The Martha’s Vineyard Film Society will be hosting a screening of The 5th Dementia on Thursday August 8th at 7:30 PM as part of their “Doc Week” schedule.
Q & A to follow screening with director, Serene Meshel - Dillman
Please check their website for tickets and location: http://mvfilmsociety.com/
Gary Le Mel passed away July 6th, 2019.
UPDATE: A celebration for Gary will be held this Saturday September 7th at Warner Brothers Studios. Must be on guest list to enter through security. RSVP mandatory.
Gary was the harmonic voice for The 5th Dementia band. You could hear his voice break through all of the musical instruments and singers when he sang. Gary’s mic was always turned up.
The band often closed out their rehearsal time with one of his favorite songs, Somewhere Over The Rainbow. Gary would clutch his mic, close his eyes, and belt out the lyrics. He was often given a solo for a chorus.
Gary always told me how “pretty” I looked when I’d show up to shoot The 5th Dementia documentary. He would smile and say that he’d missed me in the time between rehearsal days.
Then one day I was sitting nearby talking to Paul at the piano and heard Gary saying the exact same thing to one of the other ladies who was beaming at his compliments.
Gary could make anyone feel special…..because he was special.
I’ll miss you.
You were and still are a huge part of our film.
Rest in peace.
Nantucket’s Dreamland Theater will host screenings of The 5th Dementia July 31st and August 1st.
Tickets available online at www.nantucketdreamland.org
Q & A’s to follow both screenings with Director, Serene Meshel - Dillman.
Dark n’ stormies to follow Q & A’s!
Please join us for a private screening at the Brentwood Presbyterian Church in Los Angeles on February 2nd, 2019 at 5:00 PM. This is a free event but seating is limited.
Q and A to follow with director, Serene Meshel - Dillman
The part of your brain responsible for ASMR catalogs music, and appears to be a stronghold against Alzheimer's and dementia.
29 April, 2018
Some music inspires you to move your feet, some inspires you to get out there and change the world. In any case, and to move hurriedly on to the point of this article, it's fair to say that music moves people in special ways.
If you're especially into a piece of music, your brain does something called Autonomous Sensory Meridian Response (ASMR), which feels to you like a tingling in your brain or scalp. It's nature's own little "buzz", a natural reward, that is described by some as a "head orgasm". Some even think that it explains why people go to church, for example, "feeling the Lord move through you", but that's another article for another time.
Turns out that ASMR is pretty special. According to a recently published study in The Journal of Prevention of Alzheimer's Disease (catchy name!), the part of your brain responsible for ASMR doesn't get lost to Alzheimer's. Alzheimer's tends to put people into layers of confusion, and the study confirms that music can sometimes actually lift people out of the Alzheimer's haze and bring them back to (at least a semblance of) normality... if only for a short while. ASMR is powerful stuff!
This phenomenon has been observed several times but rarely studied properly. One of the most famous examples of this is the story of Henry, who comes out of dementia while listening to songs from his youth:
Jeff Anderson, M.D., Ph.D., associate professor in Radiology at the Univerity of Utah Health and contributing author on the study, says "In our society, the diagnoses of dementia are snowballing and are taxing resources to the max. No one says playing music will be a cure for Alzheimer's disease, but it might make the symptoms more manageable, decrease the cost of care and improve a patient's quality of life."
6:30 Check In
Discussion after film with Director, Serene Meshel - Dillman, Dr. Mark Tramo, MD PhD and Carol Rosenstein, Director and Co-Founder of Music Mends Minds
Registration needed for entry to this event. Click here to register. THIS EVENT IS SOLD OUT
Monday December 10th at 1:00 PM
1332 2nd Street
Santa Monica, CA 90401
RSVP to Serene@The5thDementiaDocumentary.com for admission.
Seating is limited.
Where does one find the inspiration for the subject of a documentary?
For me, of all places, it was at my annual mammogram with Dr. Ross Goldberg. When Dr. Goldberg and I were making the small talk that’s necessary to get through the examination, he suggested that I have a look at a band made up of musicians and singers, all of whom suffer with neurodegenerative diseases.
