I Love You Truly

Almira peers at me from my iPad with a familiar and perpetual frown.  I know Almira.  I know she is not angry or even sad, but I do wonder what sorrows have knitted her grey eyebrows into such deep lines.  Her hair is permed in the tight curls of so many in the nursing home, framing her face in a stern halo.  Almira glares at me like an iron-willed queen from a somber Renaissance painting.  When her mouth releases a sliver of saliva, she carefully and slowly wipes her face with the bib she wears.

“How are you?” she asks in a garbled voice, as if her mouth is full of marbles.  Almira is polite as usual, and I remind myself that just because she doesn’t look very happy, she is still glad to see me and is enjoying the music.  “You look very pretty,” she adds, approving of my blouse dotted with colorful Christmas lights, purchased last year from WalMart.  I never thought I’d be wearing such an outfit—from WalMart of all places—but I love that Almira and the other elders enjoy it so much.

Part of moving towards elderhood myself is shedding former self-conceptions of what kind of person I am, including what kind of clothes I wear.  The elders show me the way.  If you have to wear a bib, you have to wear a bib.  It’s not really a big deal.  If I have to wear “tacky” clothes and string Christmas lights behind me to light up their lives, it’s not a big deal either.  In fact, it is fun.

It is December of 2020, a particularly harsh holiday season for everybody in the world, but especially for elders in nursing homes who have been shut away from their loved ones for so many months.  I am still not able to see them in person, but I sing Christmas songs for them from my iPad.  We are all weary of the pandemic, but the music cuts through, a candle flame dancing in the darkest time of the darkest year of most of our lives.

Almira enjoys the songs and sometimes sings along with some of them such as Silent Night and Jingle Bells.  But there is one special song that Almira always wants to hear, and the only one she ever requests.  “I Love You Truly!” she demands in her warbly voice.  I have learned from past conversations that this song was played at Almira’s wedding.  Almira can no longer tell me her husband’s name, but the song is as important to her as the dog-eared devotional she keeps at her bedside.

When I started the musical elder work five years ago, I met Almira on my first day.  She was sitting in her wheelchair in the hallway outside her door.  Just like today, she called out imperiously, “I love you truly!”  For the first few years, Almira was not on my one-to-one list of people to visit with music therapy.  I would pass her in the hall and tell her, “I promise, I will learn that song for you someday!”  But since she wasn’t on my official list I kept forgetting and putting it off.

Until one day when I opened a banjo case and found a “message” from my father inside.

My father had many stringed instruments, most of which came to me after my mother moved from her big house.  One of them was a tenor banjo, which Dad used when he played jazzier songs.  It’s what I used to call his “fast banjo” when I was very little, probably the banjo he was playing when I was still in my mother’s womb.  I had not opened the banjo when I first got it, but I finally decided to check it out.

When I removed the banjo from the case, I saw a torn piece of notebook paper lying on the deep blue velvet bed with some writing on it.  I picked it up to examine it.  It was in my father’s distinctive scrawly handwriting and was simply this: “I love you truely.”  (He was never a great speller!)

My father had been gone for years and had probably written this down years before that.  I knew that this scrap of paper was probably in the case because Dad was reminding himself to learn the song—I often write songs I want to remember to learn on random bits of paper too.   But still, I felt as if it was a precious and powerful message left just for me to find, a message from my father.  I knelt on the floor beside the banjo case and sobbed, feeling my father’s love wrap around me from the Great Beyond.  In my head I could hear him laughing and calling me “Little Nell,” one of his pet names for me.

That very day, I learned “I Love You Truly” and soon began singing it to Almira, who had been requesting it so persistently for years.

Today, I think of that scrap of paper as Almira once again requests her favorite song.  Love.  A universal expression of truth, a human truth.  Love is what it is all about in our short existence:  loving truly, loving deeply, loving for real.  And love leads to joy, the sacred emotional connection we seek to find in this time of year when so much is so gloomy.

