, most of the activities she has always enjoyed are no longer available to her.  And her advanced dementia pretty much rules out learning anything new.  (Somewhat ironically, the activity I can offer her – music – is not something that has much appeal for her.)

So Alice is bored.  This vibrant, pint-sized powerhouse is horribly, painfully bored, which has put her in a pretty dark state of mind that makes it hard for her even to enjoy conversations that used to delight her. She receives excellent care in a wonderful facility, and while I’m not privy to her medical treatment, I feel sure that she’s being given whatever pharmaceutical intervention is appropriate.  But that doesn’t relieve her boredom.  Lately her refrain is, “I wish there was something I could do!”

Therein lies the rub.  And it’s something I’m seeing more, the deeper I move into the world of dementia- and elder-care.  That is, people who have been “doing” all their lives, can no longer “do”.  Pretty much all that’s left is to “be” which, if you’ve ever really tried it, isn’t as easy as it sounds.  (To read about my own challenges with this, check out my post from a few years back, Do-Be-Do-Be-Do.)

But as I struggle to offer something meaningful to Alice and people like her, I take comfort in the advice of a dear friend who is a professional therapist and also one of the wisest people I’ve ever known:  If all she can do is to “be”, then “be” with her.  So I “be” with Alice in her boredom, in her loss, in her sadness.  Because sometimes “being” is really all anyone can do.

Addendum (Aug. 4, 2016):  I just came back from visiting with Alice and she was in the best mood!  Happier than she’s been in about six weeks!  She was chatty, laughing, and very glad to spend time with me, sharing her favorite memories.  I don’t know if some meds kicked in or what, but I am thrilled and had to share the good news!

Addendum (Sept. 12, 2016):  Days after the addendum above, Alice slipped back into despair, sobbing almost continuously and saying she wanted to die and “get out of here”.  During our weekly visits, all I could do was hold her hand, remind her she was loved, and continue to “be” with her. This morning at midnight her prayers were answered and she passed away.  I hope she has gone to join her beloved husband and continue their adventures!  I will miss her terribly, but my heart is soaring at her release.

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This may be disturbing.  When I tell you Ted’s story, you might think, ‘Oh, that’s just so sad and tragic, I don’t want to hear about it.’  To which my response is, ‘Get over it.’  Yes, it’s sad and tragic when people lose their memories…or their minds, or their sight, or their mobility.  But it’s a reality of life.  So let’s talk about how to handle it, and how to help.

Ted is one of my favorite people.  He’s bright, funny, and very, very smart.  He also happens to have dementia.  I’ve mentioned before that my Musical Memories sessions are “musical conversations” and that some people are more interested in the conversation part.  Well, that’s Ted.  Not that he doesn’t occasionally enjoy bringing his full baritone to a song or two, but mostly he likes the give and take of a good verbal exchange.  And he likes to think.

I realized early on that although he rarely seems to know where he is – sometimes we’re on a train, sometimes in a hotel, once we were in some sort of swamp surrounded by boats – he knows how to evaluate, analyze and communicate.  It’s what I’m sure made him highly successful in his military and industry careers; it’s something he’s proud of and clearly gives him great pleasure.

Like many dementia patients, Ted can no longer do most of the things he enjoys.  He can’t play golf or bowl because he’s unsteady on his feet and can’t see well.  He can’t read or watch a movie because he can’t follow and retain the storyline.  And believe me, you will not see Ted at bingo or arts and crafts.  He’s also a bit of an introvert, so he doesn’t seem to seek out groups of people to socialize.  But he likes one-on-one conversations that allow him to stretch and exercise his considerable brainpower, despite the fact that what he’s discussing may not, in fact, be “real”.

So when we get together, I just ask him what’s going on.  He’ll immediately start describing what he believes to be his current reality.  I never try to convince him that, no, we aren’t on a train.  Instead, I simply follow his train of thought, as it were, and let him lead us in an intelligent conversation about how we’ll be able to get off at the right stop and be sure we get back on again when we’re ready to leave.  In the “swamp”, Ted had some fascinating insights about what kinds of crops grow best in that environment and why.  These aren’t memories; this is real-time thinking.  And for Ted, it’s fun.

I should note that I always make sure he isn’t feeling frightened.  And if he seems to be spiraling down into a dark or depressed place, I’ll do some redirecting to help break that descent.  (This is where a songs or two can come in handy.)  One time he was very worried that his military supervisors wouldn’t be able to locate him because all his “paperwork” lists his name as Edward, but he’s been introducing himself as Ted.  So I took out a pad of paper and  very officiously wrote down his full name and birth date, and assured him I would see that the correct information got to the proper authorities.  And then he was fine.

Ted is a thinking man for whom intelligent, thoughtful conversation is a favorite pastime – one of the few that are still available to him.

So here’s my thought:  If you know or love someone with dementia, someone who is a thinker and has always enjoyed intelligent conversation, engage them.  Let them talk and follow their lead.  Converse, but don’t challenge or correct their perceptions of reality.  Banter and joke with them.  Ask questions, but don’t dig for facts they may not remember, like how old they are or how many children they have.  They may not recall the details of their lives, but the person you know is still there, thinking.

And if you are a thinker and enjoy intelligent conversation, you might think about sharing this with your loved ones now.  Because you never know.

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