[This is the fifth in a series of articles from Guest Writer Catherine Mossop narrating her husband, Brian’s, journey with the dispiriting effects of dementia, likely Alzheimer’s Disease. In our last installment – Missing – we read of the drama, and Catherine’s anxiety, when Brian decided he didn’t want people visiting for Christmas (2023 December) and took himself for an unauthorized drive. Brian was missing for the next 27 hours.
We learned that, before Alzheimer’s began to destroy his brain, Brian was an accomplished, multi-talented, loving and generous man. We also learned he played harmonica, sang in a band and wrote his own songs. Where had the musician disappeared to? This is his story, and Catherine’s story.]
Brian is a musician and played in bands for years. When we invited people over for any occasion, they automatically brought their musical instruments and many hours of music filled our home, back yard, cottage. Music was always a significant part of Brian’s life: 6-string, 12-string, base guitars, cajon box, bongos, shakers, and all 30 of his blues harps; and the bonus – he can sing. Brian has an amazing voice and he plays the blues – wow! could he play the blues – music is in his soul.
Music is a ‘Red Thread’ – it is a connector of people and narrative no matter how close or disparate they might appear. The story…
It is a blustery day. I’m sitting in my car down at the pier, composing myself – it had been necessary to execute my escape plan – waiting, breathing. Our Visiting Behaviour Support Nurse pulled up beside me for a de-brief. “No worry” I said, in my usual masking way, “I have Brian’s car key, and I called his son to do the ‘distract to diffuse’ phone call. So, all is safe and my guess is I have about 15 minutes before he starts to panic.”
My VBSN begins by asking me how I feel; she knows about my situational extreme anxiety. I indicated that I think I have an ulcer taking shape to which she began describing what a woman’s heart attack feels like. I am not so sure I take comfort with her description but at least my pain isn’t a heart attack.
Having de-briefed and feeling calmer, I returned home only to find Brian disassembling the front door – so much for ‘all is safe’. The door had become a slab with bore holes. The lock set and handle were in bits strewn hither and yon, and tools spread over the porch. With electric drill in hand, he was working hard to pop the third hinge. He hadn’t yet lifted it off the frame. I had no idea why he was disassembling the door other than his compelling gibberish description with occasional clear words of ‘strangers’ and ‘bad people’ in the house – that might be me. Oddly, I understood that juxtaposition – remove the front door to keep the strangers out – got it! Clearly, Brian is anxious and afraid.
Taking a deep breath so as not to show my alarm – on goes my façade – I calmly said “Hey! Let me give you a hand with that!!”.
As a re-direct, I suggested since fixing the door is such hard work, now is a good time to take a break, have a beer and listen to Van Morrison. “Honey, I just heard a new release from Van Morrison – you will love it! Come listen and let’s have a beer”. This is called ‘therapeutic dialogue’ even though in my mind it is still fibbing. I quickly locate a Van Morrison track on Brian’s play list and give him a beer. Here we go, Van Morrison “Into the Mystic” – a favourite. Brian relaxes.
Music is the exit ramp out of TERRIFIED. It has proven time and again to be a significant de-escalating and calming force. (See ‘Notes’, below, on the role and value of music in Dementia care).
Then I called the locksmith who had installed new locks only a month earlier. I will never forget his look of bewilderment when he arrived later in the afternoon to do the repair – the door hanging by a hinge, the lock set gone. He had to go back to the shop to get a new lockset. (I anticipate I will find the missing pieces in the dryer or refrigerator sometime in the future.)
(Note to self: locksmiths show up in emergency situations and are trained to expect the customer to be in distress; they are very patient with a Dementia loved one – they say they have experience and I am thankful.)
In the ensuing few months Brian’s health continued to deteriorate – he had been at Stage 4 Moderate Alzheimer’s. Then came a significant escalation event that led to Brian being taken to hospital and placed in a secure room waiting for a transfer to the dementia specialty unit at Peterborough Hospital.
Harps and Happiness
On one of my visits with Brian at the hospital, I asked the nurse specialist if I could bring him a harmonica to play. She looked at me askance. I am aware that a ‘harp’ could be a ‘weapon’; I mention that Brian seemed to have a good relationship with one of his security guards and my thought was he could play when that guard was on duty. I believed the risk to be low. Since every moment is unique and unpredictable, I kept some harmonicas in my purse as a just-in-case.
The Nurse replied, Okay, but only three minutes please.
And it was MAGIC! Like a sunbeam through dark clouds. He transformed for just a few moments from bewildered and fearful to the musician I loved. Nurses came by and opened the door to his room, other patients stood in the hallway transfixed. Brian was alive with joy, his soul dancing in the clouds.
Three minutes please? – it was 10!
OMG! OMG!!– I found the key to life! I immediately thought I must call Jeff.
Jeff
Brian and his best friend Jeff played music together for years. Jeff, a professional base guitarist, also plays 6-string for fun. He had stayed connected and was pleased to hear from me. He wasn’t like others who abandoned us when Dementia showed up. Jeff and his wife, Sandra, are by my side on this journey.
Thrilled that Brian could access the music part of his brain, I ask; “Can we please arrange a music date? Can you please play your guitar with Brian?” He didn’t hesitate for a second, “YES!!” he said.
We went through Brian’s music book and created a ‘10-set’ with all the harp-keys matched with the song music. Some of these Brian had composed himself. Perfect. “I’ll get clearances and make the arrangements. This could make a big difference.” Jeff is the rock of Gibraltar. I’m so happy I just might burst – I’m thinking, this is going to make a huge difference for Brian. Huge, just huge, oh so huge.
