“You Are Here” – A Song From The Perspective of Someone with Early-Onset Alzheimer’s Disease

A while back, I shared a song with you written by Bakhus Saba, a caregiver who had just gone through the heart-wrenching experience of placing his mother in a care facility due to her worsening Alzheimer’s Disease. Now, Bakhus has another song to share. This one is written from the point of view of someone with early-onset Alzheimer’s Disease, with music by Karen Morand, and lyrics by Karen Morand, Dale Butler and Bakhus Saba. With their permission, I have shared the studio recording and the full lyrics below:

You Are Here

God knows what’s happening here
I’m all alone in my fear
“Early onset” is what I’ve been told
I’m too young to be old

All the memories I’ve known
Are fading into the unknown
The life I lived with the people I love
Are ghosts that haunt me now
And I need to know somehow…

You are here
You are near
Hold my hand
One thing remains through the year
You are here.

I look in the mirror and what do I see?
The eyes of a stranger stare back at me
The look is familiar but something is wrong
Like an old forgotten song
Can you help me sing along?

You are here
You are near
Hold my hand
One thing remains through the year
You are here.

All that I know is this moment right now
You may be a stranger but love me somehow
In time you will get to know
Love’s hardest lesson is in letting go

One day you’ll pack up my things
I’ll leave you behind spreading my wings
Forgetting confusion, losing the pain
But I’ll remember your name
And I’ll love you just the same

You are here
You are near
Hold my hand
One thing remains through the year
You are here.Old woman looking in mirror

Bakhus shared with me that this song had a few sources of inspiration, including the novel Still Alice and the story of Jan Petersen, a former CBS foreign correspondent. He also said that the second verse came from his own experience of his mother not recognizing herself in the mirror.

Personally, my favorite line came in the second verse: “The look is familiar but something is wrong/Like an old forgotten song/Can you help me sing along?” I often get to help people sing along to songs they thought they had forgotten, and I know that music can bring back memories in other ways, too. I feel privileged to be together with people at those times.

I hope you find this song as achingly beautiful as I did. If you haven’t already, make sure you hear Bakhus’s song “Still A Child,” too.

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Top Ten Ways To Use Music in Caregiving

Music is a universal human experience that helps to draw people together across generations, despite differences or disabilities. In my experience as a music therapist, I have helped many caregivers learn ways to use music to enhance the caregiving relationship. Here are my top ten tips:

 1.     Listen together to your loved one’s music collection.

Break out the records and CDs for the opportunity to be together in a musical experience, and it helps you to learn more about your loved one’s musical experiences.

2.     Use songs to spark conversations.

Do you want to hear your mom’s wedding story? Play some wedding songs from her era while looking through the family photo album. Want to talk about your upcoming trip to Hawaii? Play some Don Ho and Elvis to support your conversation. (Tip: I have lots of discussion-worthy songs in my song spotlight section!)

3.     Create playlists for different times of day.

Music can go a long way in setting the mood for various activities. You might want to play different music in the morning than at bedtime, for example.

4.     Use music to support exercise.

Here’s a fun fact: Background music can lower a person’s perception of the effort they are expending in exercise by about ten percent. That means playing some upbeat music can help your loved one get through all of those exercises needed to maintain physical functioning.

5.     Choose relaxation music wisely.

Because of a process known as entrainment, your body’s rhythms will tend to match the music you’re hearing. So, listen to music that is slow and steady, and you’ll feel your breathing slow and your body relax.

6.     Try playing with the band.

For a bit of a musical adventure, try playing a tambourine or drum along with one of your loved one’s favorite recordings. Just find a beat you can repeat and add your sounds to the mix.

7.     Make up new words to familiar tunes.

Music therapists call these “piggyback songs,” and they can be a great outlet for creativity. For example, change the words of “She’ll Be Comin’ ‘Round the Mountain” to add verses about a granddaughter coming to visit (“She’ll be comin’ from Missouri when she comes”) and what you’ll do once she gets there (“We’ll all go watch a movie when she comes”). (Check out how I used this very song for a great Thanksgiving intervention.)

8.     Use music to help with bathing and dressing.

Piggyback songs are especially useful for communicating information to people with dementia. Sing about getting ready for a bath, and the whole process will seem less scary.

9.     Let music lead to loving touch.

Sing “Cuddle Up a Little Closer” or “Shall We Dance,” and it’s impossible not to hold hands and share a hug. All of us need loving touch, but it can feel awkward in some relationships. Music can help make it more comfortable.

10. Use music for self-care, too.

Don’t forget to take care of yourself, too! Musical experiences can help you deal with the stress of caregiving as well.

Have you tried any of these methods lately? How have they worked for you and your care recipients?

Can Music Cause Harm? (Part Two)

Can music cause harm? In my last post, I talked about how music as a sound stimulus can contribute to overstimulation, increased anxiety, and hearing loss. Many times, people experiencing this kind of music- or sound-related stress show their discomfort in negative behaviors rather than communicating verbally, so it is especially important to be aware of the how the sound environment is affecting the person you care for if they can’t tell you what’s bothering them.