Seeing that little frown still engraved on Almira’s face, I decide to try something new with her before I play her favorite song.  I tell her I have a special tool I keep in my pocket that helps me feel better.  I show her a peace sign, and then I turn my hand around and put my two fingers on each corner of my lips, stretching it up to a smile.  I tell her that sometimes when I feel sad, I SMILE and it instantly makes me feel better.  (True!  A trick I learned from the Barefoot Sensei, Mick Dodge.)

Almira breaks into a huge smile and her face instantly transforms.  I realize I have never seen her smile before!  The years drop off and I see the young Almira, full of hope and anticipation.  She is beautiful when she smiles, and I tell her so.  She turns her smiling face up to the aide standing behind her and gets more encouragement.  Almira and I sing “I Love You Truly” together.  When we are finished, I remind her of the power of the smile again.  For the first time since we met, Almira leaves me with a smile on her face.

I probably will never know more about Almira’s life than what I can read on her face.  But she is human, and her life is not over.  She can still change.  She remembers love.  She finds joy in her own body simply by smiling at another person.

It is almost the winter Solstice, the longest night of the year. I am warmed by memories of my father, and the beauty of Almira’s smile.  My flame burns brightly.

 

 

Screen Love: Tips for Videochatting with your Loved One in a Nursing Home During the Great Separation

Mother’s Day Rose by Brian Castillo

Since March 12, 2020, I have been playing music and singing via my phone with residents at the Panorama Convalescent and Rehabilitation Center (C&R) in Olympia Washington.  I started the day after this skilled nursing facility (nursing home) closed their doors to all visitors to protect the residents from COVID-19.  The Panorama C&R is just 70 miles from the first US outbreak of this deadly virus in another nursing home in Kirkland Washington where so many deaths have occurred.  These folks are among the most vulnerable.

I have been doing one-to-one work at the C&R for a few years now, and I have loved these “private concerts” as one resident dubbed them.  In the two weeks that I have shifted abruptly to working from my living room and a screen, I have learned some tips I want to pass on if your loved one is also in a facility where you cannot visit him or her.  Most of the residents at the Panorama C&R do not have their own cell phones, so the administration must help facilitate this process.

No, videochatting is not as good as a visit in person.  But it’s still pretty awesome that we have this technology during such a difficult time.   Please try to use it–I promise, your loved one will appreciate it so much.  Nursing homes may not be open to visitors for months yet, so finding a way to connect is critical for their well-being.   Yes, you can make an ordinary phone call, but videochatting is simply better, especially for your loved one who misses seeing you.  I hope these are helpful. 

#1 Create Agreement with the Facility

There are technical issues to be solved, but they are all solvable. If your loved one is in a facility, the administration should be able to find a way for you to see and hear each other.  Be polite but persistent, keep asking until they come up with a plan.  By now (March 28, 2020), many facilities in my area are finding ways to connect residents with loved ones and a screen. 

#2 You CAN figure it out!

If you have never videoconferenced yourself and are intimidated by the idea of learning a new technical skill, just know that you can do it.  My 91-year-old mother figured out Zoom.   Mom is really patient and diligent, so pull out some of those qualities in yourself.  Get help from a younger relative to talk you through it. 

#3 You will probably need help from the staff.

If you are already connected with your loved one through apps on your phones such as FaceTime, that is great–use them as often as possible!  But many residents in nursing homes do not have their own cell phones. 

Especially if your loved one has dementia or if he or she is too elderly to figure out the technology, you will need staff assistance. Remember to be patient and kind with the staff.  They are overwhelmed and frightened themselves at this time.  They have to try to provide this kind of valuable service to each resident, all who have  anxious family members.  Remember, staffers are in danger themselves by working in a health care facility.  Don’t make their lives harder by dumping your fears and feelings of frustration on them.

#4:  Pizza helps everything.

Speaking of staff, if you haven’t lost your income and can afford it, buy them a pizza. It lets them know that you appreciate the extra care they are bringing to your loved one when you cannot be there.  The staff at nursing homes are relatively low-paid workers, so a free lunch is more than a token gesture.  Do it every week if you can!

#5:  Which program/technology?