And it has. Jeff visited Brian at the Long-Term Care Home and played with him every month.
But Brian’s journey continues. This past summer Brian did a 4-month stint at the special Dementia Care Unit of the Brain Institute (Toronto Rehab Institute, University Health Network). While there, the Alzheimer’s Society Music Project (see Notes below), had fitted him with a wearable MP3 player and headset, loaded Brian’s play list on it so that music can be with him always. Music has a calming influence. But Jeff was not able to play with him there.
Alzheimer’s disease has an odd way of inflicting decline: big stair down, then sit on a plateau for a bit, then suddenly another big stair down. Brian is now Stage 6 – Late-Stage Alzheimer’s. (There are only 7 stages – the last is ‘end of life’.) With no ability to communicate using words, and failing mobility, we can only rely on facial expression and reactions to understand what is working and what isn’t. We thought we’d lost Brian’s ability to play; we didn’t know if he had enough ‘breath’ to play anymore – but we must try. I bring his harps, put one in his hand, blow on it to make a sound and lift his hand to mouth; Jeff strums his guitar, Sandra sings, we wait 20 seconds and voila! Brian plays. And Jeff and I cry – we can’t help it. Alzheimer’s is a thief so to score a glimmer of Brian is precious. There are no words, only the red thread that may tangle but not break, for his soul to sing to the music.
In the words of Oliver Sacks: ‘To those who are lost in dementia… music is no luxury, but a necessity, and can have a power beyond anything else to restore them to themselves, and to others, at least for a while.’ (p. 385)
Jeff wrote a song about the loss of Brian in his life – a tender melody of melancholy. I feel his living grief. Jeff is on this journey with me. “…Watching him fade away…A crying shame…”
For Brian, I hope he feels the love I have for him when he looks in my eyes; I hope music feeds his soul; I hope he feels Jeff’s tenderness and that fills him with peace; and when I hold his hand, I hope he feels safe on this journey that is so terrifying.
Catherine Mossop, reporting to you from Cobourg, Ontario
(With contributions from Doug Jordan, Kanata, Ontario.)
© Catherine Mossop & AFS Publishing
NOTES
The Benefits of Music for Those Living With Dementia
Oliver Sacks, made famous in the Robin Williams movie, Awakenings, did much research into the causes and amelioration interventions in mental and motor dysfunctions, particularly Parkinson’s Disease, but also many other neurological diseases including Dementia. In his book, Musicophilia (2008) Sacks tells of many cases of the effect of music as therapy for patients with various neurological afflictions: it is the ‘Mozart Effect[1]’ that comforts and soothes, not only cranky babies and stressed out students but also distressed patients struggling with failing memory and mental confusion. In the last chapter, Music and Identity: Dementia and Music Therapy, he tells of the relief patients with Dementia and Alzheimer’s get from listening to soothing familiar music from their past. ‘Music therapy is possible because musical perception, musical sensibility, musical emotion, and musical memory can survive long after other forms of memory have disappeared. Music of the right kind can serve to orient and anchor a patient when almost nothing else can.’ (p. 373)
‘patients with dementia [do not have to be] specially gifted in [music] and yet – remarkably, and almost without exception – they retain their musical response and tastes even when most other mental powers have been severely compromised. They can recognize music and respond to it emotionally even when little else can get through. Hence the great importance of access to music, whether through concerts, recorded music, or formal music therapy.’ (p. 379)
Sacks reports cases of some dementia patients who were consummate musical performers in their past lives, who, otherwise severely demented in everyday self-awareness and self-care, can play their instruments as they did when they had all their faculties. ‘Regrettably, there appears to be no carryover from performance and procedural memory [music] to explicit memory or usable knowledge.’ (p.378)
The Alzheimer’s Society has picked up on these findings and implemented music therapy into the treatment of patients with dementia:
Music is deeply embedded in both our conscious and unconscious minds. This connection becomes especially crucial when brain function declines, as seen in dementia and other cognitive or physical impairments. Music has the power to awaken the brain, unlocking a wealth of memories linked to familiar songs and cherished tunes.
When an individual with dementia is exposed to music they listened to earlier in their lives, they may be able to recognize the song and even recall some part of the memory they previously associated with the song. The well-researched benefits of personalized music include improvements in mood, cognition, and communication; it can stimulate memories and promote relaxation.
Sharing music that is meaningful can also promote a sense of connectedness and can be a bridge between persons with dementia and family members and healthcare professionals. Indeed, overall quality of life may be improved by reducing adverse dementia symptoms and providing an enjoyable activity to engage in. In short, the Music Project provides moments of joy to those living with dementia and their care partners.
The Alzheimer Society Music Project helps individuals with dementia reconnect with the soundtrack of their lives. We provide MP3 players filled with personalized music tailored to each person’s unique tastes and memories. This personalized music experience can significantly benefit those living with dementia by enhancing physical and social activity, rekindling old memories, and improving sleep, mood, cognition, communication, and overall quality of life.
Since 2013, the Alzheimer Society has been facilitating the Music Project with great success. On average the program delivers 800 MP3 players every year to individuals living with dementia in Toronto and across the province.
[1] The Mozart Effect’ has been shown to be largely unfounded when it comes to intellectual development, but music generally, not just Mozart, does provide temporary relief for distress, especially in neurologic patients. The reason for this – the how of neurological processing – remains unclear. (For more on memory and the brain see the blog post, Coding and Decoding.)
All rights reserved. No part of these blogs and newsletters may be reproduced without the express permission of the author and/or the publisher, except upon payment of a small royalty, 5¢.