Music can also potentially cause harm in the form of unexpected emotional or physical responses that could defeat a person’s coping mechanisms. There can, in fact, be negative responses to music that you might not expect, and not being aware of and prepared for these negative responses can lead to harm. Here are four areas of concern: Continue reading

Determining Music Preferences – The First Step in Caregiving Through Music

Photo by moodboardphotography via Flickr.com

I’ve been asked several times recently to put together a list of tips for introducing music in a professional caregiving relationship. It turns out I could write a book on that subject. (And I probably will – stay tuned!) More posts will come in the future, but we should start at the beginning – determining your senior’s music preferences.

Why is this such an important first step? Decades of music therapy research have demonstrated that music preference is a determining factor in the outcome of many therapeutic interventions. What music is best for promoting physical relaxation? Client-preferred music. What music is best for engaging clients with end-stage dementia? Client-preferred music. What music is best for decreasing agitated behaviors among clients with dementia? Client-preferred music. While there are times when unfamiliar or non-preferred music is appropriate in a music therapy clinical situation, client-preferred music is usually the starting point in clinical music therapy. Client-preferred music is also the best starting point for caregiving through music.

So, how do you determine what music your client prefers? Continue reading

Skin Hunger and Caregiving Through Music

Have you ever heard of skin hunger?

This phrase came up during a presentation by Dr. Melita Belgrave, a fellow music therapist, at a recent meeting of the Kansas City Partnership for Caregivers. We have an innate need for physical contact with other human beings, and “skin hunger” refers to the problem we have when we don’t get enough. It’s a rather stark phrase that describes the problem exactly, and it’s an especially significant problem for older adults.

Just a few minutes ago, I put my baby daughter to bed. She has a cold, and she was having a hard time falling asleep on her own, so I rocked her to sleep, stroking her hair and humming quietly. When Alice was first born, we held and rocked and cuddled her constantly. As research dating back to 1959 and Harry Harlow’s infant monkeys has shown, babies need physical touch for healthy development. I don’t know of anyone who would deny this these days.

That need for touch continues for adults, but many people wouldn’t identify that as a major issue for themselves. Most of us have little problem getting the touch we need, whether from cuddles and hugs with our families, pats on the back from our co-workers, or simple handshakes with business acquaintances. Sure, we get a sense of what it’s like to long for another’s touch when our kids leave home or our spouses are away, but most of the time, we probably get the physical human contact we need. Continue reading

“Still a Child” – A Caregiver’s Song

Last week, I received an email from Bakhus Saba, a caregiver who wants his song to be heard. Nine months ago, he placed his mother in a retirement home. She has Alzheimer’s disease, and he had lived with her for all of his 52 years and been her caregiver for seven years. He wrote “Still a Child” together with John and Michele Law, about what he went through as a caregiver when he placed his mother in full-time care. Continue reading

Take Off the Pressure: 7 Creative Experiences to Try with Your Loved One with Dementia

I heard a great story on NPR last week about a program that encourages creativity among people with Alzheimer’s disease as a medium for meaningful, enjoyable communication with others. In the TimeSlips program, a facilitator shows folks a photo and encourages them to make up a story about the characters in the picture. Without the pressure of remembering who people are or what is supposed to be happening (as might happen when you’re looking at a family scrapbook), someone with memory loss can have a fun time making up a story about someone else’s life. Plus, as one researcher pointed out in the NPR piece, you don’t have to be a trained therapist to try out storytelling with your loved one. In fact, you can try it out for yourself on the TimeSlips website.

I really love this concept, because it lines up with two ideas that I preach all the time:

  1. Creative activities – music, storytelling, dance, art – are universal human experiences that can be meaningful, even for a person with memory loss.
  2. Caregivers can engage in creative activities with their loved ones as a means of connecting with them.

Creative activities take the pressure off of both the caregiver and the person with memory loss. The person with memory loss may really want to remember the details of their personal history or their current circumstances, just as much as the caregiver wants them to remember, and knowing that they can’t remember can cause anxiety. At the same time, the caregiver is often distressed by their loved one’s declining ability to remember things. Each person’s anxiety can feed into the other person’s anxiety, and then time spent together is all about worry and fear instead of simple, fun, meaningful experiences.

When you’re making up something new, though, you don’t have to remember the details. The pressure is off both people. You don’t have to worry about creating a “stupid story” or “improvising wrong,” because the whole point is making up something new, in the present moment – something that only needs to last for the present moment, not for an eternity of literary critics and art historians.

You simply get to enjoy the act of creation. 