I’m 55 years old and have had little exposure to diseases like Alzheimer’s, Parkinson’s and Dementia, so I was somewhat apprehensive. Documentary filmmaking is always a labor of love. It is a discipline that pays almost nothing, makes very little in the end, and requires years of passionate dedication to see the project through. I would have to be convinced that the story of these intrepid musicians would be worth the time and effort.
Two days later I was sitting in the pews at the Brentwood Presbyterian Church watching rehearsals of The 5th Dementia Band. The former music professionals and eager amateurs entered the building in various states of difficulty. Some walked in under their own power, some in wheelchairs or leaning on canes guided by caretakers, and others were led, in nearly catatonic states, by loved ones, to their places on stage.
Then they are transformed.
It’s difficult to express just how much joy emanates from this special assembly of talent when they play their instruments and unleash their voices. Songs that I didn’t realize I knew so well came back from some place in my childhood memory. The singers enthusiastically belted out standards like “Moon River”, “Singin In The Rain”, “My Funny Valentine”, “Blue Moon”, Tea For Two”, and “Somewhere Over The Rainbow” while the musicians expertly provided accompaniment. The band has over 1500 songs in their repertoire, most of the material committed to memory, that they perform for 1 1/2 hours, twice a week, year round.
There was no doubt, from the moment the music started, that I had found the subject for my next documentary.
Carol Rosenstein, also a patient of Dr. Goldberg’s, started the band when she noticed that her husband Irwin, who suffers from Parkinson’s and dementia, “resurrected” when he played the piano. Music changed him in a way that no medication was able to replicate. Apparently, cells in the brain that process music are not affected by the diseases. Carol eventually parlayed using music to help heighten cognitive awareness, happiness and even physical recovery, into founding the Music Mends Minds Organization. (musicmendsminds.org)
About some of the band members:
Paul L (Alzheimer’s) needs only to hear someone hum the first few bars of any song and he can play a flawless rendition on his piano.
Gene, the bandleader, (Parkinson’s) prepares the song list each week and counts Paul in on his drum kit.
Mike, (early onset Alzheimer’s) riffs perfectly on his trumpet.
There is Peter (traumatic brain injury) who conjures Charlie Parker on sax.
Michael, a lifelong violinist, is pitch perfect.
Paul F (early onset Alzheimer’s) fills in on percussion, piano, or both. Paul F is a former music producer and if someone is a little off, it disturbs him so that he puts his fingers in his ears.
All of them play without sheet music.
The number of singers varies with each rehearsal between 15 to 20. Gary (Parkinson’s and dementia) is the lead singer, and is a true former musician. Most of the other band members have other professional backgrounds (teachers, attorneys, doctors, nurses, artists) but Gary was a legitimate recording artist and was President of Warner Brothers Music. Gary also sings beautiful harmonies and I plan to have him record the opening song for the documentary.
Diana (Parkinson’s and dementia) holds the microphone in a trembling hand while smiling and tapping her feet to every song. Occasionally she’ll get up and dance in the aisles.
Next to Diana sits Pat (Parkinson’s), Carol H. (Parkinson’s) and Gail (Parkinson’s). Pat doesn’t think she sings very well, so she won’t hold a mic, but she never misses a rehearsal because she says she gets to see her friends and the music makes her so happy that she credits it with pulling her out of a depression that lasted many years. Gail has a beautiful voice and with Carol, they make up for their friend Pat’s quieter voice.
Leola (Alzheimer’s and dementia) is 90. Her smile might be the most contagious of the group. She arrives like clockwork with her caregiver and using her walker, slowly makes her way to a seat on stage. For many rehearsals, Leola’s daughter thought that she was unable to read the lyrics projected on a screen for the singers, since her reading ability was thought to be lost. But when asked to read the lyrics aloud, to her daughter’s surprise, she was word perfect.