I have found that FaceTime with an I-phone on my end and an I-pad on their end to get the best results. The signal stays clear, and the resident has a large enough screen to enjoy the experience.  It is likely the same with other cell phone video chat technology.  Cell phones use the cell phone networks rather than the internet and it seems to work better (so far). 

But those options may not be available.  You will have to see what the facility is using.  When I have used my computer rather than phone, Zoom seems to work a bit better than Skype in my limited experiments.  There are many other programs I have not tried.

#6:  Keep on the sunny side.

Try to be in as good a space as possible before you start the call.  We’re all freaked out right now, so take a deep breath and “smile though your heart is aching,” as the old song goes. Sometimes when we pretend to be happy, we actually can generate happiness.  It is also healing for you to focus your attention on giving rather than fear.

#7:  Love the camera!

If you have videoconferenced before, you know that the only way the other person feels like you are looking into her eyes is for you to look into the camera.  That means that most of the time you don’t look at her on your screen.  You can glance down here and there, but keep your focus diligently on the small dot of your camera.  You have to pretend to be looking into the eyes of your loved one, which is a bit weird and a bit hard to do for long. 

Note: this discipline is not important or expected in business meetings, but it is critical for your loved one to have a good experience, and to feel connected.

8:  Really?  No bingo, no happy hour?

Ask your loved one how he is feeling, to begin with.  Listen, emphasize.  She is probably pretty bummed out about the situation, and she may be angry too.  Your loved one cannot see you, and he also cannot see his friends in the facility.  The dining room is closed and everyone must eat their meals alone in their rooms. They can’t play bingo, see musical events, go to worship services or participate in any number of daily activities that connect them with others and break up the monotony that is in the best of times part of living in a nursing home.

Tell her it’s so good to see her…remembering to keep that smile on your face.  Don’t worry if it feels fake, SMILE!  It will feel 100% real when she smiles back and your heart turns over.  You can tell him that you are sad you can’t be there, but so happy that you can see him and hear his voice.

9. Way better than nothing

With almost all people that I had met with before the Great Separation, the musical calls are helpful and bring good vibes and comfort, laughs and smiles. It has honestly surprised me how uplifting these sessions have turned out to be.

Even more surprising, I have had rich and lovely connections with elders I have never met, especially those without dementia. So don’t be discouraged by thinking this technology cannot be the same as seeing your loved one in person. No, it is not the same, but in truth it is far, far“better than nothing.”

10:  Facetime/Skyping with dementia residents.

Some with more advanced dementia may not be able to comprehend what is happening or respond to you. Everyone is different, so you can only try. But do try more than once if it seems hard to connect. 

One man who always twinkled and smiled when I saw him in person seemed to think I was just the TV when we FaceTimed.  He stared at the screen and would not respond no matter what I said or did.  Then we tried it on another day and I got some smiles with the tunes.

Many others with early or moderate dementia might be confused by what is happening, but can easily get to a place of enjoying it and conversing, singing and laughing and joking, just as if you were there.

11:  Send a hug.

If it is appropriate, give “virtual hugs” by hugging your own shoulders and saying, “I’m hugging you right now!” Just yesterday I did this with a woman named Alice who lives in the memory care unit. Alice gave a huge smile, hugged her own shoulders and said, “I can feel it!”  Blowing kisses is fun too.

12.  I love your sweater!

Talk about what you can see and invite them to see your space.  I always say, “welcome to my living room!”  Sometimes I take the camera around and give them a tour of my house, or show them what it looks like outside. For folks who have never used Facetime or Skype, this can be really fun.

13. The beauty of a human face.

After consulting with staff, I have so far been putting the camera on just my face. I may in the future change the angle so they can see the guitar, depending on the person. Some people really like to study a guitar player. (My dad would have been one of those!)  But there is nothing like a beloved face, as close up as possible, to cheer up your loved one.

14. Set the stage.

Pay attention to the lighting. (There are plenty of tips out there in the past few weeks about this, check them out too.) Take the time to work on this as if you were a professional!  Your loved one is worth it, and they will unconsciously feel the difference and respond more if it looks pleasing.  A diffused light on your face works best, avoid super bright spots and shadows.  Spend some time finding or making a good background.  Something with a simple texture is great.  I have cedar walls and a barn ceiling, that works well.