So, I had the fun of creating a list of creative experiences to try with your loved one. Continue reading

Song Spotlight: “Smile” – In Honor Of Mental Health Awareness Month

  • Mood: Melancholy, Warm
  • Theme: Smiles, Looking to the Future, Dealing with Difficulties
  • Tempo: Moderate
  • Genre: Ballad

May is Mental Health Month, and today people all over the country are blogging about mental health issues today. (You can read more and see a list of other posts on the topic here.) For my part, I am focusing on mental health issues among older adults.

First, a few statistics. According to the CDC, approximately 20% of people age 55 and older experience some type of mental health concern. Depression is the most common mental health problem among older adults. Depression causes emotional distress, of course, but it can also lead to impairments in physical, mental and social functioning, and it complicates the treatment of other chronic conditions. Older adults with depression use more medication, visit the doctor and ER more often, have longer hospital stays, and generally incur higher medical expenses than their peers. Depression can also lead to suicide, and in fact, older men have the highest suicide rate of any age group, more than four times the overall rate for all ages.

Now, here’s the kicker. Depression is NOT a normal part of growing older, even though the rate of older adults with depression tends to increase with age. In fact, in 80% of cases, it’s treatable. Depressive disorders are widely under-recognized, and untreated or under-treated among older adults. (You can read the full CDC report here.)

Why is depression pervasive among older adults? And why the common misconception that depression is a normal part of aging?

I’m not a physician and I can’t claim to know the ins and outs of the physiological changes that contribute to depression among the elderly. What I have seen, though, is probably what you’ve seen and experienced: older adults experience many losses, sometimes without adequate social support to deal with them. The passing of spouses and friends, retirement from a meaningful career, declines in physical or cognitive abilities, children and grandchildren living far away, fewer financial resources – the pressures and stress of all of these circumstances can contribute to depression. Add to that the fact that American society doesn’t really value elders the way other societies do – no wonder depression can become such a problem.

That brings us to our song spotlight: “Smile.” Continue reading

Song Spotlight: “Mama Tried”

Migrant Mother, Nipomo, California – Dorothea Lange

  • Mood: Regretful, Defiant, Wistful
  • Theme: Regret, Motherhood/Parenting
  • Tempo: Moderately Fast
  • Genre/style: Classic Country

Mother’s Day is coming up in a few days, and in honor of the holiday, I’ve been sharing many songs about motherly advice and love with clients in music therapy. In fact, a few that I’ve spotlighted before work well for this holiday, including Que Sera Sera, Shoo Fly Pie and Apple Pan Dowdy, Cuddle Up a Little Closer and Button Up Your Overcoat (although it’s a bit warm for that last one. Maybe it would work in the southern hemisphere?)

The fact is, though, that Mother’s Day isn’t always the happiest day, for the children or for the mothers. My heart goes out to mothers who have lost their children and children who have lost their mothers, as I know they are grieving at this time. My heart also goes out to the women who desperately want to be mothers but who have struggled with infertility or miscarriages. These losses leave holes in our lives that cannot be papered over.

And, I’m also thinking about the mothers who have been disappointed by their children. Parenting always involves ups and downs as children grow and life happens. Sometimes things don’t work out for the best, and sometimes children make serious and lasting mistakes, no matter how hard their parents tried to raise them well. This causes a different kind of pain, especially when you think that you are the reason why your child turned out this way. I’ve known mothers of adult children who have experienced this kind of pain. I’ve also heard the regret of folks who disappointed their mothers, who made those lasting mistakes and now can’t repair the damage. That’s the topic of this song spotlight: Mama Tried.” Continue reading

A Musical Response for When a Senior Says, “I Just Want to Die”

I just read an article on how a caregiver can respond to a senior who is saying, “I just want to die.” I appreciate the advice given by Margaret Sherlock, M.A., Clinical Director of the Behavioral Health Program & Assessment Program Services at the Visiting Nurse Service of New York, which includes not ignoring the statements and being realistic about a senior’s need to talk about death and dying, while still setting limits on such heavy discussions and monitoring for signs of clinical depression in both the senior and in yourself. You can read all of her advice here.

This is sound advice, but I do think there is one important piece missing: you must think about how to deal with all of the emotions you and your loved one are both feeling. In fact, this kind of conversation can be so emotional for both the senior and the caregiver that it can be difficult to tell who is feeling what. You might think, is this person feeling depressed? Or is he just ready to die? Or is this person saying she wants to die because she wants to make me upset or get more attention from me? Or am I interpreting all of this wrong because I am the one who is feeling sad, or tired, or frustrated? Or maybe it’s a mixture of all of the above feelings, and I’m not really sure how to put words to it?

Even just trying to identify these feelings is difficult. No wonder these emotional conversations can wear you out! As Ms. Sherlock advised, though, you can’t just sweep the difficult feelings under the rug: they’ll just build up and create bigger problems for you and the senior later on. That’s why I’m usually not a fan of just changing the topic or putting on happy music to avoid the conversation.

When someone says, “I just want to die,” you need to acknowledge their emotional expression and honor your own. Continue reading