Don (Parkinson’s and dementia) used to be the life of the party. His wife Joanie says he would sing, make jokes and dance wherever he went. Don sang for me when I interviewed him, he’s still got it. Joanie says Don looks forward to the rehearsals so much that some days it’s the only reason he’ll get out of bed.
Len isn’t a musician at all, he simply had “conducting a band” on his bucket list. His wife wasn’t sure he would be allowed to join the band. But now, he conducts The 5th Dementia from the front pew where the lyrics often move him to tears.
All are welcome to either play, sing, dance or just watch.
Aside from Gene, none of the band members come to the rehearsals alone. They are accompanied by caregivers and spouses. All of the caregivers sing along too. Margreth, wife of Ken (Alzheimer’s) says she looks forward to the break, each week at the church, when Ken will join his friends on stage and she can relax and sing from her seat in the pews.
Bodies are embraced, hands are held, canes and walkers are put aside. For an hour and half, twice a week, you can feel the roof being raised in the little church in Brentwood, California.
The 5th Dementia Documentary has completed principal photography and is now in full swing on editorial and post production. You can view our trailer, see images from the film and donate through our 501(c)3 Creative Visions on our website. (All donations are tax deductible). www.The5thDementiaDocumentary.com
If you or someone you know lives with a neurodegenerative disease and would like to be part of a band like The 5th Dementia, please contact Carol at www.musicmendsminds.org. There are about 20 bands worldwide and more forming. Raise a roof in your town.
Click here for Online Dementia Journal article
Mike and Janice article for Maria Shriver's Caregiver blog
Mike is 64 years old. He was diagnosed with early onset Alzheimer’s 3 years ago but he probably began showing signs as early as 2010. He couldn’t multi-task anymore, everything became linear for him, and he became slightly paranoid. We were living near Boston and there was a series of tornadoes that devastated parts of our town. After that event, every time the weather got cloudy or overcast, Mike would say things like “I think we have to go to the basement”. He was acting like an old man. He became worried about conserving, like the world was going to end. This was so out of character for him.
A slow progression of depression set in. By 2012 he was diagnosed as having a nervous breakdown. This mis-diagnosis continued for 2 1/2 years! When my 60th birthday arrived in 2014, Mike didn’t remember it. This wasn’t like Mike. I never considered Alzheimer’s to be the cause. He was on medication for depression and anxiety. I assumed he’d get better, but he didn’t.
The strange part was that he didn’t have any memory lapses. He still had (and has) a sense of direction. I did notice that his writing became impaired and he couldn’t retrieve simple math skills. When he couldn’t figure out a 20% tip on a restaurant bill, I thought he was joking with me. He was embarrassed. I realized then that I had to start paying our bills.
Mike stopped driving, willingly. I became his caregiver. I entered into a financial disaster for the next 3 years. We had college loans for 2 kids. I had to close his law practice. Our whole retirement vanished. My future became based on how I could make what money we had last. The stress this caused me has been worse than the Alzheimer’s.
Mike did so many good things throughout his life. He always gave to others. When Mike was finally diagnosed with Alzheimer’s, his college classmates from Notre Dame organized and sent enough money to pay for Mike’s treatments. Our town banded together and planned a benefit. What they did for us was unforgettable. I don’t know what we would have done without them.
I now do all of the cooking, driving, financials and medication supervision. I have no help. Mike is a good man. He didn’t do anything wrong. He would never hurt anybody and I’m not mad at him for getting ill. He tried to shield me from his illness but ultimately he couldn’t hide it anymore.
We’ve been married for 35 years. I’m sad that we can no longer travel together as we’d planned to do. Mike needs routine. He doesn’t communicate with me or anyone else, much. I have a lot of one way conversations. I get lonely but Mike and I still have something. It’s different than what I imagined our time together would be at this stage in our lives.
Mike plays his trumpet for The 5th Dementia Band, part of the Music Mends Minds program. He played the trumpet when he was younger then stopped for almost 30 years. His musical ability has not been affected by his illness. When we got to California, he picked up playing again. We both enjoy the community of the band. I enjoy talking to the other spouses at the church while the band rehearses. Mike loves playing his trumpet.