15. Gussy up!

Get out of your PJs!  Wear bright colors and take the time to feel good about how you look, putting on makeup or styling your hair, wearing a hat or a favorite scarf. Put on a happy face  as if you were taking your loved one out to a special lunch. I guarantee it will be uplifting for your loved one to see you looking good.

16.  Music to their ears.

Best to be in a room that has furniture or other sound-catchers so you don’t sound hollow or echo-y. We live in a recording studio, so it’s easy for me.  Try to troubleshoot the acoustics with a friend before the videochat.  Again—sound quality is a detail most of us don’t consciously realize affects our perception, but please trust me on this:  good acoustics make for good connections.  Think of some of the news interviews you have seen over the past few weeks in someone’s laundry room that just sound terrible.  It’s hard to keep paying attention.

17.  Consider sharing music.

I chat with the residents a bit to establish rapport, but my main focus is to choose songs that are appropriate for the moment and sing them—all looking at that camera, all with a smile, moving as much as possible. If you sing, you can try this too. You also might try playing recorded music they love, and suggesting they sing with it.  (However, see #18 below.) Just make sure that the sound source is close enough to your microphone if you try this.   Singing is a helluva lot easier than trying to talk when using these programs, and more calming and reassuring for your loved one.  It gets you off the negatives and into some joyful moments.

18:  Double negative reality inversion.

There is a problem with the delay of sound when using videoconferencing when you try to sing together. If your loved one wants to sing with you, someone on that end will need to you will need to turn down the volume on your device while the singing is happening and then turn it back on during the talking. You won’t hear your loved one during the song,  but there won’t be a delay problem on either end. 

This is an unsolvable problem using cell phones or the internet.  With folks that just want to listen to the music, it’s easier.

19: The digital touch is not the human touch.

While this kind of connection really is far “better than nothing,” if you follow all these tips it may feel better for your loved one than for you. I have found myself to be totally drained after two hours of working this way with folks. 

I couldn’t understand it at first.  I finally realized it is because I don’t have the soul nourishment of looking into their eyes and connecting.  I don’t have the physical nourishment of holding their hands.  That real and human feedback is missing for me now, even though I know that I am helping them. 

This is why it is so important to look into the camera when talking or singing to them—your loved one will get more of a feeling of connection. But your feeling of connection will be somewhat sacrificed.  I had no idea how important those simple human connections were until I shifted from working in person to working via screen.  So be sure to do what you need to do to care for yourself.

20.  Bye for now! 

Make sure you tell your loved one that you love him and miss him, using the language that works best for your relationship.  Tell her you’ll see her again as soon as you can.  Suggest some little positive future action, such as saying hello to a favorite nurse from you, or telling another family member about a story you shared.

 

 

I Pray

New recording!  This song is an adaptation of Carol Snyder Halberstadt’s beautiful poem, “I Pray.”  Please click on the link to listen and read more.

I Pray

Song adaption of the poem “ I Pray” by Carol Snyder Halberstad,
published in JAMA. 2018;320(19):2044.
©2018 American Medical Association. Used with Permission.

Music and Alzheimer’s: Love Matters the Most

Winter Oak by Adam Wolpert

New article!  Ten Things to Remember When Your Loved One has Alzheimer’s

Do you have a loved one with Alzheimer’s?  I know it can be a tough journey.  As I have been working with music and people with memory loss for the  past three years, I have also been observing and learning about the process for the family members. Obviously, it is hard for those who suffer from these devastating neurological disorders, but it is also an enormous challenge for families on so many levels.

How can they keep enjoying time with their loved one?   How can they reach them?  How should they think about the situation?  How can they grow themselves, even with the feelings of loss and change?  I am so often moved by the courage, tenacity, and especially the love of spouses and children who care for their loved ones.

I am excited to share  some insights and reflections about this in a new article, Ten Things to Remember When Your Loved One has Alzheimer’s.

Would love to hear your thoughts and any further insights!