These insights are born from my own observations working with music and people with profound memory impairment and their families. There are many excellent resources to help family members of a person diagnosed with Alzheimer’s, online and in communities. I especially recommend attending a local support group for families. Particularly in early stages, others can help you understand the sometimes urgent and practical steps you must take.
#1
Even though your loved one has changed, he or she is still there. We all change, all the time. None of us are who we used to be–our “selves” are not fixed entities. Work on yourself to accept the change, while remaining open as to how to how to view the change. If in late-stage Alzheimer’s, do not make the mistake of assuming your loved one is inert or absent, just because he or she is so altered. Keep seeking ways he or she can respond. Be in the moment. Connect.
#2
Music has a special role to play for both of you. Hearing is the last sense to go at the end of life, and is of vital importance. The latest neuroscience shows that music affects many parts of the brain, and musical memory can be less disrupted by Alzheimer’s than other cognitive functions. In other words, people remember songs when they cannot remember so much else. Bring music to your loved one, on i-pads or other devices. Sing with him or her yourself. Songs from childhood or early adulthood spark memories and joy. Not only does music help your loved one, it helps you! In my experience, the most powerful connection is live music with a skilled, engaging and empathic performer.
#3
Seek emotional connection through touch, eye contact, smiling, singing, or goofing around to bring laughter. In later stages of Alzheimer’s, think about how you might delight and connect with a young child. Caveat is below in #4.
#4
Your loved one may be like a child in some ways, but she or he is not a child. A 3-year-old doesn’t have memories of being an expert swimmer, carving wood, or climbing a mountain. You can at times draw on memories of experiences your loved one has had in their long and rich adult life, reminding her of things she used to do often or well. It is true that at some point you must take away the keys to the car and impose other limits when your loved one has Alzheimer’s. Respect your loved one’s physical boundaries when expressed. Seek to allow your loved one as much adult agency and dignity as possible, for as long as possible, within the boundaries of keeping him safe.
#5
Take care of yourself. Be aware of your feelings of grief and loss, which will come and go over months and years of caring for your loved one. Especially if your loved one once had a strong intellect and that is part of your connection to him or her, this loss of connection can be very painful. Find other people with whom you can have intellectual conversations that you can no longer have with your loved one. Attend a local support group for family members of people with Alzheimer’s. Talk to your friends or a therapist about your feelings of loss. Be sure to get exercise and eat well. Take a break from your routines, spend time with friends, in nature, or whatever nourishes you.
#6
The science has a long way to go to understand Alzheimer’s, other dementia, and the brain in general. The main drugs used to treat Alzheimer’s have not resulted in cures. Keep reading about developments in science, but more importantly: stay open to finding your own ways of ensuring your loved one has the best quality of life possible. Trust your intuition!
#7
Find ways to reduce stress. Too much stress is not good for any of us. Stress exacerbates any illness, including different forms of dementia. If it is too stressful for you to take care of your loved one at home, it is also too stressful for him or her. If your loved one lives in a home or facility, be sure to choose one that has a stress-free, calm atmosphere.
#8
Examine your own flaws in cognition. As you witness your loved one’s cognitive abilities changing, learn to have some awareness of your own cognitive “disabilities.” Each of us has ways we do not see reality as it is, but as we imagine it to be. We all have blind spots, biases, and emotional scars that color our view of reality. Understanding that you also have imperfections in your cognition can help you accept the changes you see in your loved one. Examining your own cognitive issues can help you grow yourself.
#9
All humans need other humans. We are an interdependent species. We all came into the world as babies, who needed constant care for years. As we became adults, we became more independent, but none of us are an island. Your loved one may need more help and care than you do, but it is simply a continuum. You need other people too, for many things including basic needs like food. Realizing this can help you see your loved one as being not so different from you.
#10
Love matters the most. It is last on the list, but of the highest importance. You will grow from opening your heart to loving your person, even though they are so altered. Your loved one may not be able to complete a sentence, but he or she feels and knows love. If your loved one must live in a facility, seek one with an atmosphere of love, with caregivers who have open hearts to your loved one and others in the facility.
If you are interested in personalized music healing for your loved one with Alzheimer’s or other forms of dementia, feel free to contact me at:
elizabethhummel (at) yahoo (dot) com
Below is one person’s experience with music helping his loved one. It was Roy who followed his own insights (#6, above) to find a folksinger (me!) who could connect to his wife when very little could reach her. I love working with Shelly and Roy, and often bring up some of the adventures they shared when we are together singing. She always smiles when she remembers living on the sailboat, or looking up at the stars. I am grateful to Roy for many conversations about his experience and for sharing this piece. I am grateful to Shelly for teaching me how to reach her and others with songs.
“Shelly has advanced Alzheimer’s Disease. Whatever is left of her once energetic and forceful personality seems to live largely in isolation. She has been my companion and wife for almost 40 years, my partner in adventures ranging from running our own raft down the Grand Canyon to canoeing remote Arctic rivers to crossing the Atlantic in our own sailboat. I miss her deeply.
She still recognizes me and her pug Molly, but she can only rarely complete a full thought. One of the few things we can still do together is singing along with Elizabeth. When Elizabeth leads the residents in sing-alongs at Shelly’s adult family home (AFH), and especially when Elizabeth sings directly to her, Shelly’s face lights up, and she joins in when she remembers the songs. I try to contribute by singing with them, by holding Shelly’s hand, and encouraging her, connecting with her through the old familiar rhythms of the songs she learned as a little girl in Spokane the 1950s and some of the folk favorites of the 1960s. Singing with Shelly and Elizabeth gives me a chance share with her an activity we both enjoy.
In between Elizabeth’s visits I’ve tried to fan Shelly’s spark of interest by playing CDs from the 1960s folk era and trying to get her to sing along with me. We both enjoy that, and sometimes Shelly joins in, but Elizabeth’s guitar and singing get a much more enthusiastic response than I can alone. Something about the energy and the personal interaction Elizabeth throws into her performances seems to cut through Shelly’s fog of dementia and to really tickle her. Elizabeth’s weekly hour at the AFH is the high point of the week for Shelly and the other ladies who join in.”
–Roy Evans
More about my music healing work and other testimonials are on my Music Healing page, here.