When Mike can’t find the words to tell me something, he will either sing a song that has the words he needs to convey his message or get his trumpet and play me a song that will help me connect the dots. I’m not sure how his brain is able to always find the right song to convey what he means, but it works! His music brings him joy. He smiles after rehearsals and is more talkative with me. It’s worth the drive to be a part of this program.
You can see Mike play his trumpet twice a week with The 5th Dementia Band at the Brentwood Presbyterian Church. He and Janice are featured in the upcoming film, The 5th Dementia Documentary. You can see the trailer, images from the film, more about other band members and give a tax deductible donation at www.The5thDementiaDocumentary.com.
Paul is the piano player for The 5th Dementia, a band made up of people living with Alzheimer’s, Parkinson’s, dementia and neurological brain injury. The 5th Dementia rehearses twice weekly with occasional gigs around Los Angeles. Paul has had Alzheimer’s disease for the last 9 years.
Paul plays piano by ear so if you hum the first line of a song, he squints, reaches into the depths of his music-box brain, gives a knowing nod, and starts playing the song flawlessly.
Paul’s wife, Marina, is the behind the scenes caregiver/magician. Every morning, she writes down both her and Paul’s schedules on a large pad in their kitchen, a routine that has been set for years. Paul and his caregiver, Alan, check the pad each morning. Marina thinks part of the reason that Paul has done so well living with Alzheimer’s is due to this routine. There is safety in the knowledge that he will be spending his day with people he knows and trusts while playing the piano, a love ingrained in his heart.
Marina is firm in her conviction that she cannot do this alone. She says there was no shame in letting friends and family know about Paul’s Alzheimer’s immediately after his diagnosis. Paul is grateful for this openness because longtime friends and family have helped to keep the much needed rhythm and routine in his life. Sharing about his Alzheimer’s relieved the pressure of having to hide it away. Maybe most importantly, Marina credits Paul’s continued good nature and happiness with playing music with his community of friends in The 5th Dementia band.
Marina, a successful artist, says there needs to be joy of some kind for both people in a relationship. For Marina, she finds joy in her art. I visited Marina at her art studio where she showed me several projects she’s installed this year. The common thread, throughout her uniquely personal and thoughtful pieces, was time.
There is a large metal garage door on the parking lot side of her studio which Marina has painted white. From the very top of the door (still not sure how she got up that high) to the bottom, she has strategically placed little boxes wrapped with the pages of days from Paul’s schedule pad in their kitchen. The boxes are moveable. At the very bottom, on the floor, sits a wooden box of Paul’s childhood toys. I will leave you to figure out (as she made me) how she attached the boxes to the garage door. Marina will tell you that this installation represents Paul’s time with Alzheimer’s and the seeming regression back to childlike behaviors and sensibilities.*
Marina’s past work as a nurse and psychologist has helped her in figuring out how to navigate Paul’s alzheimer’s in a kind and loving way. She looks out for him. She has his back. The “recipe” she has cooked up has led them both through the shadow of Alzheimer’s, a trip she says she wouldn’t wish on anyone, but one that has ultimately led to a place where they can both still find joy alone, in their marriage, with family, friends and community.
Come witness the joy and happiness that music and Paul’s piano playing brings to The 5th Dementia every Monday and Thursday at the Brentwood Presbyterian Church from 1:30 - 3:00 pm. Maybe you’ll even sing along with them.
* Marina’s gallery will be showing her work at the 18th Street Arts Center Gallery 1639 18th Street in Santa Monica from March 29th - April 15th.
This article was written for Maria Shriver's Women's Alzheimer's Movement (WAM) website by Serene Meshel - Dillman
Leola is my 90 year old mother. She has Alzheimer’s with dementia. She lives in a group home now after living with me for many years.
I couldn’t get anything done anymore, so I needed to find help. Her day to day stuff is now being done with caregivers at the home but doctor’s appointments, driving, scheduling, procuring meds, correspondence, maintaining her former home, bills, calls struggling with medical billing, medicare…Shall I continue?
We weren’t particularly close when I was growing up but we are closer now that she is dependent on me. She doesn’t like when she is left alone and wants to come with me wherever I go. She can still walk with her walker and the other day I left her in the car for a few minutes to run into a store. She tried to get out of the car to follow me in. Her walker was in the trunk so she didn’t get far.
Leola always dressed nicely so I like to keep that up for her. She has such nice things. She was a sorority girl so in that milieu they encouraged each other to always look pretty. I try to keep up her standards. I do her hair before every 5th Dementia rehearsal and concert. (Leola is a singer in The 5th Dementia band with Music Mends Minds.) I am reassured when others compliment her. It’s gratifying to know I’m doing a good job. It makes her smile so I know she’s happy. That’s the most important thing to me is that she’s happy.
I’m new at this. I didn’t know about old people or people with dementia. At the beginning I felt adrift and lost. There is a tendency for people to mis-lead you. There is a huge difference between what is promised and what is delivered. Like used car sales. You expect concern and tender-heartedness but receive mendacity. I’ve learned to be her advocate. That is the greatest disadvantage to me. The time it takes to be her advocate. We spent 8 hours in the ER last week. I brought a radio and memory stick with her songs that she likes. She sat and sang the whole time. That’s how we get through it.
She doesn’t cry or get sad. When my brother and I were young, she always found a way for us to take advantage of opportunities that were offered to us. She managed to get me a trip to Europe. If she thought her kids would benefit, she would fight for us. Now it’s my turn. If there’s anything I can do to help her, I have to do it. As long as it puts a smile on her face.
This week we are happy to feature Carol Rosenstein as our Caregiver of the Week along with her husband Irwin. Irwin is living with Alzheimer’s Disease and together they foundedmusicmendsminds.org as a way of gathering those living with neurodegenerative diseases such as Alzheimer’s, Parkinson’s and dementia to play music together.
Irwin also plays keyboards in the 5th Dementia band, which is a band under the Music Mends Minds organization that meets twice per week at the Brentwood Presbyterian Church. The upcoming film, The 5th Dementia, is a documentary that follows the musicians and singers in the band and highlights the joy and healing that music brings to their lives. To view the trailer and see images from the film, go to:The5thDementiaDocumentary.com
Music is such a large part of Carol and Irwin’s life. Read how below in Carol’s caregiving story:
“On the weekends Irwin and I have cuddle sessions. He has a single bed now with rails. I lie sideways on his little bed and we listen to music together. I sit in the room with him at night til he goes to sleep. I like to help put him to bed. We listen to music and I caress him ’til he settles down. It’s all about music. It’s an unspoken language.
Between 5-8pm each day he gets demented. This is the sundowning window. He does not have medication at this time of day. I feel helpless most of the time but the music helps. I put music on and we march around the house or in the back yard. He used to play saxophone in the marching band at Penn. When the music is on, it sends him back in time. He moves his body to the beat. He claps and sings. It lifts his spirit. Sometimes he will look into my eyes and tell me he loves me. I feel fear then. I’m very scared but we are in it together for the full distance. I thank Irwin everyday for what he’s doing to help us with Music Mends Minds. The project is my life line. It makes both of us feel good. Music is the fuel that keeps us going.”
The following is an excerpt from an interview from The 5th Dementia Documentary with Diana Davidow who lives with Parkinson’s disease and her partner, Debrah Constance. The interview took place at their home along the Venice canals.
Serene: Who noticed your Parkinson’s first?
Diana: Me. I didn’t know it was Parkinson’s. For a couple of years before, I would be sitting in a movie and this foot just torqued. And I would have to turn it. I thought that’s so weird. But I let that go. I didn’t think anything of it. But then the other thing I realized in retrospect is that…I have a studio upstairs and I’d be walking there and then all of a sudden it was like my foot fell asleep a little. I also ignored that. I’m very good at not taking in what I don’t want to take in. You know, obviously I stop being unable to feel it so I figured it was nothing.
My gait slowed down. I’m a fast walker and I’m trying to get myself to go the way I used to. I thought this is it, old age. And so that went on for quite a long time. And then the tremor. I had 2 kinds of tremors. A familial tremor and a Parkinson’s tremor. Sometimes it’s worse. My handwriting got tiny. It was like a miniaturization of my handwriting. It got so small.
Meredith (her daughter) was at the doctor’s with me to see whether I had Parkinson’s at UCLA and she saw me writing and she said “You know what mom, you have Parkinson’s, look at your handwriting.” I said “Yeah I do, I do.” So when I went in, I had to tell them everything.
And there’s no definitive way to tell if you have Parkinson’s or not except if you take this particular test. It’s a kind of an isotope something. First of all it’s very expensive but she got it for me. We went to one of those places where you get X-rays. And they ordered this isotope test and this guy, I had to be there waiting for him, and he ran in with it. It had to be used immediately. The whole test was set up and she did it and then said “you have Parkinson’s.”
Serene: Do you take medication?
Diana: I don’t take much. I actually never thought of myself as having Parkinson’s. It was never really a thing to me. I’ve had it for a long time. I’ve had it 6 years now.
Some people have the tremor kind. Some people have the internal kind. So I think I’m lucky. The second that I found out, I got myself into everything that I heard was going to work to slow the progression. I think that it really helped me. I had the speech therapy at the beginning. I didn’t have a speech problem but I wanted to make sure, so I did that. Now I box because that is a very important thing apparently. I just saw the thing on Michael J. Fox. Apparently he does boxing. I go to his annual fund raising gala every year. I think he’s just great.
Diana: This is Polly Bear (her dog is brought to her). She’s the cutest. Does anyone else have a dog as beautiful as this dog?
Serene: How did you get involved with Music Mends Minds?
Diana: Carol and I were in the same art class. We talked about it. We became friends. We went to New York together to the Michael J. Fox gala. The way that I got involved with Music Mends Minds was one day when I was at her house having lunch with her and Irwin, Carol suggested Irwin play the piano for me. He sat down at the piano. I asked him if he knew any show tunes. I love singing show tunes. He started playing and I started singing. He’s playing and I’m singing and he’s playing and I’m singing and we’re having the best time. I couldn’t believe this man was playing the piano. So from that point on I was listening to what she was telling me about him.
Carol decided to send out an email asking for anyone that could play an instrument. She got all sorts of responses from people that played an instrument and wanting to join (The 5th Dementia band) and I was getting nothing. So I told her I had an instrument. She said “you do?” I said “I have vocal chords. I can sing.” Carol said “ok go over there and sing.” So I did! I’ve made good friends there. Pat, Bob, Leola, they are my buddies.
Serene: And now you have a huge group. You meet twice a week and have the best time. The music seems to bring everyone together.
Debrah: The fact that nobody was using their instruments or their talents. And Now. What an unbelievable thing to happen. It’s like a miracle. It’s a miraculous find.
Diana: I really like these people. I fell in love with the group.
Serene: Do you see any change in Diana because of Music Mends Minds?
Debrah: It’s a really happy interlude in her life. It’s a nice little piece that’s added. She brings a lot to the group. They are lucky to have her.
Serene: How do you help Diana now that she’s living with Parkinson’s.
Debrah: I help her by being a loving, supportive partner. Anything she needs. Emotionally, with the family. I’m a good editor. She has a lot going on.
Diana: I have all of these roles, these hats. They’re all great. I had to give something up. I had a lot of things on my plate. What happened was I got tired. I didn’t look at the Parkinson’s like I had Parkinson’s for a long time. I didn’t feel anything different.
Debrah: She didn’t look at feeling tired as part of the Parkinson’s. In the 20 years that I’ve known you, you don’t seem any different. You certainly don’t seem like you’re sick or like you have anything other than you.
Diana: Yeah. The only thing is that when I get a knee that has a problem and a neck that has a problem, I’m not used to that. And then I think well I have to be careful because when I knew I had it, a few years back, I used to fall on the cement. Which I think might have affected my knees. It’s just like coming to me now, oh my god, I had really bad falls. And then it stopped.
1 of their 5 dogs starts barking….
Debrah: Polly Bear stop barking.
Diana: Polly Bear, Polly Bear. Here honey.
Serene: How do you know which dog is barking.
Diana: Their barks are different.
Debrah: Well that’s a tiny dog.
Serene: They’re all tiny dogs.
Diana: Have you seen my artwork? They are abstract paintings. I am having a show in January. I’ll let you know about it if you want to come.
Debrah (pointing): Her latest ones are the women.
Diana: The women. I did a series of women. Women in power. Women who are in transition who are becoming. I have 3 more upstairs and I’m finishing one.
Serene: Is this from the art class you did with Carol?
Diana: Yeah. I went to this class because I wanted to learn abstract.
Debrah: Wait you want to see something? I have to show you what this guy at the gym gave me. (She gets her boxing robe to show us that says “The Menace of Venice” on the back and “Black Lives Matter” on both sleeves while shadow boxing with the hood on.) Don’t laugh. Wasn’t that nice of him?
Serene: Here she comes. (Diana sings Rocky music) I can’t believe she’s 70. How often do you box?
Debrah: 5 days a week and on the weekends I take Thai kickboxing. (She shows us some boxing moves.)
Diana: I can do that too. I take boxing 3 times a week.
Debrah: You take Parkinson’s boxing.
Diana: Well believe me it’s tough. (laughs) Really yeah. Parkinson’s shmarkinson’s…it’s tough. That’s it!
Serene: OMG it’s like a routine.
Debrah: We are a routine.
Throughout my life, my dad and I adored each other but never seemed to have enough time to be together. Now, we have the time. Yesterday we watched a bird for an hour on his porch in the rain. We are connected in the moment. We can’t talk about the past. Larry has dementia. He is aware of his limitations. When asked about this he has always said…”It is what it is”.
Larry lived his whole life in Memphis where he was a beloved member of the community. When he could no longer hide his dementia from his family, I brought him out to Los Angeles to live with me. Once he got here, I took him to doctors that I trusted who got rid of of unnecessary medications that were making him sleep as well as lowering dosages of other medicines. Larry told me he felt like Rip Van Winkle; like he’d woken up from a long sleep. He said everything was beautiful again. Memories returned, he slept less, he became involved with my family and the community.
We joined Music Mends Minds where we met Serene Meshel - Dillman, who is filming The 5th Dementia,* a documentary about the band that Larry sings with every week. He loves being a part of this project. He never had any musical background but there is a strong sense of community at the rehearsals that lifts his spirits. He always comes away from singing with the band feeling great. We play music all the time at home now.
Larry has spirituality and a belief that all is good in the universe. He never gets dark or angry. We go to temple on Friday evenings because he gets more of the feeling of community that he enjoys there. The rabbi always says Larry is closer to God than anyone else there, even in his state.
When Larry first came out to LA, the ripple effect of caring for him became too much for me. A social worker at UCLA told me that on a scale from 1 - 10, I was a 12 and that I was going to burn out fast. To keep myself healthy, I aimed to be a 3! I was able to get caregiving help for him which relieved me quite a bit. He now lives in a house near me with his caregivers. I visit him every day.
Larry used to have note pads everywhere to remind himself of things he did not want to forget. Even with the notes, he would ask me to remind him not to forgot something. He knows things are slipping but he can still relate to me how he feels from his heart. His continued happiness is my most important goal. The music, his caregivers, my time with him and keeping him out of pain and in a healthy body all contribute to this. And now that I’m a “3”, I am keeping myself healthy too.
“It is what it is.”
I’m just glad we can look at the birds together on his porch while I listen to him hum “Singing in the Rain.”